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, December 2, 2012

Ready for Takedown

  BM = bowel movement          proctocolectomy = surgical removal of both the rectum and colon  
  ostomy = an artificial opening for the elimination of bodily wastes (includes ileostomy, colostomy, urostomy, jejunostomy, etc.)  
  butt burn = the intense burning sensation of the skin around the anus resulting from the irritation that is caused by the high levels of digestive fluids and acidity of frequent bowel movements after j-pouch surgery.  

The "takedown".  It sounds like some epic move at the end of a climactic battle that will wipe out your enemy for good.  In the j-pouch world, though, it is not quite so dramatic; it's the reversal of the temporary ileostomy in order to hook up the now-healed j-pouch for use.  Even though this surgery is far less invasive, many patients are more afraid of this step than the first surgery (or surgeries) because of the wide variety of potential outcomes, and I am one of them.

FEARS:

At least with the first surgery, you know what to expect: you'll be living with an ostomy bag for a while, which is not fun, but it's manageable, and your health will return at an astounding rate, which is amazing.  Before surgery one, I was in so much pain and misery from my disease that I was counting down the days until my surgery, and all I could think about was getting relief.  This time around, I'm already healthy and feeling fine, especially since the drug withdrawals have finally died off, but the reversal of my ileostomy could possibly leave me tied to the toilet again with irritating and even painful symptoms.

Some patients come out of the takedown with hardly any negative effects; they start off going to the bathroom 4-8 times a day (which is the expected long-term outcome after j-pouch surgery), and their pouches function perfectly from day one.  I even read about one woman who returned to work within two weeks of her takedown.  Others, though, experience sometimes debilitating issues or complications that may include high BM frequency (10-15+ times per day), anal leakage, butt burn, painful gas, trouble emptying, painful cramping and spasms, constant urge to defecate, sexual dysfunction, diarrhea, pouchitis, fistulas, adhesions, fissures, blockages, strictures, and the list goes on.  Most people, however, are somewhere in the middle, with a few minimal effects that improve over time and eventually result in a healthy, functioning j-pouch.

The unused part of the intestine still produces mucous (usually used to lubricate as food passes through), which drains out of my j-pouch several times a day when I sit on the toilet.  (This is perfectly normal in between surgeries.)  Sometimes I feel urgency and the need to go, even when there is little or nothing there.  These sensations worry me a little because I wonder if it will be even worse after takedown when there is more passing through than just mucous.  However, when I start to feel nervous, I have to keep reminding myself that most j-pouch outcomes are very successful, and I mentally review some of the statistics from medical studies I've read.  (See my list of Clinical Studies.)  On the Frequently Asked Questions page of j-pouch.org, the expert medical professional who has been in the "trenches" of this field for many years responded with the following quote when asked if anyone regrets j-pouch surgery:
Most patients having had this surgery are very satisfied. Almost all persons who chose this surgery would choose it again if given the choice. No more pills, no pain, no bloody diarrhea. Many people talk about "waiting for the other shoe to drop" (the next attack as it were) because they have gotten so used to living with the disappointments of chronic illness. As time passes you get past the feeling that disappointment is just around the corner. Forget it, it's out of here. This is your new life.
Up until two months ago, I had lived with ulcerative colitis for seventeen years.  So when I read those last two sentences, I wanted to cry.

EXCITEMENTS:

It is true that one part of me is scared, but for the reason in that quote, the other part of me is excited.  Right after my proctocolectomy, I felt immediately better than before, and so my attitude toward any obstacles I had to overcome to regain my health was a positive one; I would tackle them with gusto and a smile on my face.  However, it has now been two months since that surgery gave me my health back.  Now that I have been enjoying some of the benefits that have come along with that regained health (social life, travel, increased energy, returned sex drive, etc), I feel like I'm ready to have my life back, and I want more.  It's like getting a taste of something delicious but not being allowed to finish off the full serving.  I'm starting to get ambitious and greedy, and I am becoming increasingly more annoyed by the little things that I still feel have been holding me back.  I'm impatient about being able to run and lift weights again.  About resuming my dating life without feeling self-conscious about an external bag that holds my bodily waste.  About eventually getting to a diet where I can eat whatever I want (i.e. salads, whole grains, fresh fruit, etc.) without worrying about blockages.  About looking down and seeing my tummy back to the way it was, maybe with a little scar, but without a piece of my insides sticking out of it.  About going for a walk or a hike without my stoma and appliance area becoming itchy and uncomfortable.... And I can't wait to be on the other side of this.  To finally feel like I really truly have my life and my body back.  All of these things that I have to look forward to after recovery from this next surgery makes me excited and full of anticipation.

DIET & WEIGHT:

After my first surgery, once the diseased part of my intestine was gone, I wanted to eat everything in sight, and I was pretty much stuffing my face with large amounts of comfort and junk food for about a month straight, but I didn't mind a bit of weight gain from my indulgences since my disease had been literally starving me before that.  Plus, I thought I kind of deserved a little gluttony after everything I'd been through.  Because of my post-op diet restrictions (which include no veggies or whole grains); my post-op exercise restrictions (ha, none allowed); my returned health; and the effects of the prednisone, I gained almost twenty pounds in the course of three or four weeks.  (Heh, that's a lot.)  On a frame of 5'7", my lowest weight - right after surgery - was 123 lbs., and now I weigh somewhere around 140 (give or take a pound depending on the day).

I am back to a healthy weight for my height, though a little flabbier than I'd like.  In order to stop gaining additional weight, I have reigned in my food intake and have been eating things like protein shakes, bananas, yogurt, Metamucil wafers, chicken, rice, tuna, eggs, Odwalla Superfood, peanut butter, applesauce... basically trying to eat healthy while still on somewhat of a low-residue diet.  Fortunately, the ravenous food cravings I was experiencing for that month seem to have pretty much disappeared.  I don't know if it's due to finally being off of the prednisone, or if my body just realizes it's no longer starving and doesn't need to eat everything in sight anymore, or even just having my fill of it all, but my appetite is back to normal.  Junk food is still tasty and a little tempting, but I don't feel like I HAVE to have it.  My weight has stabilized,and though it would be nice to even lose a pound or two, I'm really not too concerned with it since I know that the upcoming surgical process alone followed by the post-op diet restrictions will cause me to drop a few pounds.  I'll see where I end up before I worry about getting to any kind of goal weight.  Plus, I kind of feel like I want to enjoy my last few days of dietary freedom before it gets highly restricted again right after surgery.

ACTIVITY LEVEL:

I am just barely more than a week away from my takedown (wow- it's still hard to believe), and I have to say I thought I would have been more active during this last month.  With my returned health, I thought I would be walking, hiking, visiting local sites, going out to bars, maybe even throwing a little jogging or mild strength-training in.  But the whole drug withdrawal process kind of threw a monkey-wrench in that whole plan.

When you come off of this type of prescription drug dependency (prednisone and pain-killers), you have to do it slowly, tapering down by fractions of a dose each week.  Every time I decrease the dosage, my body feels the lack of chemical it needs to function properly before it starts increasing it's own production of them again, and I just feel really crummy: lethargic, weak, shaky, light-headed, and having trouble regulating my own body temperature, almost like I have the flu.  By the time I start feeling okay again, it's time to take another step down on the dosage.  Since this happens every week over the course of a month or two, I'm kind of down for the count that entire taper period.  If you combine that with the annoyance of the ileostomy bag, it just kind of takes the fun out of those adventures I thought I'd be having.  It has just been the last couple days that the last of the drug withdrawal effects have gone, and since I'm now only ten days away from step two, I've sort of become resigned to just waiting until after my takedown to really get back into the swing of things in regards to exercise and outdoor activities.

However, I have to say I have thoroughly enjoyed a few days of returned social life here before I check myself in to the hospital soon.  Last Thursday I had a few friends over for snacks and movie night, which was totally fun.  On Friday I went out on my first (and probably only) date while living with an ileostomy, got my drink on, and had a good time getting to know a new friend.  Then the next day, I visited with my cousin and her hubby: we played a board game, watched a little TV, got a manicure, and caught up on chit-chat.   (Okay, hubby didn't join in on the mani.)  I also have a couple more social things planned for this week before I'm laid up again in post-op recovery.

BEFORE I KNOW IT...

My pre-op exams are scheduled for this coming Friday, and then four days later will be my takedown surgery.  I am both nervous and excited.  Before the takedown, we still have the possibility that things will turn out great.  But once that final surgery happens, that's it - no more unknown factors - I'm stuck with the result, whatever it may be.  It's like the big reveal: will all this really give me my life back, or will it all have been for nothing?  But I know that all of the variables involved in my own surgical situation fall in my favor, and I really do have faith in my surgeon and high hopes for my outcome.  Either way, I will continue to chronicle my adventures, j-pouch and all.



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3 comments:

  1. Well said! Best of luck to you during and after your take-down surgery! I'm definitely one of the ones who would make the choice to go through all of this again if I had to.

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  2. thank you for writing this. I have only had UC since August 2011. It hit me fast and hard. By February 2012 I had lost so much weight and blood that i had to be hospitalized for 9 days. I went from 215 to 174. I was on Remicade, Prednisone, and all the various anti-inflammatory drugs that go along with it. They got the flare up calmed down and i was discharged. I made it until the end of May and that's when i developed toxic megacolon. I was running a temp of 106 and couldn't walk. My brother had to carry me to the vehicle and drive me to the hospital. I was put in ICU and the next day airlifted to STL Barnes Jewish. I had emergency surgery where they did a total colectomy and woke up with an end illeostomy. I am military and that is how i support my wife and three children so i was worried that i was going to lose my job. I did my research and found that if all went to plan, I would be able to return to duty. I had my second surgery Sep 10th. I will have my last surgery December 29th. I am excited and scared to find out how life will be. I would love to keep in contact and know how things are going with you. sancho1702@yahoo.com

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  3. Hi my son has a jpouch but is now back with his 3rd ileostomy. We are hoping for another pullthrough in the future. Good luck to you

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