I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Sunday, February 17, 2013

Back to Life

  BRAT diet = Bananas, rice, applesauce, toast.  Refers to a diet of these specific slowing foods but can also include   bread, pasta, and other white carbs or bulking foods known to slow the bowel.  
  C. diff = Clostridium difficile.  A type of intestinal bacteria, an overgrowth of which can cause severe diarrhea.  
  Butt Burn = The pain and intense burning sensation of the skin around the anus from the irritation that is caused by   the high levels of digestive fluids in the frequent bowel movements after j-pouch surgery .  
  Pouchitis - Inflammation of the j-pouch, usually due to an overgrowth of bacteria and easily treatable with a round of   antibiotics.  
  UC = Ulcerative colitis, a disease of the large intestine that causes inflammation and tiny bleeding ulcers that cover   the intestinal wall.

Well, I was not successful with my goals from a month ago.  In the days following my last post, I discovered how truly unpredictable this recovery process is.  Occasionally I would have a good day, but more often than not, I would spend most of the day in bed either due to withdrawal symptoms from the prednisone and Norco (lethargy, fever, chills, intense headache) or my j-pouch acting up with urgency, diarrhea, pressure...  I found it impossible to make plans - fitness, social, or otherwise - because there was no telling how I was going to feel from day to day, hour to hour.

I had been waiting to be done with antibiotics because I heard that they can sometimes cause diarrhea.  So I thought that my j-pouch function would improve when I came off of them.  Unfortunately, it was the opposite.  As soon as I stopped the antibiotics, I had uncontrollable diarrhea regardless of what food I ate or what drugs I took.  Before this point, I could somewhat predict or control my j-pouch based on whether I had any foods that cause urgency (chocolate, alcohol, caffeine), or when I took my Norco, since narcotics act as a bowel-slower.  But no matter how much BRAT food I ate or how recently I took the narcotic, I was running to the bathroom with pure liquid BM's.  I had way less control than I did before, and this was the only occasion that caused a bit of anal leakage since my surgery.  In addition, the frequency and consistency of my BM's brought with them some of the worst butt burn I've experienced yet.  During this time, I was going about 10-12 times a day, running to the restroom instead of being able to hold it until it's convenient.  I read that the most common cause of antibiotic-related diarrhea is C diff (an intestinal bacteria), and I also know that these can be symptoms of pouchitis (bacterial infection of the pouch).  So when it lasted longer than a couple days, I called my nurse at UCSF.

Prescription narcotics and Imodium (Loperamide) both help
to slow the bowel and reduce number of bowel movements.
According to her, this j-pouch behavior is perfectly normal when coming off of antibiotics.  She ordered a C diff test for me anyway just to reassure me (which came out negative), but she told me not to worry since this is all still within the normal range of j-pouch adjustment and adaptation.  Another friend with UC told me that the same thing happened to him when he came off antibiotics, and the effects lasted a couple weeks.  So I just put up with it, hoping things would improve soon.  What helped is if I took my Norco along with two Imodium as soon as I woke up.  Then within an hour things would slow down a bit - enough for me to feel a little more comfortable laying around but not enough for me to feel confidnet leaving the house.  Sometimes I would take another one in the afternoon if things were bad, and then  I would take the same doses before bed.  Going through this process was a bit of a pain, but true to form, these symptoms died off in just under two weeks.  I had also started taking probiotics a couple days before things improved, so that probably also played a role in getting my j-pouch to behave again.

On another note, I had an appointment with the urologist in regards to the lesion on my kidney and found out there is an 80% chance that it is cancer, so during the whole appointment, the doctor spoke and planned as if it was cancerous.  However, the tumor is still very small and non-aggressive, so there is very little relative risk, especially now that we know it is there.  Since radiation and chemo do not reach the kidneys, I won't be doing any of that unless it was to spread to other parts of my body, which is highly unlikely (less than 5% chance with how small it is).  So there are three main treatment options: 1) open surgery to remove that part of my kidney, which would leave a big deformed scar on my side,  2) laproscopic surgery, which would normally be the most ideal route, or 3) a long needle through my back to freeze and kill the tumor.  Because of my previous surgeries and infections, he would not feel confident performing lapro surgery on me with all the scar tissue and adhesions I probably have going on.  So he is recommending freezing it with the needle.  This method is 5% less effective than surgery, but if it doesn't work, we can always try it again or opt for open surgery later.  Either way, we decided it would be a good idea to make sure my body is fully recovered before treating the cancer, so summer break sounds like a good time to start treatment.   It seems a bit counterintuitive to know I probably have cancer and just sit on it for several months, but the doctor does not seem at all worried.  He said it's perfectly reasonable to wait 3-6 months.  The doctor did agree, though, that because this type of cancer has no symptoms, if we never found it on the CT scan like we did, then we would have never known it was there until it was way too late... so I'm still considering myself a lucky lady.

Overall, though, I have been doing well.  The last week or so things have been returning to normal.  My latest blood panel (CBC) came back normal, and this is the first time that I don't have some sort of complication (incision, blockage, infection, withdrawals, j-pouch adjustment symptoms, etc.) bringing me down.  I do have another ultrasound next week to make sure the inflammation in my uterus is gone, but the last few days are the most normal I've felt in a very long time.

Today's lunch: adding fiber back into the diet.
Currently I am not taking any bowel slowers on an average day, and I am even adding a lot more fiber to my diet: whole grain bread and small salads with dinner, soon to be increased to full salad meals (starting today).  My frequency is an average of about four times a day (in 24-hrs) if I'm behaving myself, or seven times a day if I eat something like chocolate or alcohol, and I am back to having total control - no leaks, no urgency.  This is all perfectly normal and acceptable to me.  In fact, last night I went out to the bar with my roomie and had five or six rum drinks, taking two Imodium around the time I started drinking, and suffered zero ill effects in the morning.  No increased frequency and no hangover.  One thing I did notice, though, is that the rum didn't affect me as much as I thought it would.  Since I haven't been drinking hardly at all in the last five months, I figured my tolerance would be pretty low.  I don't know if my tolerance just never dropped, if the meds affected it, or if the way I absorb and process alcohol has changed since I lost my colon, but I was just a little buzzed off of those six drinks - not tipsy, not drunk, just buzzed.  This is not a problem or anything, just an observation.  I had a good time either way and am happy I was able to go out and enjoy myself without suffering for it the next day.

Baby wipes and ointments can
also help treat butt burn.
The COCO 9500R bidet:
cleaning with a spray of
water after you go can
help treat butt burn.
Just as a side note, at home I have been alternating between using the bidet (a top-of-the-line COCO bidet with a remote control), baby wipes, or regular TP depending on how my butt feels, as well as rotating between A& D ointment, Aquaphor, or using no ointment at all.  I also always make sure if I leave the house that I have a mini-ziplock of baby wipes and a mini chapstick-sized tube of Aquaphor in my purse.  These come in very handy, as public restroom TP tends to be pretty thin and rough.




Anyway, I am so happy to be feeling back to normal, and I think I'm about ready to get back to my life.  I start back to work on Tuesday, and I'm confident that I'll be able to handle it just fine.  I'm also ready to start working out again and plan to add that in daily after work.  I have been waiting for this day for so long... Time to start living, time to spark up that fighter spirit again, and I'm so excited.

P.S. - Here is the latest pic of my healing scars.   (Click on the photo for an enlarged view.)  I didn't bother trying to get a pic of the laproscopic ones since they are almost invisible now.  In a month or two down the road I will do another post all about the healing incisions and will get a close-up of all five scars for ya.  But so far you can see how much the lower one has faded; I expect the stoma scar above it to do the same in a few weeks.
Healing Incisions: 2/17/13.  The three-inch scar along the panty-line is from
surgery number one (10/4/12 - just over four months out), and the two-inch stoma scar above it is
 from surgery two (12/11/12 - just over two months out).  The lower one is normally covered
by my underwear, and the higher one is normally barely below my pants-line.

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6 comments:

  1. Hope everything is alright. I look at your blog often for updates. Wishing you well! ~M

    ReplyDelete
  2. Brilliant blog, I've spent the last week reading a few pages each night. You have covered lots of things which aren't mentioned in other web descriptions of the procedure.
    Many thanks for the effort you have put in

    Chris

    35 from the UK,

    ReplyDelete
  3. Many thanks for an excellent blog. You're covered a Lt more than some medical descriptions of the whole procedure. I've been reading a bit each night all week. My UC isn't responding to any of the drugs out there, I'm now on a new drug trial as a last resort. You're blog has made me a lot less worried about the unknown.

    Many thanks

    Chris, 35 from the UK

    ReplyDelete
  4. Keep fighting. My heart goes out to you.

    ReplyDelete
  5. didn't know what profile to select but - I had unsuccessful surgery in 1991 almost killed me - but whatever - for anyone that might see this and understand what " butt burn " is , use DESITIN cream on that area - it is white thick cream and eliminates the burn - I tried it first at the idea of my wife and it worked great - my loser surgeon asked what the white stuff was - told him and he started recommending it to other patients as his idea - oh well - the law suit cost him.

    ReplyDelete

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