J pouch vs continued medical treatment for UC

quote:

In reading through some of your posts, now I wonder if the surgery may be even worse.

This is a support board where mostly people with problem pouches come, so you should not be drawing any conclusions based on the demographic here. Probably the majority of people with healthy pouches have never visited this board.

Regarding the medication vs. surgery decision, that is not all that it comes down to. There is also the risk of cancer or toxic megacolon, especially if the meds are not working. If the meds are not working, you are delaying the inevitable and the only question is whether surgery will be on your terms or terms that are dictated to you because you are too far gone. If you wait until you are too sick, chances for a good surgical result go down. Surgeons are not magicians; the more they have to work with, the better of a job they can do.

You sound exactly like I did before my surgery. Having this procedure done was the best decsion I ever made. Don't let the things you read discourage you. The fact is that complications of the major kind are rare and these procedures go off without a hitch everyday. I won't sugar coat it though...the surgeries are rough but the end result is worth it. I wish I hadn't waited so long and had it done sooner. I was on so many drugs (prednisone really messed me up) and it's such a relief to be off all of them now. Good luck with your decision

I also do not regret my decision, although I waited too long and things got dicy. When they took my colon out it was dissolving in my surgeon's hands (according to him) and I was apparently not far away from discovering Toxic Megacolon City. I was kind of surprised things had gotten that bad.

My recovery was long and brutal and filled with complications, but I survived them all and it was worth it. Life is much better now than before when I had UC. I say this despite 18 years of meds to treat pouchitis which has been a lesser foe than UC was.

I did stay on the medication as long as I could and have about 5 or 6 medications to add on top of your list. The only thing that ever helped me out which was causing damage and masking my issues was high doses of prednisone. It was the same routine over and over I would get admitted to the hospital for a flare, be put on fluids and IV steroids, liquid diet for a couple days and then get better and sent home with a script for a steroid taper then by the time I got down to about 10 or 5 mg of prednisone have another flare up and back to the hospital. This routine started happening in shorter and shorter time spans from each other. I had a consult with a surgeon the one time and him and my GI dr agreed that trying to switch my meds around was the route we wanted to go before I committed to surgery. After that time in the hospital I did a lot of research on the surgery and made sure I jumped on this site to find out what I was getting myself into and about 3 weeks later I landed back in the hospital. I knew after 10 years of having UC you start to have a high risk of colon cancer especially how active mine was and I knew I couldn't live on steroids for the rest of my life because it would of fixed one issue and destroyed the rest of my body in the meantime. The last time I was in the hospital they did a sigmoidoscopy and after my GI got the results he said you need to talk to the surgeon because if you don't opt in to this surgery yourself now while you are the least bit healthy to decrease your recovery time then you will eventually be in here in an emergency situation where your colon burst due to toxic megacolon and you will have a long tough recovery. That's when I knew it was time for me to take control and have this done on my terms. I had a consult with the surgeon in his office about a week later and went over all the risks and benefits and so on and we set a date for the surgery. I used to regret the surgery in the beginning because it is a long tough recovery and you do go through some tough times but I always thought back on my UC days and told myself I would of ended up here anyway maybe under worse conditions or with a colon cancer diagnosis. I also compared my bad days with my pouch to my bad days with UC and realized I made the right decision. Things start off rough but get better with time its just tough to train your brain to get used to a new normal after how ever many years you've had on this earth. So I would ride out the medicine train until it seems like youre heading off the track and then make your decision. Good Luck I hope that helped.

Thank you all so much for your input. I can see that I need to do a lot of research so I fully understand what this surgery and life with a j pouch is all about.

I have been told my gastroenterologist is very good, but we do not get along too well, and it is hard to get information from him.

The new doctor I plan to see in about 6 weeks is the best colo rectal surgeon in the city and I understand he also treats UC medically. Hopefully he can provide me some more insight on when is the best time for surgery.

I live in pittsburgh and am very familiar with some of the gi docs and colorectal surgeons here. Best in the burgh? How were they rated,by editors of a local magazine? You might want to speak to some of their current or past patients. PM me if you have questions on specific ones. Also you are only two hours from best in the country colorectal surgeons at Cleveland Clinic. Having the right doctors on board is key to your success.

Also gi docs generally will keep you on a plan to avoid surgery. Colorectal surgeons will tell you to have surgery. Their minds are on opposing fields.

Whatever you do, NOW is the time to evaluate, when you are "healthy" enough. You do not want to end up having surgery in an emergency, for so many reasons.

If I lived In Pittsburgh and Cleveland is only a 2 hours drive I would also consider at a minimum having a consult with one of the surgeons at Cleveland Clinic. It is the best J pouch facility in the USA.

I have checked the Pgh magazine for the best docs for both colo rectal surgesons and gi docs specializing in uc for the past three years. Not too many fit that category. Cleveland Clinic is a possible option for consultation, but would probably not be feasible for surgery. I live alone and have no one who could continually take off work to get me there.

I think I might be consodered a high risk surgery patient due to obesity, COPD (previous collapsed lung after surgery).

Any suggestions for specific GI docs in the Pittsburgh, pa area in case I continue the medical route awhile longer?

Liz11, I think I sent a PM to you, did you get it?

bandit. I was being sarcastic when I said lfind surgeons by looking PGH magazine (doctors pay to get that publicity). Read my PM I just sent you.

You really really need to find real patients who were treated by a specific surgeon if you are thinking of using a local surgeon. I think its different going to Cleveland because they are a world class colorectal surgical facility.

And now that you mention you are high risk, I believe it is even more important that you find an outstanding experienced surgeon AND that you would be in a hospital where there were top notch doctors in other specialities that will work together to ensure a positive outcome for you.

I had UC and surgeries while I lived in Pittsburgh and have a highly successful pouch. I live in Arizona now, and I have yet to see a GI who knows what he/she is talking about when it comes to J-Pouches, sadly. If I had a serious issue, I would travel back to Pittsburgh to see my former GI and CR surgeon. The only problems I've had with my pouch happened when I was pregnant and my Pittsburgh GI wrote up the treatment plan for the hospital here to follow because no one knew what to do. *sigh*

I'm curious to know the names of the other's GIs and surgeons from Pittsburgh. PM me if you care to share.

As for surgery itself, my only regret is not getting the surgery sooner. 100% happy with the results. Good luck and PM me if you want the names of those I highly recommend.

It was a tough decision for my husband to make 18 years ago, but he was on steroids all the time and never in remission with the UC. His quality of life is so much better now. Of course, there have been a few drawbacks, but he is tough..and my hero.

My decision was made for me as I developed Toxic Megacolon. But, through ups and downs of j-pouch life, I have managed to go back to college, raise a family, and work like a mad woman over the last 10 years with my pouch. If you cannot leave your home and cannot live a productive life, it sounds like an easy decision to me... Just sayin'...
Becky

Hello Bandit:

This is a good news story about my experience with my new jpouch. First off, so sorry to hear of your challenges with UC, boy does it ever sound familiar though. I was diagnosed in 2010, kept getting worse no matter what drug I tried including Remicade. I ended up in emergency in June of 2012. The three months leading up to my hospital stay I was unable to leave my room let alone the house and I dropped 50 pounds. Anyway, June 2012 I ended up in hospital with a high fever and rapid heart rate, was put on 7 different IV bags ranging from steroids, antibiotics and TPN to name a few. After 14 days of colon rest and all the meds, I was still rushing to the bathroom every 15 minutes 24/7. It was then my surgeon recommended taking out my colon. Having read up online in case of this eventuality I was pretty much mentally prepared. They scheduled an emergency surgery and 48 hours later I awoke colon and UC free.

I spent from June 2012 until February 2013 with an iliostomy and while there were bumps, it was a thousand times better then UC. I started to live again. I opted to get a Jpouch thinking that in the worst case scenario I could revert to the ilostomy. I had my surgery, then a temp iliostomy until my takedown in May. The surgery's weren't a cakewalk, but neither was UC. Developed the mother of all abscesses after takedown and ended up in emergency and then two more weeks in the ward to recover. It was tough.

Fast forward to this summer, out of the hospital with my new jpouch, no meds at all and loving life. I guess I am lucky because for me the jpouch works great. While nothing is as good as the original equipment, I go days where I almost forget I was ever sick. I am back to work full time after 1.5 years off and typically go to the bathroom either zero or one time in eight hours at work. I managed to avoid the whole butt-burn thing thanks to using a hand held bidet in the hospital and a permanent one at home. I went on a few fly-in fishing trips this summer hundreds of miles from the nearest doctor with no problem other than the mosquitoes. I am only 4 months into using my new pouch but I have to say it was the best health outcome I could of ever hoped for. I wish you a speedy recovery no matter what course of action you opt for. drop me a line if you have any questions at all, I am happy to talk about it. Be well.

My last flare lasted 3 months and on steroids the whole time (I am allergic to mesalmine that is in all meds). Never got a chance to try remicade.

First time I went to the ER because of the constant pain and on the toilet constantly, the ER docs told me I was “constipated” and sent me home.

I refused to go back to the ER and stayed in bed for an entire month. After 30 days, I finally threw in the towel and asked my friend to take me back to the hospital. I was finally admitted, but not for my initial complaints, but because I developed pulmonary embolisms.

After 7 days in the hospital with no improvement, they were talking about discharging me and then surprise….I developed multiple perforations in my colon.

The colon is an amazing organ. No colonoscopy is ever going to find out how many ulcers you really have because there are too many twists and turns to see everything.

While I am still trying to work out J-Pouch kinks after 3 years, I remember how tough my life was with UC! My first thought after feeling reasonably well after my cancerous colon was removed was that an ileostomy added significantly to my quality of life. Of course, a healthy/happy J-Pouch is a wonderful advancement.

Hello:
I had UC and waited as long as possible to have the surgery. I tried everything possible to keep from having it. By the time I had the surgery, I had lost over half of my blood supply and needed a transfusion. Then take 48 pills a day and still the bleeding continued. I was in a very dangerous spot, but the surgery was the best decision I made!!! It SUCKED getting thru it, but I have had only one complication since. It is the way to go. I have been healthy ever since my doctors were amazing. Do the surgery and don't put it off.