Serious About SIBO

The more I research and learn about small intestinal bacterial overgrowth (SIBO), the more I realize that various aspects of my complex medical situation created the perfect storm for this incredibly difficult-to-treat catastrophe to take place.  When I look at a list of potential SIBO causes, I can check off most of the items on the list: GI disease, GI surgery, post-op complications, long-term and repeated antibiotic use through the surgeries,  immunosuppressive prescription drugs, steroid prescription drugs, acid-blocking medications for my GERD, a high-carb diet for my j-pouch... all happening during the same one-year time period. I was a goner before I had ever even heard of SIBO.  Once I realized this, I wondered why no one had mentioned to me the possibility of developing this nightmarish condition.  It would have been nice to be prepared for this risk so that I could have tried to take some sort of preventative measures.  None of my three GI's, my primary care physician, nor my surgeon ever brought it up, and when I asked about what might be causing my symptoms and what to do about it, none of them knew much of anything about how SIBO works or how to treat it.  Then I realized that it's because western medicine in general knows practically nothing about it; of course they don't bring it up with patients.   So now that I know, here I am trying to spread the word to the public.  If you are going through any sort of GI distress, be sure you know how to prevent, recognize, and treat SIBO before it gets out of control, because once that happens, you are probably in for years of hardship trying to treat it.

But before we get into that, I should tell you that I recently was referred to a GI expert at UCSF for this
SIBO issue.  Her response was to run upper and lower endoscopies, biopsies, and an MRI to look for other causes including but not limited to celiac indicators or a stricture that could slow motility.

my rectal cuff showing cuffitis           ulcers on my j-pouch

Results of these tests showed a small hiatal hernia, ulcers on my j-pouch, cuffitis, two types of metaplasia in my ileus and j-pouch, and inflammation in my stomach, ileus, and j-pouch, but no celiac, stricture, or other markers she was looking for in reference to the SIBO.  I had a lot of questions for the doctor about these test results, but the only part she was concerned about was the cuffitis for which she prescribed Canasa.  (See our Q & A email exchange cut and pasted at the bottom of this post.)  Basically she discovered what my GI would have discovered anyway at my first annual scope but was no help with the SIBO issue.  So I have been continuing to rely on my own at-home research and treatment methods.

Every time I try to go on a restricted diet to treat my SIBO, not only do I have a difficult time restraining myself psychologically, but the physical pain and struggles in the bathroom that are caused by the increase in fiber eventually derail me, and I break down and grab something starchy that will calm down my j-pouch and relieve the misery, which in turn derails my SIBO treatment plan.  The dietary treatments for my two health issues work against each other, so it's been incredibly frustrating not knowing which direction to go, which means I've been doing a lot of yo-yo-ing back and forth... I go with one diet until I can't take the symptoms any more and switch to the other one.  Well now that I have identified the cuffitis as exacerbating if not causing some of my symptoms, I have been able to treat that piece at least using a different route.  Now that I seem to have the cuffitis mostly taken care of (Cortifoam worked much more quickly and easily than the Canasa), hopefully the fiber piece of that dietary battle will be a little easier.  So here I go again...

This time I'm preparing not for a short-term restrictive dietary treatment but for a serious long-term dietary/lifestyle change.  I've realized (after almost a year of failed attempts and further research) that treating this is going to require a much bigger commitment than I was previously willing to fork over. But at this point I know I'm left with practically no choice.

The "Vicious Cycle" of intestinal damage caused by
SIBO (from Breaking the Vicious Cycle)

From my recent research, I know that if I allow SIBO to go untreated, it will not only continue to plague me with worsening symptoms, but it will continue to damage my intestinal wall, causing irritation, inflammation, ulceration, and malabsorption.  I'm sure that's where my j-pouch ulcers came from, and I'm now convinced that's also what caused my iron levels to plummet me into full-blown anemia ten months AFTER the UC and surgeries were over.  The malabsorption issues would only get worse as my small intestine suffers further damage and as the bacteria grows and eats up more of my nutrient supply.  When the intestinal wall suffers enough damage, bacteria and larger food particles pass through to the blood supply which can cause your body to react in the form of fatigue and higher sensitivity to allergens (both of which I have been experiencing recently).

 I have been through so much the last few years, and I was under the impression that once I was on the other side of the surgeries, things would be okay again, and I could stop worrying about what I eat, what supplements I need, what medications I'm on, symptoms, side-effects, etc.  And today here I am, over a year out from surgery and still dealing with all that same bullshit, feeling helpless and hopeless.  It took me several days to come to accept the fact that I had potentially one to three years of very strict dietary restrictions ahead of me.  No cheating, no half-assing.  Apparently the only way I can get rid of this thing requires a very significant long-term commitment on my part that is sure to be filled with struggles, obstacles, and serious tests of will power on a daily basis that will even spill over into my social life.  It took me several days to come to accept this fact.  I did not like it one bit, and this threw me into a deep depression.  None of it seemed fair.  I knew that if I had any kind of shot, I needed to process these emotions until I came to a place of acceptance, but I just couldn't quite get myself there.... I had to pat myself on the back when I recognized that one of the first things I did was seek help: emailing a dietitian, asking an acquaintance for the name of a therapist, seeking out a local support group...  Still, my willingness to accept my situation was slow going until I had a long talk with my significant other.  Something about that conversation centered me and brought me back to what I need to focus on: moving forward.  Knowing that he was not only supportive and behind me one-hundred-percent but ready, willing, and even enthusiastic to jump in and gain the health benefits of eating the same way I will be (at least when we're together) did a lot for my confidence in my ability to succeed.

So now I'm gearing myself up.  I did some more research and found some interesting new information.  It turns out that probiotics are the least effective branch of treatment for SIBO and can sometimes do more harm than good (specifically the prebiotics that usually come in the probiotic products).  This is why I'm choosing to focus on the antimicrobial supplements that I listed in my last post and more importantly, diet.  Through my research I came across a doctor who seems to be one of the leading experts on SIBO, Dr Allison Siebecker (cited below).

This book explains and outlines the
Specific Carbohydrate Diet

She recommends the Specific Carbohydrate Diet (SCD) as pretty much the best dietary plan out there for treating SIBO.  This is an eating plan I had tried very briefly for my UC in the past to no avail since my UC was too far gone by then, but I didn't realize until after I saw that recommendation that the diet was originally designed for SIBO, so I went back and took another look at the book Breaking the Vicious Cycle (cited below).  It's important to read the book before going on the diet since there is a lot to it, but in a nutshell the end result is to cut out all forms of sugars, sweeteners, starchy carbs, grains, starchy vegetables (including soy), and most dairy due to the lactose (hard, aged cheese is okay).  The only naturally sweet things allowed are limited amounts of fruit and honey.  The rules on this are very strict and even apply to trace amounts of sugars or sweeteners in condiments, marinades, dips, drinks, etc, since the bad bacteria will jump on any particle they can find.  For this reason any type of processed foods are pretty much out, so the diet consists mostly of natural, organic meats, vegetables, and healthy fats with a few nuts and fruits thrown in.

I'm getting ready to start the diet on Monday, so this weekend I'm having a farewell party for all my favorite processed junk foods.  Meanwhile, I've been browsing Pinterest for SCD-friendly meals, and I was very impressed with what's out there and excited to try some of the recipes I found.  (You can view my favorites here, but keep in mind that I have not reviewed all ingredients yet to ensure everything I pinned is completely SCD-friendly.)  Oh, and if any reader decides to try this diet for yourself, be sure to download the SCD Buddy app for easy on-the-go checking on which foods are legal.

One foreseeable obstacle with this plan I have not yet had a chance to attack is the fact that eating this way will require most of my food to be made from scratch at home (including most condiments), which will be incredibly time consuming.  I already have to schedule in extra hours for sleep every day due to my j-pouch waking me up throughout the night, and now I will need to add several hours a week of cooking on top of already feeling exhausted most of the time.  I haven't quite figured out how I'm going to designate more hours in my week to food prep yet, but I'm definitely going to need some go-to easy soups, salads, and stir-fries that I can pre-cook for my workday meals.  However, I will still have to spice things up with the new recipes on the weekends in order to keep from feeling too deprived or bored with the same simple meals every day.  Maybe my man and I will have to start turning date nights into prepping, baking, and cooking food at home instead of going out to eat.

One other thing I will have to keep in mind as I start down this path is that as I cut out my largest source of calories, I will have to be very careful of what I'm demanding of my body in the area of exercise.  I've been chomping at the bit to throw myself into running and weight-lifting and dancing classes and roller derby workouts... but have not been successful there either due to anemia, bronchitis, j-pouch symptoms, changing diets, etc.  Now that the cuffitis is better I should be in less GI pain, but I will be setting myself up for fatigue and injury if I get too enthusiastic with exercise the same week I nix all carbs.  Specifically weight-lifting and distance running while cutting out my main source for glycogen stores will be a bit of a balancing act and will require time for my body to adjust.  One thing working in my favor, however, is that I can consume as much protein as I want, which will be great for repairing and building muscle as well as trimming down unnecessary fat.

I will try to keep you all posted as I navigate the new path of trying to stay athletic and fit while on an indefinitely long-term, no-carb, no-cheat diet.  I will probably stumble here and there, and I may even fall face-first into the mud, but I will never stop picking myself back up, dusting myself off, and trying again to move forward.  Because that's what I do.... because, of course, I'm a fighter.

Sources

• The book Breaking the Vicious Cycle by Elaine Gottchall 
•  "SIBO - Small Intestinal Bacterial Overgrowth" by Dr Allison Siebecker 
•  "Small Intestine Bacterial Overgrowth: Often-Ignored Cause of Irritable Bowel Syndrome" by Allison Siebecker, ND, MSOM, LAc, and Steven Sandberg-Lewis, ND, DHANP 
•  "How to Tell if You Have Small Intestinal Bacterial Overgrowth and What to Do About It" by Jordan Reasoner 
•  Biotherapy Clinic featuring highly-trained holistic medical practitioners 

Test Results Q & A

My email to the gastroenterologist:

Since I was drugged after the endoscopies, I never had a chance to go over results with you. I know your only concern was the cuffitis, but I like to know what's going on with my body. Here are my questions:

1) Do you know what could have caused the ulcer(s) in my j-pouch? Why are you not concerned about them? Could it be Crohn's?

2) I have inflammation in areas other than the cuff: stomach, ileus, pouch, etc... I assume this is not ALL cuffitis. So what could cause inflammation in other areas, and could it be contributing to my symptoms?

3) Two types of metaplasia, due to chronic inflammation... From my prior UC, GERD, SIBO, or all of the above? Precursor to cancer? Why is it not a concern?

4) Following up with local GI for cuffitis, but I originally came to you for the SIBO, which never got addressed other than a "try FODMAPs". Is that really all the help you can give me? I have been living with painful SIBO symptoms for almost a year and am at my wit's end.

Thank you for any help.

The doctor's reply:

Your upper endoscopy was completely normal. The biopsies with mild chronic inflammation are not significant and should not cause symptoms. We biopsy for h pylori and celiac which there was no evidence of. Every pouch is a little inflamed as small bowel is not meant to act as a reservoir for stool. Therefore we commonly see a little ulceration or inflammation in the pouch. Ulcers in the pouch are not diagnostic of Crohn's. You would need to see ulcers in the small bowel above the pouch which we did not see. It is unlikely that the normal appearing mucosa with mild inflammation on biopsy is contributing to symptoms. We would usually see redness, ulcers or swelling like we do in the cuff. Metaplasia is not a concern, dysplasia is a concern. There are no guidelines to follow metaplasia as it has never been shown to be of significance

The best treatment for SIBO is rifaxmin 400 mg three times per day for 10 days. (alternatively 550 mg twice a day for 10 days). Insurance does not cover this but if you want to pay out of pocket we can send another prescription. You have tried cipro and flagyl before. Another possiblity is augmentin twice daily for 10 days followed by probiotics.

[Note: I've tried high-dose xifaxan, cipro, and flagyl. However, although the 14-day dose of any antibiotic works great for pouchitis, it doesn't seem to do much of anything for the SIBO symptoms, and when I come back to the doctor after that, I pretty much get a metaphorical shrug. As in, that's all they've got for me.]

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New Year, New Life

Us at the Boom Boom Room in San Francisco
(I'm on the left, obviously caught mid-laugh.)

First off, let me just say that I had a great New Years Eve partying it up in San Francisco with my cousin and her friends.  We talked, drank, danced, laughed, counted down the new year, cruised the city, slept it off, and then woke up to have an amazing breakfast (okay, lunch) at a food truck festival downtown in the beautiful sunshine.  We all agreed that 2014 was going to be a great year, maybe the best year yet for yours truly.

Now down to business.  Overall my j-pouch finished healing and adjusting many months ago.  However, I still have a couple related issues that have been causing me trouble.  Once I get these two things under control, I believe I will be feeling 100% and able to really throw myself into being an athlete again.  Here they are...

Treating Microbial Overgrowth

In July I posted about having an overabundance of gas in my G.I. tract and how I was able to treat it with a simple fix.  Well, it wasn't long before it came back, and it has been plaguing me ever since. The doctors have tried what they can do, but nothing has helped much.  I also developed other symptoms, so I was dealing with painful bloating, excessive belching, excessive flatulence, intense perianal itching, and even cracks at the corners of my mouth at one point.  This lets me know that it is affecting me top to bottom.  I have been doing lots of research over the past several months and have learned that my issue is due to a severe overgrowth of either bad bacteria, bad yeast (fungus), or both, and it spans my entire G.I. tract indicating a pretty severe case.

Since my last blog post, I have realized that some of my undesirable j-pouch behavior may be due to mild pouchitis symptoms triggered by the bacteria and yeast overgrowth in my G.I. tract.  My symptoms have mostly been overabundance of gas build-up in my stomach and intestine (no matter how much I pass up or down) and intense parianal itching.  However, the more I learn about this problem and how it interacts with the gut and the gut's relationship to immune and brain function, the more I realize that my overall health and other issues may also be affected by this issue as well, such as lowered immune function (getting sick with cold and flu recently), fatigue, brain-fog, irritability, etc.

I have been living with this problem since late spring, and the doctors are at a loss after antibiotics and simple diet change didn't do a whole lot.  So I have taken matters into my own hands.  After doing many hours of online research, I have learned that this issue is very difficult to treat and can take up to six months to resolve more severe cases like mine, but there are things I can do to help.  Treatment is a three-pronged approach: diet change; antibiotics and/or antimicrobial supplements (antibacterial, antifungal, antiviral); and strong probiotics.  The diet change requires eating little or no foods that the bacteria and yeast can feed on, which is mostly any type of carbohydrate, so this means a low-carb diet.  The antimicrobial supplements will help to kill off the bad bacteria and yeast, and the probiotics will replenish the gut with good bacteria and yeast that will take up "real estate" in my gut and help to block the growth of the bad bacteria and yeast.  For severe cases, one branch of treatment alone will not do much, and all three need to be maintained for several months in order to fully treat the condition.  To start this treatment, I decided to do a little kick-off at the new year.

My plan was to starve the little buggars.  If there is no food in my gut, they will have nothing to eat and will die.  I have been fasting since Thursday, taking in only clear healing and antimicrobial liquids: slow-cooked homemade chicken bone broth, ginger tea, green tea, and other herbal teas.  I have also been adding in a few other natural supplements that research shows to be more effective (and less toxic) than antibiotics or other prescription meds.  They are all totally packed with powerhouse nutrients as well as strong antimicrobial and antioxidant properties: grapefruit seed extract, oil of oregano, and coconut oil.  (Benefits of each food/supplement listed at the bottom of this blog post.)

Since I started this cleanse, I have been experiencing "die-off" effects, which is from the toxins that are released when large amounts of bacteria/yeast die, but fortunately they have not all been at the same time. Day 1 was severe weakness, fatigue, and sore throat.  Day 2 was headache, short mild fever, milder fatigue.  Day 3 (today) has been increased gas and chest congestion.  The fatigue is mostly gone, but I am still taking it easy and mostly vegging out since I know my body is being taxed with processing the toxins and little-to-no food.

I found in my research that both chicken and hard aged cheese have practically nothing that the bacteria or yeast could feed on, so yesterday I had just a couple ounces of chicken topped with parmesan to give me some energy.  I will probably have some more this evening and then start to carefully introduce specific foods tomorrow.  If I could keep the fast going longer, I would aim for a full week, but unfortunately I return to work on Monday, and I'd like to be eating by then in order to have enough energy to deal with my classroom full of rowdy teenagers.  However, as I start eating again, I will be careful to start with foods that have no or very little fermentable properties that bacteria/yeast could feed on (except yogurt=probiotics), and I will continue with the powerful antimicrobial supplements.  This would be stage two of my plan, which will last about a week.  Stage three is to introduce other foods for a fuller diet while still keeping everything as low-carb as possible (since bacteria and yeast both feed on carbs) and continuing with the supplements.  This stage may last several months until I feel the issue has been fully treated.

Treating Iron Deficiency

The other issue I have been dealing with lately is iron-deficiency anemia.  I have always had fairly low iron levels, but recently they have plummeted.  I believe this is due to my history with UC, my surgeries, my omeprezole (GERD medication that blocks iron absorption), and my bacteria/yeast overgrowth that also interferes with absorption.  I started feeling very weak, fatigued, short of breath from simple tasks, elevated heart rate, frequent scary/intense heart palpatations, and irritability.  (Which means no working out for the past couple months.)  I know that j-pouchers have a higher risk of both iron and B-12 deficiency, so about a year out from my surgeries I made an appointment to get my blood levels checked for any nutritional deficiencies that may be affecting me.  Turns out everything was in normal range except for my iron.  The most common test for iron is to check your ferritin level.  Ferritin stores and releases iron in your blood and can give a very accurate measure of how much iron is in your system.  Normal ferritin levels (depending on gender and age) range from around 15 up to 300.  Mine was at a 1.  My B-12 was also a little low.  All my other abnormal blood results (hemoglobin, hematorcrit, red blood cell size, etc.) were all due to this iron deficiency, which constitutes a diagnosis of anemia.

My primary care physician decided to send me to a hemotologist (blood specialist) in order to help resolve the issue.  I immediately started taking iron supplements, but since my level was so low, and since I have a few factors interfering with absorption, the hemotologist set me up with iron infusions.  The plan is to do two infusions, one week apart, and then wait a month to give my body a chance to respond by making more hemoglobin, hematocrit, etc., and then retest my levels to see if I need more iron.
My doctor thinks I may need at least four infusions to get me to a good level.  After that, we will continue regular monitoring of blood levels and administer iron infusions as needed, possibly for the rest of my life if necessary.  So back to the cancer center it was, since that's the only location around that does infusions of any kind.  I just finished my second infusion yesterday.  The lady at the counter asked if iron infusions make me feel like Popeye afterwards, but unfortunately that's not how it works.  It takes weeks for the body to get blood levels back to normal once it's receiving enough iron, so I should be slowly feeling better over the next few weeks.  The heart palpitations and shortness of breath are already gone.  (Yay!)


So these are the two remaining issues affecting my health, and both are being treated effectively.  Hopefully I should be feeling tip-top by spring.  I truly believe that 2014 will be the year I stop feeling like a patient and start feeling like a normal person, which is very exciting to me.  I am eager to feel truly healthy again and to get back into working out now that my anemia is normalizing.  Still fighting on, as always!

Healing Foods and Supplements

The following information is a compilation from many online resources.  Feel free to Google "ginger benefits" (or whichever item you're looking up), and you will find all the same sources I viewed to collect this info.

CHICKEN BONE BROTH
Chicken bone broth, if made correctly, is packed with nutrients, minerals, and healing properties.  It can be a powerful remedy not only on overall health  and immunity but on the gut in particular.  The gelatin in bone broth protects and heals the mucosal lining of the digestive tract and helps aid in the digestion of nutrients.  It can fight infection, reduce inflammation, strengthen your immune system, reduce joint pain, and help with bone repair.  The collagen and gelatin also support strong and healthy skin, hair, and nails.  It should be a go-to remedy any time you have digestive issues or any type of infection (cold/flu).
Easy Prep: I have found the easiest way to make homemade bone broth is to pick up a rotisserie chicken from the grocery store, strip all the meat to either eat or freeze, and then throw the carcass, bones, tendons, ligaments, and skin (all contain vital nutrients) into a crock-pot.  Add a bunch of celery, carrot, onion, parsley, and garlic.  You don't even have to chop it very small since it's all getting strained out in the end.  Fill the rest of the crock-pot with water, cook it overnight (about ten hours), and it should be ready by morning.  Just run it through a colander, and voila!  I put mine in a pitcher in the fridge and heat it up by the mugful.

GINGER
Ginger is widely used throughout the world for a all sorts of digestive issues, including nausea, gas, bloating, loss of appetite, colic, diarrhea, upset stomach, and acid reflux.   It improves digestion and absorption.  It has also been known to treat/improve upper respiratory tract infection, bronchitis, cough, congestion, asthma, migraines, menstrual cramps, libido, immune system function, cancer, Alzheimer's, fat loss, arthritis, muscle pain, blood sugar stability, circulation, and to help protect and repair the liver.  One of the main benefits for people like you and me is that it effectively reduces inflammation in the intestines.
Easy Prep: I finely mince the ginger, simmer it in a saucepan for fifteen minutes, strain it into a pitcher, and heat it up by the mugful.  You can also add a teabag to the cup for added flavor or other healing herbs.

GREEN TEA
Green tea is well-known to be a powerful antioxidant to reduce damage and aging to the body.  It can improve blood flow, treat cancer, prevent clots, and lower cholesterol and blood pressure.  It improves brain function and helps treat Alzheimer's and Parkinson's.  It it also well known to stabilize blood sugar, protect against a high-fat diet, and increase metabolism to aid in weight loss.  The amino acid theanine it contains can have a calming affect, helping you to relax and de-stress to aid in depression or anxiety.
Easy Prep:  Add a tea bag to a mug of very hot water (not boiling).  Lemon helps boost it's effects, but milk does the opposite.  Four cups a day is recommended for maximum effect.  (Just watch out for the caffeine - you can get it decaf.)  I plan to start drinking a cup every morning with lemon and honey when I first wake up, since the health and weight-loss benefits of both lemon and honey in the morning alre also well-documented.  (Coffee can wait until I get to work.)

COCONUT OIL
Yes, it is a high-calorie food, but they're all GOOD calories and can actually effectively aid in fat loss.  In addition to being antimicrobial (kills bacteria, viruses, and yeast/fungi), it can help regulate blood sugar and thyroid function, increase metabolism, give you energy, lower cholesterol, and aid in digestion and absorption.  It is a powerful antioxidant, which means it reduces damage and aging to your body.  It can also be used on skin and hair as a strong moisturizer/conditioner.
Easy Prep: I either eat it by the spoonful (it has a mild coconut flavor) or put a dollop to melt in my tea.  It can be used in place of oil or butter for cooking and can be added to just about any food recipe.  It can also be found in capsule form if you want to add it to your daily pill regimen.

OIL OF OREGANO
A number of studies show that oil of oregano is a strong antimicrobial as well, killing bacteria, fungus, viruses, and parasites.  It is an anti-inflammatory and antihistamine and promotes liver regeneration.  It can also aid in digestion and intestinal healing; new research shows that it is just as powerful at treating colitis as prescription meds.   A study reported in the journal Experimental and Toxicologic Pathology found that oil of oregano caused a significant difference in terms of ulceration, mucus cell depletion, inflammatory cell infiltration, vascular dilatation, crypt abscesses, and edema.  It can also help prevent/treat cancer, cold, muscle pain, acne, dandruff, bronchitis, toothache, headaches, heart conditions, allergies, intestinal parasites, earache, fatigue, insect repellent, menstrual cramps, and urinary tract disorders.
Easy Prep: I take 1-2 capsules at bedtime (since it can cause strong-flavored belches during the day.)

GRAPEFRUIT SEED EXTRACT
 GSE is an incredibly powerful antimicrobial and disinfectant.  It kills hundreds of strains of bacteria, fungi/yeast, and viruses.  It has been shown to be more effective than antibiotics, alcohol, and surgical soap at treating and disinfecting.  It is a very effective treatment and prevention for food poisoning, traveler's bug, colds, flu, herpes, toenail fungus, and any type of infection. It can also be applied to wounds.  In liquid form, it can be mixed with a little olive oil to be put on cold sores overnight to effectively kill the herpes virus and treat the cold sore. It can be used to clean/disinfect anything around the house, can be sprayed on plants and bugs, and can replace chlorine in swimming pools.  What's more is that it is completely safe for humans, pets, and the environment.  AND it apparently has some magical ability to differentiate between the bad bacteria and the good flora in your gut.  Supposedly it kills of the bad while leaving the good.    Many people who have been using it for decades swear by it and say it's a must-have in every household.
Easy Prep: For acute treatment I take two 125mg tablets twice a day.  For long-term effects, I will reduce to one tablet twice a day.

Other teas/herbs that are great for both digestion and overall health: chamomile, peppermint, clove, cinnamon.


DISCLAIMER:  Although the side-effects and contraindications are few and far between for these sorts of natural supplements, I have not listed them here.  Please do your own research and/or talk to your doctor before starting treatment with any new supplement or dietary change.

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J-pouch Reality

Well, here I am over a year out from my proctocolectomy and almost a year out from my takedown.  The main purpose of this blog is to spread awareness and to reassure and bring hope and inspiration to people who may be suffering from similar conditions and might be afraid or nervous of what to expect.  For that reason I have tried to remain pretty strong and positive throughout my posts.  However, I wouldn't be doing anyone any favors if I was to totally candy-coat the truth.  Therefore, this post will be about the daily frustrations and hardships of living with a j-pouch... what to realistically expect.

Yes, you can continue living your life.  With a functional j-pouch you should still be able to work, travel, participate in sports, etc., without having to worry about suffering from malnutrition or blood loss.  However, bowel function will NEVER be as easy as it is with a healthy colon and rectum.  Below are some of the long-term effects to be prepared for.

• Unpredictable functioning.  Frequency and consistency can change on a daily or even hourly basis with seemingly no cause or change in diet.  You can feel fine one moment and then feel like you can't be far from a toilet the next.
• Both increased frequency as well as certain foods (certain spices in my case) can cause the infamous butt burn to return, which can be very painful at times.  It can also cause itching, irritation, and mild bleeding on and around the anus.
• True you can eat just about whatever you want..... as long as you are willing to live with the consequences.  Certain foods (whey and dark chocolate for me) will cause significantly increased frequency to the point that I'm going multiple times per hour.  If I eat too much fiber, evacuation can become incredibly difficult and sometimes painful, with the constant urge to evacuate but inability to let much of anything out.  But if I don't eat enough fiber, consistency can become so thin that it is difficult to maintain continence.  Due to all this, diet can be a bit of a balancing act.
• With a healthy colon and rectum you can feel the pressure of needing "to go" slowly build over the course of an hour or two, so you know when to prepare to make a bathroom stop.  With a j-pouch, it is always all-of-a-sudden.  Because the rectum wall and muscles are all gone, you don't have any sensation down there until it reaches the anal canal, which means that you can't feel anything until it's ready to come out the back door.
• When you do have to go, although most j-pouchers can hold and control their bowels, that doesn't mean it is comfortable.  It can be very uncomfortable or even painful to hold it in when you have to go.  It is sort of like having a mild case of diarrhea at all times.
• You have to have post-evacuation cleansing supplies wherever you go.  If I forget to bring my flushable wipes with me or if I forget to refill my travel-pack in my purse and I am away from the house, my only choices are: 1) Don't go, which can be very painful and sometimes not an option.  2) Go but don't get all the way clean, which can cause rash, irritation, butt burn, and itching around the anus.  3) Go and use regular TP to clean yourself, which for me means I have to keep wiping until I am literally raw and bleeding from my anus.  Sometimes I try to run the TP under the faucet to help clean more easily, but then the TP generally likes to disintegrate in my hand.
• I wake up between two to five times per night to go to the bathroom, which means I hardly ever get more than three hours of sleep at a stretch.  This means I'm generally in a constant state of mild sleep deprivation, which can have an affect on mood, ability to handle stress, overall health, and eventually lifetime longevity.  I try to schedule extra sleep time at night and to catch up on the weekends by sleeping in as much as I can.
• Increased gas.  If you've been living with certain diseases, you may be somewhat used to this already.  But gas comes  much more frequently with a j-pouch than with a healthy colon, and if it happens to be behind a small amount of stool, you can't pass it without the stool coming out too, which means I frequently run to the toilet just so I can pass gas.  In the cases that I do not have to run to the toilet to pass gas, sometimes it is smelly, and occasionally it is noisy, but most often when I pass gas, no one can hear or smell it.
• Wherever I go, I have to be self-conscious about the noise I make in the bathroom.  Whether I'm in a public restroom, using my restroom at work (only one door between the toilet and the main hallway where students and staff are passing by), a guest at a friend's house, at my fiancee's house, or even at home with my roommate around, I know that anyone in the vicinity can hear my loud bathroom noises due to the explosive nature of the gas and stool as they exit the body.  I have to deal with this 5-15 times in a 24-hour period.
• Almost every time I go, that same explosive way the stool exits the body tends to spray flecks of stool all over the back of the toilet bowl, the underside of the seat, and even the top of the seat occasionally.  This means that at home I have to clean the toilet several times a week (or daily if I want it to stay clean), and when at someone else's house I have to inspect the toilet behind me and use TP to wipe down any messes I've made.
• Certain sexual positions (specifically the ones that tend to shorten the vaginal canal for deeper penetration) are a bit more sensitive/painful.  Although I have never had a leak during sex, sometimes the jostling of sex can make me feel like I have to go... rarely during but often at the end of sex, meaning I can't always just lay there relaxing and enjoying the post-coital glow afterwards.  I will usually evacuate right beforehand in order to reduce chances of feeling the need to go during or after sex.

To people who are nervous about life-long symptoms, these effects can sound like a lot to deal with.   However, it is important to remember that they are still better than living with the disease.  They are not life-threatening, and their effect on overall quality of life is minimal compared to living with severe ulcerative colitis or Crohn's disease.  I made this choice in order to save my life (which isn't really much of a choice, when you think about it), but I still don't regret having surgery because whatever difficulties I live with today are seriously chump change compared to what my life was like before my first surgery, when my UC was raging and I spent all day in bed, writhing in pain and running to the toilet 20+ times per day.  At that point I had almost NO quality of life, whereas now my quality of life is fairly high.  Again, it will never be quite up there with someone who was never diagnosed with a disease like this, but it is certainly the best I can hope to expect with the circumstances I was given to deal with.

On more of an athletic note, I have been feeling somewhat apathetic regarding working out the last couple of months, and I'm not sure why.  I think it's been due to accepting the long-term effects of life with a j-pouch as well as dealing with my other health concerns (mainly the tumor in my kidney and it's testing and treatment).  However, in the last week I have felt a growing determination to regain my prior level of fitness, muscle development, and strength, and so I have fresh motivation to jump on and stick to my workout routine yet again.  Yes, it will be a little more challenging with a j-pouch, but it is by no means impossible.  Starting this Monday I will be attending a dance class, attending a yoga class, strength training, and running again all on a weekly basis.  I'm ready to feel like a fighter again.

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J on Wheels

(Click on any image for an enlarged view.)

Pulling all my old roller derby gear out of retirement.

I'm the one in the striped thigh-highs with the #3 on my helmet.                                

Dancing and workin' it out on my skates, trying to help
my team raise enough money to go to nationals.

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Grabbing Life

(Over Seven Months Out From Takedown)

  BM = bowel movement       G.I. = gastrointerologist       J = what I call my j-pouch  
  pouchitis = inflammation of the j-pouch, usually caused by a bacterial imbalance  
  takedown = reversal of the temporary ileostomy in order to hook up the j-pouch for use after healing  

"With a hint of good judgment, to fear nothing, not failure or suffering or even death, indicates that you value life the most. You live to the extreme; you push limits; you spend your time building legacies. Those do not die."  -Criss Jami, Venus in Arms (2012)

Apologies ahead of time for the long post, but I have a lot to talk about today!

First off, if you've been following my blog for a while, I'm happy to share that after a recent conversation with my lawyer, anonymity is no longer required.  Although I still write under a pen name in order to maintain a little privacy from my students, I've gone back over every post and removed all the yellow circles that used to be covering my face in the photographs.  While I was at it, I also added a couple new photos here and there, so feel free to go back and browse if you'd like.

Secondly, I will tell you a bit about some minor health events that have occurred in the last few months before I get to the fun stuff.  A couple months ago, right before school let out for the summer, I got a little overly confident with J's progress, and I started working out more, changed my diet a bit, and added some powerful antioxidant supplements.  Suddenly my frequency, urgency, and anal pressure was way up, meaning I felt like I pretty much had to go all the time (even right after a BM), but I would only pass a tiny bit at a time.  My first conclusion: pouchitis triggered by a supplement that I had previously suspected used to aggravate my ulcerative colitis (mistakenly thought it would be safe since I no longer have a colon).  When I figured this out, I immediately tossed the supplement in the trash and called my doctor, who started me on a round of Cipro (antibiotic commonly prescribed for pouchitis).  This did the trick to reduce the urgency and frequency within 24-hours, but ever since then, my ability to sleep through the night has been shot.  I've been hoping that I would slowly return to that point, and now after a couple of months, I think I am getting pretty close.  Will be super excited if and when this happens.... hope it's before school starts in a couple weeks.

In addition to dealing with the pouchitis, I had been noticing a build-up of air in my stomach and intestines during the late spring and early summer.  I'm not talking about your typical gassy j-pouch, but rather a painfully bloated belly, and no matter how much gas I passed (up or down), it just kept continuously filling back up.  I lost my appetite because of it, and when I did eat, I couldn't fit much in my tummy since it was already full of air.  It seemed to be the worst in the mornings.  I figured that this was due to an imbalance of bacteria that was still sorting itself out from the two months of solid antibiotics that I was on following my takedown, and the recent week of Cipro hadn't helped.  I'd been waiting for the issue to resolve itself while trying some generic probiotics as well as eating yogurt every day, but this didn't seem to do any good, and since the problem was sticking around for longer than I thought it should, I decided to call my G.I.  I'm thankful I did.  As we chatted over the phone, she said there were tests she could run, but first she had me try three modifications before I bothered with making an appointment for testing:

1. Increase my omeprazole (for acid reflux) from once a day to twice a day.  
2. Switch my probiotic to the name brand Align, since it has a specific strain of bacteria that she wanted to make sure I was getting (bifidobacterium infantis).
3. Cut way back on simple carbs, since that is what the bad bacteria feeds on.  

I did all three, and the air was miraculously gone by morning.  (Have I mentioned how much I love my G.I.?)  I have since added carbs back in with no negative effects, and more recently - upon doctor's approval - dropped the omeprazole back down to one a day.  I'm still taking the Align until the pack runs out (six week supply), and hopefully things will have stabilized by then.  Problem solved.

Thirdly, I'd like to include an update on how my diet has changed since my last post.  I am feeling much more positive since then because of what I have discovered as I've been experimenting with food.  I've actually found out that I have very tight control over the density/consistency of my BM's strictly based on how many vegetables I include in my diet.  In my last post, I was frustrated with the anal pressure and difficulty evacuating that stemmed from eating a high-fiber diet, so I had cut out all veggies.  My BM's quickly switched over to a very watery consistency, which ended up being TOO loose, to the point where I was having increased frequency yet again and even some trouble keeping them in!  Since then I have found a happy medium.  The perfect balance seems to be one normal-sized serving of veggies per meal (who woulda thought?), which would be a good handful or two of cooked veggies or a small side-salad.  If I keep it at this level, my stools remain loose enough to evacuate easily but thick enough to retain easily.  The perfect consistency is about that of apple sauce or a milkshake.  I'm glad that I can still get nutrients from vegetables and don't have to cut them out entirely, and I'm even more happy that I actually have reliable control over my BM's.

The other dietary miracle I have discovered is that when my G.I. told me to cut out carbs (which was around the same time I was cutting out veggies - right after my last post), it had no negative effect on my j-pouch.  At the time, my diet looked a lot like Atkins, but when I added a serving of vegetables to the mix to thicken things back up a bit, my j-pouch was a happy camper even without the carbs.  Coincidentally, this high protein, low-carb diet caused me to drop weight like mad.  So I have also discovered that I have pretty tight control over how quickly I lose weight by how many carbs I consume.  If I want to trim down slowly, I can limit my carbs to small amounts.  If I want to trim down quickly, I can cut out pretty much ALL carbs (especially simple carbs) and just increase my lean protein and healthy fat intake while my j-pouch remains unaffected.  So a typical meal on this plan would look like any of the following:

• turkey steak, a side salad, and half a sweet potato with a little butter
• chicken tenderloin with steamed veggies and a side of refried beans
• spinach scramble topped with a sprinkle of cheese and avocado along with a greek yogurt
• taco salad minus the chips: lots of diced chicken, shredded lettuce (not too much), shredded cheese, black beans, diced onion, diced tomato, avocado, a spoonful of salsa and plain greek yogurt (excellent sour cream replacement)

I should add that in recent years I have also learned to stop eating when I'm full.  (I used to be a chronic over-eater.  Like, I would eat till I felt sick at every meal.)  Since I have always also been a very slow eater (I chew my food thoroughly), this gives my body time to realize it's satiated well before I've eaten the same amount as someone who eats more quickly.  Does that make sense?  So someone next to me could be eating one full serving of food in the same amount of time it takes me to eat half a serving or less, but we both get full around the same time.  You can guess how this affects my health: I end up eating very small portions, which helps contribute to my trimming-down.  Now, don't get me wrong... It still takes huge amounts of will-power to resist cookies, donuts, french fries, milkshakes, chips, crackers, etc, but I can do it if I want it bad enough.  And as long as I give myself pretty small amounts of these things here or there (meaning OCCASIONALLY, on special occasions, not every day), I don't feel so deprived that I break and binge (a debaucle at which I also have great practice and skill).  (Can you tell I have a bit of a parentheses fetish?)

Since I am a person who likes being in control, I am very excited to know that I am back in control of both my stool consistency and my weight, and I am really stoked to be able to work towards my fitness goals just as easily as before.  In fact, this may be the time in my life when it is the EASIEST to work towards my fitness goals since I am no longer sick and am all healed up and past all complications from surgeries.

For the first few weeks of summer break, I was making it to the gym almost every day.  I had to take a break due to a few things that popped up (travelling, house renovations, health issues), but between those weeks in the gym and the house renovations I've been doing (using power tools and lifting 60-lb bags of concrete, bags of sand, hundreds of 15-lb patio pavers, kitchen cabinetry, etc.), I've actually been gaining a good amount of strength, muscle and endurance through the summer.  In order to keep the momentum going, I'm going to jump back into that daily gym routine starting tomorrow.

These recent dietary and athletic developments have gotten me back down to fighting shape.  Right now I am right around 135 (at 5'7"), which has been my goal weight for a long time.  I still have a few trouble spots I'd like to see trim down a bit more (tummy, inner thigh, love handle area), so although I'm pretty happy with where I'm at, I still have goals.  I'd like to lose another ten or so pounds of fat and gain a bit more muscle, and I'd still like to work on running and building my lower leg strength so I can endure a half-marathon without getting mega shin-splints.

Since I have been feeling so incredibly healthy the last couple weeks because of everything I have discussed above, I have decided to finally get back into roller derby.  I used to play for a league over three years ago, but had to quit due to both an injury and a move, and then when I normally would have picked it back up, timing was always terrible: I was starting a new job, or too sick to play, or going through surgeries, etc.  However, I think I'm finally in a place where I can get back into it.  In addition to being a whole lot of fun, the twice-a-week, two-hour-long practices are a KILLER workout, with frequent games to boot.  I have found a league I want to join, and will be starting practice next week, which I am super stoked about, so you can expect pics of me on wheels in the near future.  I can't wait to get back on my skates!

You can't even see my scars!

And finally, I should mention my recent travel adventures.  In the beginning of the summer I took a trip down to southern California to visit some friends, which was a lot of fun.  But even more exciting was a couple weeks ago when my manfriend and I flew down to Mexico and stayed at a five-star, all-inclusive resort on a beach in Cabo for a week.  It was fantastic.
We spent a lot of time lounging by the pool and sipping mai-tais, pina-coladas, and daiquiris.  We went for a romantic night-time walk down the beach, went on a snorkeling boat tour, took a taxi downtown to cruise the local shops and practice our bargaining skills at the flea market, splashed in the waves, chilled out (or rather heated up) in the hot tub at night, feasted on buffets, watched the nightly shows, and I even got a free SCUBA lesson in the pool.  PLUS, I came back with a killer tan.  We both had a blast and decided we are going to do a LOT more travelling in the future.

My motorcycle has been sitting in the garage for most of the summer because of hectic schedules, travelling, health issues, and needed repairs, but today I just got new tires on it and took it for my first out-of-town ride, which was amazing.  I will be riding it a lot more now that I have all the repairs done and got my riding boots fixed, and I'm pretty excited about that as well.  For an adrenaline junkie like me, it doesn't get much better than riding motorcycles and playing roller derby.

So between my developing relationship with the man of my dreams, my new-found control over my body, my fulfilling workouts, my travel adventures, my motorcycle riding, and my roller derby plans, I really feel like I am living life to the fullest.  The point I want to get across today is how enriching of a life you can lead with a j-pouch.  Of course J isn't perfect - I still go to the bathroom more often than I'd like, and I still have to avoid chili powder or I get butt burn from hell - but as you can see, it's not holding me back from enjoying life one bit, and I'm back to grabbing life by the horns.

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Reconciliation

  Stricture - a narrowing of a canal in the body.   
  Anastamosis - Surgically attaching two parts together through either hand-sewn or stapling techniques.  


"Some days I question my decision- then I remember that I'd probably be underground had I not made this one..."   -Allison Siddle   (No Colon and Still Rollin' Facebook Group)

I was originally going to write this week about pouchitis, j-pouch tips, and working out with a j-pouch, but yesterday another topic jumped out and waylaid me seemingly out of the blue.  So here it goes...

I've tried really hard to maintain a positive, optimistic outlook throughout everything I have been through, and it has helped me to really take all the obstacles I've had to face in stride.  Plus, it's been like some big journey, the destination of which, or the "prize" at the end, is supposedly a well-functioning digestive system, which is the dream that we are all aspiring to.  So here I am, seven months out from takedown, and shit's starting to get real.  The "honeymoon" phase has worn off, and I'm learning what my new baseline looks like.  What life with a j-pouch really means, day in and day out.  The bottom line is that I'm tired of feeling that any part of my life is still dictated by my gut.  It's been eighteen years, the last three of which have been particularly trying, and I just feel like things should be easier by now.

Somewhere along the line, I started anthropomorphising my j-pouch by referring to it as "he" and what "J" likes or doesn't like.  So one of the most difficult things for me to reconcile when it comes to j-pouch life is that while one of my big fitness goals has been about getting cut, the healthy diet that it would take to accomplish that goal (whole grains, lots of veggies, low-carb, low-fat, high-fiber, etc.) is the exact opposite of what J likes, which means the diet that J likes (carbs, fats, no veggies, low-fiber) is pretty unhealthy.

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For those of you wondering about what a j-pouch-friendly diet looks like seven months out, here is the rundown...

Foods I totally avoid:  dark chocolate, whey protein, peppers or anything spicy.  (These foods will have me living in a world of regret for a good 6+ hours if I have even a small amount.  The dark chocolate and whey will greatly increase frequency, and spicy foods will cause hellish butt burn.)

Foods I eat in very small amounts:  nuts, seeds, raw veggies, whole grains.  (These foods will cause increased frequency if I have more than a few bites.)

Foods I eat in moderation:  milk chocolate, cooked veggies, beans.  (These foods are okay as long as I don't go overboard.)

Foods I'm surprised I don't have to moderate: popcorn, carbonated beverages, alcohol, sugar, caffeine, fried foods, soy, casein protein.  (These foods don't seem to affect me much at all.)

Foods that seem to keep J happy:  bananas, rice, creamy peanut butter, potatoes, cheese, marshmallows, pretzels, toast/bread, yogurt.  (These foods can lower water content, slow down digestion, and reduce bathroom trips.)

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This makes it practically impossible to eat in a way that would be most beneficial for dropping fat, unless I want to spend all day in the bathroom.  I've been waiting for my j-pouch to mature enough to handle a super healthy diet, but every time I try to eat a diet based mostly on lean protein and veggies, J revolts.  I had been trying (again) to make this diet work for the last couple of weeks, and I ended up nothing but frustrated, disappointed, and depressed as I dealt with increased frequency, difficulty emptying, and almost constant anal pressure, which made it very difficult to motivate myself to work out.  In fact, what I was experiencing much resembled the symptoms of a stricture at the anastamosis site between the j-pouch and anal canal.  (More on this later.)  Turns out everything's fine up there - I just need to adjust my eating habits.  But dealing with these symptoms for enough hours, days, weeks in a row can really wear on a person.... And it was yesterday morning that the frustration from living like this collided with my frustration from my obvious lack of progress with my cutting goals (i.e. no loss of pounds, inches, or body fat percentage) and the fallout from that collision caused a minor meltdown.

After a good cry and processing of these emotions, the realization that I came to yesterday is that if I set my dietary and fitness goals around something that my specific health situation will constantly be getting in the way of, I will continue to be nothing but frustrated and disappointed as the two opposing agendas wage war in my gut.  Although I would still love to see myself cut, I cannot eat a diet that causes such gastric distress and expect good results.  (I've eaten no veggies for the last couple days, and all those annoying symptoms have disappeared.)  It was a pretty difficult conclusion to come to, but I figure that the only way to see real progress towards my goals and feel successful is to change my goals.  So at this point I am attempting to change my perspective.  Instead of focusing on dropping body fat, which is primarily accomplished through diet, my goals need to be less about how much I weigh and what I look like and more about about what I can do and accomplish.  Originally I was pretty upset over this since it seemed like my fitness goals were such a big part of my identity, but I need to keep reminding myself that I can still be athletic without such a huge focus on cutting.  In all honesty, this is probably a much healthier psychological outlook anyway.  My fitness plan now will now incorporate whatever makes me feel good and healthy, not what will make me look the way I want, and I will measure my progress by how much I can lift, how far I can run, how many laps I can swim, and how fast I can recover.  This change is one that will still take time to reconcile, especially since I can get quite determined and competitive when I set my mind to something, but I think it's a direction in which I will be able to find much greater success.

When I explained this all to my manfriend in the midst of my cry episode, he mentioned that it sounded like I was still grieving.  Once I thought about it, I realized he was right.  The day before yesterday I broke down and cried at the gym when it hit me out of the blue (again) that I will never have a normally-functioning digestive system in my life.  Ever.  This is something I can never go back from.  I've mostly taken everything in stride, but when it hits me like that out of nowhere, it's kind of hard to wrap my brain around.   Right now as things finish settling in, it's going to be all about learning (and accepting) what my new normal looks like.  Of course there will be some successes and some losses that I will have to celebrate and grieve for as I go.  However, I still have many things to be thankful for, and most importantly, I'm still alive.  Although I may be fighting in a slightly different direction now, I'm still fighting for it.

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The Adaptation Period

I finally get to change my tummy pick from sad to happy!
(Ipod Shuffle still attached from today's run.)

First off, I have to apologize to my loyal readers that it has been over two months since I've updated my blog.  I have been meaning to publish another post about life with a j-pouch for over a month now, but I honestly have been too busy enjoying life!  I have so many exciting things to share with all of you about what I've been up to since my last post that I'm having a hard time trying to figure out what to talk about first!

As some of you already know by now, doctors and experienced j-pouchers will tell you to hold any complaints or freak-out moments regarding results of the surgery until after the five-month mark.  The reason is that a brand new j-pouch has to go through an adaptation period.  During this time the j-pouch has to learn its new function, which involves a couple of changes.  First of all, since the j-pouch is made from small intestine, who's normal job is to push food through constantly, the j-pouch has to learn that it is the new end point and that it does NOT need to push food through but rather store waste.  Secondly, the small intestine learns to absorb more water in order to pick up the slack of the missing colon.  Thirdly, the j-pouch will grow and expand to fit the needs of its new function.  And finally, it needs to finish healing and re-establish a healthy balance of intestinal flora (healthy bacteria that helps to break down food).  Much of this change happens within the first five months or so, but the j-pouch can continue to adapt and settle in for up to a year or more.  Right now I am about four and a half months out from my takedown, and here is how I am doing on all the main points that future j-pouchers seem to be curious about.

Bowel Schedule & Sleep:

Since my last post, my BM's have become more predictable.  I go probably about five times per day, slightly more if I eat something my j-pouch isn't crazy about, so it typically stays between five and seven.  My biggest complaint about j-pouch life used to be that I woke up one to three times a night to use the bathroom, which disrupts my sleep cycle.  (And when I get up to go, it's not like I can just stumble to the john with the light off, pee, and go back to bed.  Getting fully clean after a j-pouch evacuation requires light and attention, which means I have to wake all the way up, after which it is sometimes difficult to fall back asleep.)  For a few months these nighttime BM's were on a pretty regular schedule: once between 1:00 AM and 2:00 AM and again between 4:00 AM and 5:00 AM, sometimes more if my j-pouch was feeling unruly.  This meant that I never felt quite rested; I couldn't sleep in, and I worried that I would never get a solid night of sleep again.  However, I am proud to announce that over the last couple of weeks that schedule has been slowly stretching out until the last three nights I have actually slept through the night without waking up!  This seems to be my new schedule, now: getting a solid night's sleep.  Wooo-hooo!!!  For those of you who don't know me, this is a HUGE win for me.  I am SO excited about this sleep thing.

Diet:

I mostly eat whatever I want without having to worry much about what will happen to my gut.  However, there are a few things I have to make sure I eat in moderation, or I may end up with extra bathroom trips that night.  I still don't eat too much fiber, but I am very slowly bringing it back in.  I have noticed I can eat cooked veggies without much trouble (soups, stir-frys, etc.) and I can eat small amounts of raw veggies, like the amount that would be on a burger or a small side-salad.  (I did try a large salad right after my last post, and my j-pouch didn't like it, so I went back to avoiding raw veggies for a while.)  My goal is to be able to eat full salads by summer.  I can have small amounts of nuts or seeds as long as I don't overdo it (a handful of nuts, but not two).  I was previously avoiding chocolate since it stimulates the bowel, but I have found just within the last week that my j-pouch now tolerates small amounts of chocolate just fine.  In the past, I have used Imodium before drinking alcohol, but the last time I went out I did not take any, and I had three rum drinks with no ill effects and maybe only one extra bathroom trip that evening.  (I did notice, however, that I got pretty buzzed off those three drinks, letting me know that it was the Imodium that was giving me the sky-high alcohol tolerance I described in my last post.)    Other than that, I have no limitations on what I eat.  I am hoping that the few foods I still moderate will become more tolerable over time until eventually I am eating whatever I want whenever I want.

Work:

I returned to work full time on February 19th, which was just over two months after my takedown.  (I would have been able to go back sooner if I hadn't had so many complications after my second surgery.)  Although I enjoyed being back at work and interacting with students, I have to admit that it was quite exhausting at first.  Before my surgery, I was incredibly ill with UC, and as soon as I healed from surgery one I was back in for surgery two.  So with everything combined, there were about five months during which I spent the majority of my time in bed.  This alone, I believe, contributed hugely to my exhaustion in coming back to work. Teaching is an exhausting job to begin with, and the first couple weeks back from summer break (which is two months long) are usually tiring, so coming back from this was even worse.  However, I slowly built up my strength and endurance, and now I'm teaching energetically all day, just like I was back in my healthy days before all this happened.  I have no bathroom issues while at work.  If I do ever feel the need to go, I can hold it as long as I need to until it's convenient.  I am usually at work from around 8:30 AM until about 4:00 PM, and I usually go once during that time, either at lunch or right after school is out.

Exercise:

Because it took a while to recover from my complications, and then it took a while to adjust to being active and back at work full time, it took me much longer to get back into exercise than I had hoped.  However, a few weeks ago I did start adding some workouts after work, and now I am working out four to five days a week.  I am running two to three times a week, though not very fast or very far (under 2 miles) since I'm dealing with shin splints and feeling that old ankle sprain acting up, but I have learned to start my running practice very slowly before building up and adding mileage.  Consistency and perseverance are what will get me there.  I'm also doing strength-training two or three times a week.  I'm still working on building a foundation all around since I've been out of the game for so long, but I am excited to be back in it full-swing and love feeling that endorphin rush from pushing my body to its limits.  My body seems to be responding pretty quickly now that I'm off all those awful drugs (prednisone, immunosuppressants, etc).  Sometimes the gravity of the bouncing (during a run, for example) or the flexing and exertion of weight-lifting can cause me to feel like I have to go, but again, I can always hold it until the end of my workout, even when I'm working out in my home gym.  I also plan to resume my yoga classes, roller derby sessions, and dance classes in the near future.

Dating and Sex:

Another exciting thing that has happened since my surgery includes advances in my love life.  Once I was off of all drugs and free of post-op complications, I started looking into dating again.  Coincidentally, the first man I went on a date with turned out to be totally amazing, a person I see as my perfect match after so many years of searching for the right one.  We have become quite serious very quickly, and I'm loving every minute of it.  A lot of people (females especially) want to know about sex after j-pouch surgery.  Well, my sex life is amazing, too.  I can assure you that even with a very wild and kinky sex life, everything functions just as it should in every position imaginable.  In the beginning, I would occasionally feel the need to go a few minutes after finishing intercourse, but never during... and I haven't even noticed that happening for quite a while now.  And no, I have NEVER experienced any leaks during exercise or sex.

Other Fun Stuff:

My new baby: a V-Star 650 Classic.  :-)

I have also been going out to social events, eating at any restaurant without hesitation, travelling short distances to visit family members, and basically living my life to the fullest.  I took a motorcycle riding class over spring break and bought a new motorcycle the next day.  It's something I've wanted to do for many years, and now I can.  I've been learning to ride and LOVING it.  I've been riding to work for a couple of weeks now, and I'm just about ready to start taking it out of town.  My new man-friend and I have also been planning vacations: backpacking trips, cruises, etc.  I have no doubt that this summer will be packed with fun excursions and adventures.

Healing Scars:

These pics were taken April 8, 2013, two and a half weeks ago, which was just over six months after my first surgery and exactly four months after my takedown.  Feel free to click on the image for a larger view.

This is a shot of all five scars.  Some of them are barely visible, especially in photographs.  Scars 1-3 are from the laproscopic incisions from surgery one. Scar 4 is where my stoma used to be and was closed at my takedown, and scar 5 is the longer incision where they created the j-pouch during surgery one.  Below are close-up shots of each.

Incision one is towards the center of this photograph, barely visible.  The dark spot you see to the bottom left is where they inserted the drain in my side during my hospital stay due to the complications of my second surgery.  This would not have been there under normal circumstances.

Incision two is inside my belly-button.  You cannot see it in the photo or in real life, even if you stretch and peer inside, LOL.  What you do see here above my navel is the scar from where I used to have my belly-button pierced many years ago.

 Incision three is towards the center or bottom left of the photograph.  This was originally a laproscopic incision, but it is more visible than the other lap scars since it was also the site where my JP drainage tube was left in for eleven days after my first surgery.  The dark spot you see in the upper right is where they had a drain inserted in the hospital due to complications from my second surgery.  Again, that would not be there under normal conditions.

Incision three used to be named Stella (my stoma).  This is where my ileostomy was for ten weeks between the two surgeries.  This is the only incision they used during surgery two... They just stitched the small intestine back together, poked it back in my abdomen, and closed me up.  The resulting scar is about two inches long.  The blob you see in the middle is because a piece of the end stitch from inside where they sewed my ab muscles closed was poking through the skin incision during the healing process.  (It was all covered with bandages in the hospital, so I didn't realize it until it was too late.)  It healed that way, and eventually the inner stitch slowly dissolved over time, leaving this darker spot in the center of my scar.  If the stitch had been left inside and under my skin as it should have, this scar would look more like a straight line.

Incision five looks somewhat like a c-section scar.  This is where they opened me up to create the j-pouch during surgery one.  It is three inches long.  It healed up beautifully and is barely visible now, as you can tell from the photograph.

In Conclusion...

So here I am, about six months after my first surgery, back to living a fuller life than I ever had since my UC diagnosis turned severe.  I am a very happy j-poucher and haven't regretted my decision for a single second. I am very optimistic about my future and would be happy with the way things are now, but I know they will continue to slowly improve even more over the next few months.  I will probably start writing less and less now that I'm getting busy with loving life again, but I will try to check back in every couple months or so.  The next time you hear from me will probably be during summer break.  Until then....  keep on fighting the good fight!  :-)

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