Considering Surgery

Hello - I am in the middle of yet another flare, and have arrived at a point I almost always do: I am considering surgery. I was diagnosed with UC in March of 2008, and wasn't able to get it under control and in remission until August of 2009. Since then, I have had flares about every year and a half. My flares are active for about 8-10 months, and I've never had what I would describe as a "mild" flare. They come on strong and are very difficult to get under control. Prednisone hasn't worked at all for the last 3 or 4 flares. I've tried cort enemas, suppositories, Azacol, 6MP, Humira, and just had my third Remicade infusion (which was a higher dose than the first two) several weeks ago. Still no significant improvement. I can't help but think that, even with the new inconveniences it may bring with it, being free from pain and having to plan everything around bathroom locations would be worth it.
Everything I seem to be reading from folks who have had the surgery is that it was the best decision they've ever made. I worry I'm only looking for that type of response, so I'd like to solicit feedback from people who have gone ahead with it. I'd love to hear your experience, why it was worth it or not worth it, what you wished you had known before it, etc. Thanks!

if you haven't tried any diet changes, now might be a good time - many folks have found significant improvement when meds were ineffective -

go ahead and talk to some surgeons, get all the information you're looking for, and in the mean time try a few different things - avoiding gluten, sugar, and dairy is a good place to start - or go crazy and give up all processed foods too

good luck going forward -

I have Crohns Colitis so wasn't a candidate for jpouch but because my disease was always in my lower colon/rectum I was a good candidate for ileostomy. I had the option to try Xeljanz but I hit the point where my flares were too painful and greatly affecting the quality of my life. My ultimate reason was I didn't want another flare whether it was 6 months or 6 years later.

The first couple months after surgery were rough. It was a tough recovery but it was definitly worth it. Having the ostomy is a small inconvenience for what I gained. I have no pain, eat what I want, and my energy is like before my diagnosis. Most of all I am healthy! All my bloodwork is normal which hasn't happened in 5 years!

I was like you too, sick as much as in remission - maybe sick more than in remission. Finally, my last flare up, it went on for MONTHS. 18+ months and there was no end in sight. I tried everything, even at double doses. The only thing left was clinical trials. My GI led me to believe I shouldn't bother, i was giving up too much of my life. I agreed. it was time for me to get on with life. Boy am I thankful I made that decision when I did. Life now is so much better. I've been to the beach more times since surgery than I had been the entire time I had UC. I've traveled on a plane already - was too scared to when I had UC. I eat what I want. Now, there are some downsides too. I hate to paint this perfect picture. I go to the bathroom much more than I did presurgery. It's on my own terms - which is a nice change. I used to be a slave to BMs, now I go when I want - but more than I used to. I also have had some issues with my butt getting raw from wiping more... There are little things that can be annoying, but for me it's been small potatoes compared to what I was dealing with. Surgery itself, is a mental-youknowwhat. It's really the most awful and scary thing you could possibly imagine. I read other people stories and I used to think WOW, that person is a way stronger, more brave person than I am. Now I have my own story and I might be that person to someone else. I also got my figure back, the one I had before prednisone, that gave me some newfound confidence. It's been a wild ride. I would never for one second consider going back to living how I was... You have to take into consideration that there was no hope for me, so that makes it easier for me to see the positive side. No matter how well you do on a UC treatment, a flare could be looming. I don't want to live the rest of my life wondering when. Even with a jpouch, there can be pouchitis, but you will have to speak with your GI/surgeon about the risk vs reward and make a decision. it's not easy, but for some of us, it's all we have.

Soynomore- for me from the bag perspective that is one reason I like it, its like I never go. To say I love not using my butt is putting it mildly! Now that my body has adjusted I only empty 4-5 times a day which I can wait and do when I pee so no extra trips to the bathroom. I am also able to sleep through the night.

But at one point I was going 20-30 times a day, several times during the night. So for me waking up with a bag but never feeling the urge to go to the bathroom again was amazing!

I had surgery for an end ileostomy around July. Needless to say, I'm certainly glad that I made that decision. I was just like you. None of the medications worked for me and I was finding myself in the ER more and more because of flare ups. Before surgery I was scared. I did tons of research and talked to people with ostomies. It's important to do lots and lots of research so that you are prepared. Recovering was definitely not easy, but it was all worth it in the end. It's a great feeling to not have to worry about symptoms and flare ups anymore. I'm also currently in school, so I'm able to focus in class and be comfortable around my friends. Like notsosicklygirl said, regaining the figure that I had before prednisone was great. It helped me build a lot of confidence as well. I can eat whatever I want, and enjoy foods the way I used to. But of course it has its downsides. Having an ostomy means taking care of your appliance. You can have leakages, get rashes, and might even have watery stool. But for me, it's nothing compared to my life before surgery. Everything is easily resolvable. I'm not sure if I'm going to proceed with the next surgery any time soon, but I've heard great things about that too.

Best of luck!

Hey,

I've posted on here before after both of my surgeries - feel free to search for it.

Losing my colon gave me my life back, I am very happy with my decision to go for it. It was absolutely worth it. Life with my end-ileo was great, I was healthy and able to find such a relaxed frame of mind (as the urgency issue was gone overnight, which transformed the world and my place in it). I would have been happy to have the ileo for longer (even forever), but chose to have j-pouch surgery after 3 months. I've had my j-pouch for a month now, and am glad I had that surgery too. For me, the only complication of having the ileo (once I found the right bag & barrier ring combo for me) was the daily routine of changing the bag, trying to make sure my skin under the bag wasn't getting irritated, etc. It was a tiny price to pay in return for a free (and UC-free) life again, and one I was glad to pay. But life with the j-pouch seems less complicated and more 'natural' so far. I don't have UC, I don't have urgency (and when I'm out and need to empty the j-pouch, I can hold it no problem), I'm not on any meds, and feel really well.

In a way, I wish I could have had this surgery after my diagnosis - rather than spend 4 years flaring, trying and failing drugs, and missing out on a lot... But then I don't know if I would have appreciated ileostomy/j-pouch life quite as much without that experience.

I too have a long history here of posting my daughter's journey with this disease. You can search the Katmom stories in case they help.
Surgery wasn't an easy decision and our timing was right. Too early and we would have wondered "what if", too late and any sicker, and her recovery would have been extended.
As it worked, the 3 step was darn near textbook perfect-great surgeon at U of Chgo(Hurst). Life resumed and the urgency which damaged her teenage years was gone. Not perfect, but so so much better. She doesn't even think about it much- I have PTSD over it, but that's another story (lol). The healthier you can be inbound for surgery, the quicker the recovery.
Best of luck.

We've had a few people with pocuhitis.

Look up the following members to see some less than rosey stories:

Firstly, bootstrap aka RonnieLee - iPoop posted her blog above. She's been battling chronic pouchitis - she states that in her most recent post. She also posted something about the "realities of living with a jpouch" and much of it is true. The noises, the cleaning up... probably worse with pouchitis - in better state than presurgery regardless.

SolomonSeal - got a jpouch and hates it.

Blksteeda - pouchitis and many unexpected issues throughout surgery - in much better state than presurgery

ks1905 - pouchitis - in much better state than presurgery

Silent Lucidity - Nonfunctional pouch, reverted to ostomy.

It's important to realize that there are people who aren't 100% happy after. Good to have perspective from both sides and understand why the decision is so difficult and risky. The stat says 90% of people are happy....

If you like this is my journey through surgery, it's quite a few pages...

https://www.healingwell.com/community/default.aspx?f=38&m=3489398