From what I went through at first I definitely regretted having the surgery because my surgery didn't go as I expected it. I was supposed to have a 2 step surgery which was explained to me that the first surgery would be 4-6 hours and the second about 2 hours. My first surgery took 10 hours due to complications. Four days after I had an emergency surgery because my intestine was twisted and my whole righpaint side turned ntheon green because I was leaking bile into my body, another 2 hours in surgery and a second drain put in. I was hospitalized a couple times after due to infections.

Third surgery was to clean out my infections and to do my take down. I had 3 drains sticking out of me at one time and I'm sure you probably had to experience taking those out is some of the worst pain ever. While I was in the hospital I had such incompetent nurses that didn't know how to work my epideral machine and was shut off for a half an hour on 3 different occasion which brought back excruciating pain.I have been battling Anemia ever since.

There was a time where I just wanted to give up because I felt like I would never get better. Then I thought to myself "I made it this far and I had to get this surgery done eventually or that colon was gonna kill me so why would I give up now".

It seems like you've been through a lot but you've also had the strength to make it this far things will only get better just stay positive and know you have thousands of people on this site for support. Hang in there. There is a light at the end of this tunnel and you will reach it.

You haven't had surgery yet, right?

I absolutely have had no regrets. I was young, and the available treatments had failed me, and I had no choice but to have "some" kind of bowel surgery at the time. We didn't know much about the J pouch surgery, but it was offered to me back then, and I'm very pleased with the results. I've had many years with little problems after surgery.

Am I normal? Nope, and that's something to remember with this all... having the surgery isn't going to make you the same person you were before UC. But my "abnormalities" after colectomy and J pouch construction are just part of who I am... it's still a healthier, more "normal" alternative versus having Ulcerative Colitis, and for me, at the young age I was when surgery was necessary, it was the better psychological/physical option for me (though living with my loop ileostomy showed me I *could* be ok with a "bag.") There are a lot of people here who have issues, and there ARE possible issues post surgery, but there are a lot of people who do, for the most part, live pretty normal lives post surgery.

It truly will get better(: I was pregnant with my third baby when life took a twisted turn.. I was 7 months pregnant had to have a scope forced to take predizone asacol and medicated enemas.. It was my hell!! I was very sick and had only worried about my baby..I managed had a very scary delivery..But my daughter was healthy and beautiful.. Ironically after I had her I started to feel great and strong.. I had another scope shortly after her birth and things went from bad to worse aggressive dysphasia severe ulcerative colitis and told my colon had to go.. I was just in shock I had 2 step my babies were 6,4 & 5 months.. I had no choice and I will not kid you it was tough losing 30 pounds in a month in and out of the hospital for a month complications and many obstacles to overcome!! My mother moved in my husband was wonderful and my family gave me the strength when I had none.. 12 years of health trips Disney 3 times beaches barbecues and wonderful dates with my husband my rock<3 I have some issues now that I'm dealing with and will except as my new normal.. My fellow pouchers on this site have answered and given me more information then any doctor I have had.. I only wish I had it 12 years ago..Life does get better good luck!!!

Thank you so much for all your support. I'm losing my mind. Box of Kleenex a day!

This is just my opinion, but I think you should have the first step and then keep the ileo for a while (you can ask for an end ileo so you have better function). This will give you time to get stronger, enjoy the magical second year with your little one and regain some control over your life. Recovery from takedown can be tough and you sound like you just need a break. That's my opinion, others may disagree...only you can decide.

I had my colon removed when I was 34 and due to being so weak and sick, I kept my end ileostomy for 9 months. Honestly, I felt better than I had in years with ileostomy. If my jpouch ever fails and I have to go back, it will be fine with me.

My jpouch was formed and connected in my second surgery and I had a pretty rough recovery, but everything evened out and has been mostly good. No serious issues and weird enough, my jpouch seems to be getting better with age. It will be 10 years old in December. Good luck to you. You will feel like a new woman once you get that diseased colon taken out!

I agree with JillM... I felt soooo much better after getting my end ileo and it was easier to manage than the loop. If I weren't trying to finish everything up so I could make some life/career changes post-takedown I would have kept my end ileo longer than four months because life was so good with it. It will definitely give you relief and some time to just relax.

Wishing you the best

I was very sick before my surgeries. All you describe except the c-diff. I woke up after step one and felt literally wonderful. My head was clear, there was no more screaming pain in my gut, I knew I was finished with the incredibly painful bloody passing of stool. It wasn't just psychological. Having that diseased colon out of me made me realize how much it had been zapping my energy. So, no. I do not regret the surgery. I have had complications, but nothing was as bad as that final UC flare partly because I knew I was on the road to recovery. All in all, I lost 2 years to being sick, having surgeries and then recovering. I would do it again if I had to.

Thanks for all your support and sharing. The cdiff seems to be clearing up. Another soigmoid to go to make sure, then a blast of remicade....and hopefully build my strength, and talk to the physicians about when and where I can get this done. I am really excited and feeling hopeful since reaching out to this community. I know a jpouch is not all rainbows and sunshines...but my guts have been angry for to long. I'm ready!

I absolutely agree with the end ileostomy crowd. Have it done and start enjoying life for awhile. CeCe/CeeeCeee had her end ileo for a year before she reluctantly had j-pouch surgery and takedown. She has a very well-behaved pouch but doesn't at all regret the year she and her end ileo spent together.

kathy

I don't want to be a downer, but I regret it. I ALSO have had a lot of complications so haven't yet had a good experience with my j pouch - really hoping I will one day though. I WILL tell you though that I am thrilled to be off all medication and that an end ileostomy, as everyone has told you, really isn't that bad. A loop ileostomy is a bit of a different story but not one you have to think about for right now.

My advice is just to do as much research as you can before making this huge decision. I didn't and still struggle with a lot of 'what ifs.' Good luck to you! You have a lot on your plate right now and I wish you the very best.

quote:

Is there anyone one out there who really regrets the surgery?

Absolutely! But, they are in the minority (5-20%, depending on which study you read). But, nothing in life is guaranteed 100%. This is especially true when it comes to medicine and surgery. Basically, you just have to weigh the risks vs. the benefits. If the benefits do not outweigh the risks for you, then you are not ready for surgery. You absolutely need to be sure that this is the right path for you before you go forward. Because, if you feel that you have been coerced, then you will look at every little setback as yet another reason you made the wrong choice.

Some people have that choice taken from them because they are in such a critical state that the colon must come out or die. The only choice then is either j-pouch or ileostomy (end or continent). None of those choices is perfect or will turn back the clock to a time when you had a healthy colon. You just have to choose which risks you are willing to accept, including the risk of choosing to postpone surgery or refuse it all together.

I was one that chose to avoid surgery as long as possible. I was advised to have a colectomy due to the more than two decades since diagnosis of pancolitis and a concern for future cancer. I had decided to go ahead with it once my kids were old enough not to need their mom so much. But, that choice was taken from me by a flare that kept getting worse and worse, and eventually made me a poorer surgical risk.

Still, I look forward with no regrets. I had many complications that took me years to get over. But, by the time I had my colectomy, I wanted it done last week, not in 10 days! I literally was circling the drain, so it truly liberated me, even though I had issues later.

It is a big decision, so do not make it lightly.

Jan

Thank you! Thank you thank you! I was speaking with the general surgeon today he said, at this point I'm a good surgical candidate. Young, otherwise healthy with one nasty diseased unhealthy colon. This will be my third course of steroids since October...and who knows what that does to your body let alone remicade "blast". My mother died of cancer at 53. I have a supportive family, mother in law will be moving in next week...my work is supportive. And I WANT MY LIFE BACK. I don't want to need a chair in front of me in the bathroom to support my head with every painful bloody frequent bowel movement. I'm even thinking of not even rushing to the pouch, just give everything it's time to heal, and my family same stablility of having mom home and well. "I think I'm ready" doesn't sound ready....but it's inevitable....why not. I went home on pass yesterday, and the stress of just being home (the kids routine stuff, supper, bath, bed) was causing me pain and spent the time on the can keeled over...I can't live like this!

Sounds like you have had your "come to Jesus" moment, so to speak. If you feel like you are literally flushing your life away, you are ready. I know I was when I could not be away from my toilet for more than 30 minutes and I would look in the mirror and see a very pale impression of who I once was. My kids were 6 and 8. They were real troopers!

Jan

I am a wife whose husband went through the surgery(s) 18 years ago. He made the brave decision to go through with it because he was sicker on the steroids than the actual colitis(he never went into remission). It was awful to see him suffer. Would he have rather not have colitis and the surgeries? Sure. However, knock on wood..it got him a better quality of life(even with bouts of pouchitis and a few scary blockages).

Nice to hear from a spouse. I can't imagine what my husband is going through...two young kids, sick wife about to have her bowel cut out. He is my rock. This would be impossible without him!

I'm glad you are comfortable with your choice. My Gastro told me that I'd know when the "time" was right. I waited a year after I was only 140lbs and 50lbs below my normal weight to get back to normal to do the surgery. I've seen steroids destroy my dad and cancer was another concern of mine.

it's not all rainbows and sunshine. I had many times questioned if I had made the right choice while I was going through my two surgeries.

I am now glad I did it even though I still have some minor problems compared to others.

Good luck.

No regrets here!

Hey everyone! Just an update from Betty POOP here. End ileostomy surgery complete on June 6th, on the road to recovery! I've haven't felt this clear minded in months. Stoma bad incision a bit tender. But nothing compared to the painful bloody bowel movements. Thanks again for all you support and advice. Step 1 COMPLETE!!

Well, that didn't take long! Congratulations! Now start enjoying life with the babies and hubby!!! Please let us know how you're doing.

kathy

Good to hear..I wish you a speedy recovery!!

Good for you! Now you can have a fun-filled summer! Let me know if you want tips on managing the ileo with swimming and summer activities!

Yeah, I regret the surgery. Being held hostage by a JPouch was something I wouldn't wish on anyone. I'm still being punished for the Jpouch surgery, and can't get out of the situation i'm in. Make sure you have a kind surgeon who will get you out of pain when you need it. Or hell will take on a new meaning for you...

At least you get to experience a bit of life again with the end ileo at the moment. Gratz on that working well for you.

Hi,

I have been following this discussion for a few days now, and I jsut wanted to add my experience.

I am probably one of the earliest jpouch members to have the surgery. I had it at age 17 in January 1984.

At the time, I had the symptoms of ulcerative colitis. I was losing blod with every bowel movement, but I did not have fever (never throughout), nor did I have any other symptoms (other than blod loss) when surgery was recommended.

There were not many treatment options at this time, and I has to have 20mg of prednisone / day, along with a sulpher pill.

About a year prior, I was in very bad shae, severe anemia, weight loss, and so forth. I was deteriorating quickly, and it was at that time my parents changed doctors. What a difference that made. The pediatric GI change the medication I was on and within 3 months, I went into remission for 4 weeks. I also go stronger and stopped being anemic. The only symptom I had was inflammation and bllod loss. Everytime I tried reducing the amount of prednisone, I would loose more blod.

In 1983, the GI started talking about surgery. There was a new doctor in town, who had practiced at the Mayo clinic, and he would work with the Colorectal pediatric surgeon to do a takedown (j-pouch) and reconnect me 4-5 months later.

Due to the risk of cancer, improved quality of life, surgery was booked.

At 17, I did not totally realize what I would go through. It was very new procedure in 1984, and I think I was the third patient at the local Children's (Ste. Justine) hospital.

I was in surgery for 12 hours.

I woke up with a huge scar from my chest to bottom of stomach.

I also had a bag (ileostomy).

Believe me, at 17, I did not understand nor realize what this surgery would do to me.

I had to watch diet; I could not go swimming. I did not want to take my shirt off in public.

Worse, ostomy was not properly positioned so my bag would constantly unhook.

My skin was irritated for the entire time I wore the bag until my second surgery May 1984.

Once reconnected, I did have periods of incontenance. I never knew if I would wake up to an accident.

Eventually I would stabilize and I was able to adapt to lfe with a jpouch.

As I continued to live with my jpouch, I went through a period where life was as normal as can be.

I then hit a point (20-25 years after surgery) where I could no longer tolerate certain foods (nuts) and incidences of pouchitis happened more often.

I also had trouble with continuous cases of butt burn (again diet related) and problems with BM's (constipation).

At this time (approximately 2009) my surgeon said that my pouch was not created properly and there were "canals" which made no sense to him.

I ended up have several tests, and I was seen by 6 different surgeons.

All had come up with the same conclusion. The anatomy of my pouch was not good and did not resemble the standard shape a j-pouch should. One surgeon even went as far as to say that my original surgery was not done correctly (even though the post surgical report listed everything that was done and it did appear a j-pouch was made as I ordered the documents and read the post surgical report).

The conclusion? Because I was relatively young (45), that I should have jpouch reconstruction surgery and not live with a bag for the rest of my life.

The result? I had an end loop ileostomy done (finally) April 23 , 2013. After the surgery was completed, my surgeon told me that my pouch was severely distended, causing my symptoms (constipation, abdominal pain, nausea), so at least I knew I made the correct decision. now, the surgeon wants me to wait at least a year before attempting the next stage (reconnection) and ideally she wants me to learn to live with a bag (which I actually despise) and hopes that I won't want to do the next stage.

Would I do this all over again? Had I properly understood the results of having major surgery at 17, probably not, although I would have had it later on in life. Did I really have a choice? Again, probably not.

Did the surgery have an impact on my life? Yes it did - both good and bad.

I also lost a semester of schooling due to the surgery, and I was not the same at sports after having the surgery.


All I can say is living with a bag and a huge scar at 17 is definately not ideal. Being a test case / guinea pig for this surgery was probably the worst thing at this time.

Having to go through this all over again is possibly the worst outcome (outside of being sick and dieing) that could have happened.

I can say the surgery appears to be done much better today and the results are more encouraging then when I had it in 1984.

My recommendation is to be ware of everything that is to be done and try to understand how it will impact your life.

Feel free to drop me a message if you have any questions and best of luck.

Thanks,

Solomin