Moderate Pancolitis + Remi/Surgery

The only information I've seen is that 15-20% of people with UC end up needing surgery.

All of the things you mention are slim possibilities, as are serious complications from the drugs we take. As in most of life, there just aren't any sure things. At this point, it really sounds as if you have too many questions and concerns to proceed with surgery. Remember, you don't have to make a decision today, tomorrow or this year. Sometimes a few counseling sessions can help, or talking with people who have successful treatment - both surgical and medical.

Give yourself the time you need to really feel sure about your decision. That will increase your chances of success if you do have surgery.

It's normal to have a fear of surgery.

I have not met one UC surgery person who has regretted surgery, even those in the "failed" pouch category. Everyone states that there is nothing better than being in good health....finally, even if they had to lose their pouch to a permanent ostomy. Also, I don't believe there is a 10% failure rate; but it's a 90% rate that are satisfied with the outcome.

Sue

i know that you are scared about surgery and you should be, it wouldnt' be normal if you weren't That being said, and this is much easier said than done, you have to be able to work through that fear and come to grips with the fact that the surgery is going to CURE you. Now, if you dont' feel like you can do that yet, then you should try your other options, see if those help you. And i also dont' mean that you shouldn't feel scared at all, cause you probably will, i was so ready for surgery i was actually going to take it out myself if i couldnt' get a dr too, but i was still scared.
I know that you are worried about the j-pouch failing and that you will have to wear the bag forever, try not to look at that like a death sentence, i think realizing that wearign the bag is really not a horrible thing, will help you feel more comfortable with surgery. You may want to try to talk to a jpoucher and someone with a bag, just to help you feel better about the small chance you end up with a bag. You will have one for a few months between the surgeries anyway. And i promise you, it is not bad, not at all. YOu may even find you like it, lol. But you will be healthy, and that is all that really matters

ComedyDork said...

 What if I'm in that 10% failure rate for jpouch and I was better off keeping my colon?

From my research there is around a 10% reversal rate not failure rate.  If this is the case then there is many reasons for having a reversal without it being a "failure".  I have heard some people have it reversed because of the j-pouch not meeting their expectations.  On the Mayo Clinics site they don't give the percentage of people who reverse because of severe complications they just have percentages of people who get pouchitis and they show that the longer you have the j-pouch the more apt you are to get pouchitis.  So after subtracting out the people who "elect" to have a reversal for personal reasons and not because of severe complications the percentage could be more like 5%.

 What if I have horrible incontinence w/ jpouch?

Even if you had incontinence with UC this is not a precursor that you wil have it with the j-pouch.  The incontinence with UC is normally triggered because of inflammation in the rectum.  What happens is the inflammation is so bad that any waste setting against it causes your system to expel the waste to get rid of the irritation.  When you have a colectomy the UC goes with the colon.  Pouchitis and cuffitis can cause temporary incontinence the same way (body gets rid of waste to stop waste from causing irritation) but it is normally easily corrected with a quick round of medicines and you are back to normal.  At least that is the way my GI explained it to me.

 The main thing Remi is helping with right now is not having to run to the bathroom. What if I have 10+ BMs/day w/ jpouch?

From having my ileostomy I can make an assumption with hopefully some basis in fact.  When I eat my ileo produces, when I don't, it don't.  I would then assume that a person would have an ability to control the number of bm's and when they take place by the timing of their eating.  At a minimum it should be somewhat predictable anyway.  From what I understand from j-pouchers the bm's are nothing like what you have become use to.  Since the waste has no ability to be real firm and such that it is more like urinating when comparing time and effort.

What if it is found that I have Crohn's after having the surgery?

Your doctor/surgeon will more then likely make sure that they feel confident that it is UC prior to proceeding.  My surgeon set it up for a three step surgery, if I choose, and that gave them time to send my colon to the lab to do more checking to go along with what biopsies and such they already have.  With the pathology, every test has shown UC.  If they would have found mine to be Crohn's my entire colon was affected so it needed to be removed anyway. 

 I don't want wear the bag for the rest of my life!

I can understand your concern here.  When a person, standing on the outside, thinks about a bag for the rest of their life only negative thoughts come to mind.  Since I have had the bag I am tickled with it.  Because of it I no longer suffer from the symptoms of UC (tired, pain, multiple trips to the restroom, incontinence, medication side effects, etc.).  I have possibly had an easier time than most with adjusting to it but I actually like the ability to completely control when I empty.  If I am going to a function where it might be inconvenient for hours to get to a restroom I empty just prior and I am good for a while.  If I don't want a lot of output into the bag, I slow down on eating.  Even if you were to have complications I would assume it would be many years before the doctors would come to the conclusion that you would need a permanent ileostomy, they would try all they could t get it to work for you as long as that is what you wanted.

 

With all of that said, I was looking toward j-pouch surgery when I started this process but have since started to lean toward permanent ileostomy.  With the research I have done I see that the j-pouch is almost as liberating as the bag but not completely.  The bag has just a little more "control" than the j-pouch and for myself I so far have not had any leakage and appliance issues (knock on wood).  Now, 6 months ago I would have never even entertained the idea of having a bag but because of all that has happened with my disease since then I enjoy my bag and don't think I am going to get rid of "Leo".  Each person has different circumstances that lead them to where they are, I just hope that some of what I said can ease some of the worry you have.  I think your worry is stemming from putting the possibility of failure out of context.

 

John

I just went through surgery 4 months ago and had my entire colon removed and consider myself cured of UC. I had moderate-->severe pancolitis for a year. The initial flare never went away even with the large doses of prednisone and Asacol I was taking. My UC symptoms never improved after the initial year of drug treatment. I was up all night and going 20+ times a day. I felt my self slowly dying and was constantly confined to the house and sleeping all the time. Life at that point wasn't worth living, so I figured surgery and facing those risks would be better than how I was living with UC at that time. I waited a year with the medicine route and I didn't want to "graduate" to imuran or remicade (which BTW is classified as a chemotherapy drug) because I felt their long term "side" effects were worse than UC itself (like cancer-->instant death). Who know what taking that stuff for 50 years will do to your otherwise healthy organs.

I was in such bad shape from a year of UC and prednisone, that all that they could do for my first stage surgery was to remove the colon. I had extensive testing to rule out Crohn's disease before this surgery. A little fact missing on the prednisone drug sheet is that taking prednisone (or any steroid) long term (more than 3 months) turns your internal organ walls into the consistency of butter, therefore, they cannot hold the stitches or staples when they make the j-pouch. Therefore, my second surgery this September will be to make the j-pouch out of the small intestine (they wanted me to wait 6 months to allow the organ walls to heal back to normal after discontinuing prednisone), and a third surgery (3 months later) to reverse the ileostomy, although my surgeon said he might be able to combine these two surgeries into one. He won't know until he opens me up again.

Anyway, ironically, the way I'm living now is the "worst case" scenario if the j-pouch fails - having a permanent end-ileostomy (although mine is temporary now). Having a bag is actually very easy and not as bad as you may think. You can actually "control" when you need to go to the bathroom, there is no smell, other than when you empty the bag (and the smell is nothing worse than before-some people get fixated on that). Also, here are the benefits to surgery that seem to get left out. With UC, No colon = no more problems. The constant dull UC pain is gone, urgency is gone, you can sleep throughout the entire night (8+ hours), you are off all of the UC pills and their side effects, you are not wrecking your other organs with the drugs (i.e. liver, kidneys, bones), you can eat and drink everything, and you can travel and do just about everything you did before you had UC and you feel normal/healthy again. I even swim and hang out in the hot tub. For me, the bag thing was easy to get use to. I never regretted having surgery and would do it over again if I had to. The bag thing just becomes a part of life after a few months, just like wearing contacts. My energy levels and health have returned entirely back to normal. I'm as healthy if not healthier than I was before I got UC. You cannot "feel" that your colon is missing other than seeing the bag when you lift up your shirt. I empty my pouch every 3 to 4 hours during the day and before I go to bed and first thing when I wake up. I never had any leaks and I have a weekly routine with the pouching system. To me, I would recommend surgery to anyone who is suffering from UC or from the side effects of the medicines used to treat UC. Living with the "worst case" j-pouch scenario (pouch failure-->permanent ileostomy) is a million times better than what your experiencing now with UC. It bothers me that so many people are afraid of the surgery and suffer so long with this disease. If they could only go through what I have experienced, I would think they would come to the conclusion that surgery is really the cure for the disease.

The pain from my first surgery (open 10' incision in my belly) lasted about 4 weeks (where I needed pain killers). I then had a dull abdominal pain for about 6 more weeks. about 12 weeks following surgery, I could get around easily and not really experience any pain, but I did tire quickly doing any activity or physical work. about 4 months after surgery (where I'm at now), I'm back to my normal self...energy and strength wise. I can now work all day in the yard, cutting the lawn, weeding, transplanting shrubs, working on the house, and I still have some energy left over in the evening. For me, surgery saved my life and cured me of UC. I'm now glad that I can resume a normal life again without having to deal with all of the UC issues anymore. What is life if you cannot eat, drink and be happy!!!

You have only been diagnosed with UC for less than 1 year, it doesn’t really seem as if you have explored and exhausted all your treatment options, you are freaking out, you are 19. All these tell me you are not in the right space to make a decision about surgery. Also it seems you are in your first flare, it is often difficult to get the first flare under control, it was for me and that was nearly 25 years ago. My thoughts, and no one here can speak for anyone other than themselves, surgery is always in the back pocket it is an option but not a desirable one verses having a relatively well functioning colon.  So, do your due diligence by studying your disease, exhausting your treatment options, getting another GI if you are dissatisfied with your current one and I think this is very important seeing what level of discomfort you can live with because your bowel function will likely never be completely normal surgery or no, therefore we all need to come to terms and acceptance of this before making irreversible decisions.  Humans are very adaptable and it is possible to live with this disease and have a fulfilling life, the key being the understanding that the disease is not me that my identity is not wrapped up in UC. This and in addition reducing the symptoms to the level of a mere inconvenience and not something that my attention is always drawn towards is where all treatments need be focused.

Mark & Megan--I'm currently 4 hours away from my college, so even if they do offer free counseling, it's not an option right now! Oh, and I couldn't get that video to work--I think it said the video is no longer available.

John--I'm glad that "Leo" and the bag are doing well for you! Your experience makes the bag sound less daunting.

GISGuy--I'm glad things are working out for you as well! I can't believe your GI let you skip Imuran and Remicade! My GI wouldn't even let me talk about surgery until after my first Remi infusion when I said that it hadn't helped much.

Severin--My GI said that he would not sign me off on Humira and that there are no trials in the area for any new UC meds anyway. And I don't know if I can wait 3 months on Remi either...I'm not able to do anything now and I start college in a month and a half. And if I'm not better, there's no way I'll be able to handle classes. And my insurance won't cover me if I'm not in school; it will, however, cover me if I have surgery that's recommended by a surgeon.

rdm--I'm with summerstorm. I don't think it matters how long I've had UC or how old I am--I'm considering surgery b/c none of the meds are working. I've tried everything but prednisone, which is a short-term therapy anyway that I would have to use w/ other meds. I have exhausted almost all of my options. And this is my second flare. My first flare went into remission just by 6 Asacol tablets/day (ah, the good ol' days!).

I know that the risk of lymphoma is small when taking Remi, but I've read cases of people getting lupus from Remi--how common (or not) is that?