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Ulcerative Colitis
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Posted 10/2/2007 2:09 PM (GMT -8)
hi folks- well, my date for surgery is November 14.... I met with the surgeon today at the Lahey Clinic in Burlington, Mass. I am choosing a permanent ileostomy, not a jpouch. There are too many "what if's" associated with the pouch, plus the 2 or more surgeries. It's just not for me. I have been flaring horribly for over a year now, have been hospitalized once already due to infections brought on by the many immunosuppresants I take, have become steroid dependent... & even on 60mgs of pred/day, I still have blood every time I use the bathroom. I am done. Yes, I'm scared & nervous, but I am very excited to be putting the past 2-3 years of illness behind me & focus on healing myself. Get this- after surgery, no meds, no dietary restrictions, no hemmorhoids, no running to the bathroom... I will never be straining & sweating on a toilet bowl again! Only to produce blood! Yes!!!! yeah   I feel good about my decision- I sought out 2nd opinions, & all doctors consulted felt that surgery was my best option. I do have one more remicade infusion in October, a double dose of it... I have very little hope for it doing anything, but hope dies hard. My docs feel that my chances of achieveing med induced remission are 10-20%. So barring some medical miracle, I will not be posting here much longer. I will let everyone know how the surgery goes, of course, but seeing as I don't have the Net at home it may be tough. Good luck, all of you... you've helped me a great deal. I wish everyone the best!
Posted 10/2/2007 2:33 PM (GMT -8)
Hey Eva Lou! Congrats on your decision. It sounds like you really did your reseach and thought it through. Please keep us posted along the way!
Posted 10/2/2007 3:48 PM (GMT -8)
Eva,

Good luck with your surgery. I am planning for surgery after the New Year and when I am in Remission. Right now I am flaring and I am planning on going into the Hospital very soon (as soon as my insurance approves it) and I will be using IV Cyclosporine as a treatment. My GI says with this course of treatment I have a good chance of only needing a 1-step surgery for the J-pouch but need to be in remission first. Cyclosporine got me into remission last time.

--Keith
Posted 10/2/2007 6:37 PM (GMT -8)
Good luck with the surgery and please keep us posted on how yu are doing.

Janice
Posted 10/3/2007 12:03 PM (GMT -8)
I will definitely keep everyone posted- I have just had it with UC, meds, & all the associated health problems that go along with them. I'm ready to feel well & heal myself, ya know? They seem to think it's become pancolitis at this point. Good luck to you, Keith- a GI I saw talked about cyclosporine to me also, as a "rescue" drug to put people into remission. I think they generally use it to get you well enough to go thru surgery. You keep posting also- I'll be curious to hear how it works out for you. Smiles, people!

Posted 10/3/2007 12:36 PM (GMT -8)
Eva,

I have Pancolitis too... I took Cyclosporine 2 years ago and along with 6-mp it put me into remission. The only reason that I flared was that I stopped taking 6-mp; I wanted to know how I would feel without the 6-mp incase I had surgery.

The first time Cyclosporine calmed my system down within 4 days.... I'm pretty sure that it will work for me again the same time line.

--Keith
Posted 10/3/2007 12:40 PM (GMT -8)
Have you visited the site www.jpouch.org ?

--Keith
Posted 10/3/2007 12:52 PM (GMT -8)

Congratulations and good luck!!

I had my surgery in June 07.  I would do it again in a second.  I also chose the permanent ileostomy instead of the J-Pouch and I am totally content with my decision.  Your going to be so happy to get your life back and nooooo meds.

Keep us posted.

April

Posted 10/3/2007 1:57 PM (GMT -8)

Keith- I have visited jpouch.org. I plan to go there now, actually! At first I thought I wanted a jpouch, but after really researching it & thinking it over, I think the perm ileostomy is best for me. I'm the sort of person where if something can go wrong, it'll go wrong, & the 40% of people who get pouchitis... that's too high! The surgeon described it to me as people with a pouch & pouchitis telling him "My UC came back!". I would die. Plus the thought of at least 2 surgeries scares me off. The high # of bm's a day, the "butt burn", all that just throws me. I know an ileosotmy is going to be no picnic, but it's a fairly straightforward, simple surgery, & a simple system, know what I mean? The surgeon also told me that there is really no test to differentiate between U"C & Crohns until the colon is out & they can do a pathology report, & the y prefer not to do jpouches in Crohns patients as the inflammation just returns. There are just too many "what if's?" for me... althouhg I do know of many people who absolutely love their jpouch!

Blue- thanks! I am excited to be moving ahead- it's nice to hear from people who love living life & are content with their ileo. Was it tough to adjust, mentally? I know it'll be REALLY weird initially, but I am in a good mental place for this. I feel good about it, so...

Posted 10/3/2007 2:00 PM (GMT -8)
Good luck with your surgery. You're going to have to come back when you are able after the surgery to let us know how it went.
Posted 10/3/2007 2:05 PM (GMT -8)
Good luck.
Posted 10/3/2007 2:15 PM (GMT -8)
Eva,

There is a difference between pouchitis and chronic pouchitis.... I think that chronic pouchitis is very rare and the occasional pouchitis is very easy to treat.

I am the exact opposite of you, if I had to have a permanent bag I would not be happy.

Good luck with your surgery.

--Keith
Posted 10/3/2007 3:05 PM (GMT -8)
you too, Keith- I hope the cyclosporine gets you well ASAP. I have a feeling we'll both be happy with our surgical choices- hey, anything's better than this right? :-)
Posted 10/4/2007 6:40 AM (GMT -8)

Hi again,

To answer your question about mentally adjusting.  I just turned 40 and I've been married for 20 years.  I had been so sick for so long that I really didn't give it much thought at first to the mental aspect, I was just so happy to be well.  I will tell you that I have not once regretted it.  I have never had a day where I think "why me".  My husband tells me all the time or if someone asks him about it that everyone poops, mine just goes in a bag first.  Its no big deal.  And its not really like poo.  Its really just liquid or paste consistancy.  It takes me about the same amount of time to empty the bag as it does to urinate, so its quick.  There have been a few days (PMS days) when I just get irritated about everything in general, so of course the bag is one of those things.  But it has never interfered with anything I want to do.  I wear my same clothes, do the same things I did before I got sick.  Swim, amusement parks, walks, etc.  I don't know about everyone but I can feel when I need to empty the bag without actually going to the restroom to look. 

I really think  you will be pleased with the outcome.  I suppose if I were 20 and was a swimsuit model then I would have had a harder time dealing with it, but I'm just a regular 40 year old woman.  Hope that helps you.

Blue85

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