J-Pouch Surgery or End Ileostomy?

I have had severe pancolitis for six years now. Since my diagnosis, it has been a living nightmare for me. I was diagnosed when I was 19 and am about to be 25. I have done a few biologics in the past to keep my UC symptoms from flaring. I have done Remicade with Imuran as well as Entivyo. Both of which I have failed on. After failing on Entivyo, I had to have emergency surgery at U of M hospital in September 2020. I had a partial colectomy done and have had an end ileostomy since. I was told that my bleeding from my rectum should stop after about two weeks after my surgery. However, I'm currently still having bleeding, flares, and severe pain in my rectum. Nothing seems to help. I have been doing steroid and mesalamine enemas as well as taking Prednisone. My C-reactive protein level is at a 35 which is incredibly high; considering normal is about a 5. My GI at U of M did a sigmoidoscopy about a month ago and I was told that I may have chrons disease. I was told I only had two options. My options were to have a permanent end ileostomy or go back on biologics (Stelara) and Prednisone in order to calm the rectum down, but my GI doctor feels I may never be a candidate for J-Pouch surgery if it is chrons. He is worried about all of the possible complications and the strong possibility of the J-Pouch failing.

I was then referred to the Cleveland Clinic in order to get a second opinion.

After meeting with a GI doctor last Friday at the Cleveland Clinic, he told me he feels I have diversion colitis and that I am totally a candidate for J-Pouch surgery. However, I need to do it right now. I am going back to the Cleveland Clinic in April to meet with one of the surgeons to discuss J-Pouch surgery. I am really conflicted as to what to do moving forward because I don't know which procedure will give me the best quality of life and I can't keep living like this. I am not sure whether I should go forward with the J-Pouch surgery or keep my end Ileostomy and have the rest of my colon removed. I would greatly appreciate some input from others who have had J-Pouch surgery or still have an ostomy in order to help me make a better, more informed decision.

Thank you so much!

Hi there!

I am so happy to hear you've found some sense of normalcy with your J-Pouch!!

When I had my sigmoidoscopy on the 6th of March, my GI at U of M saw signs of cobblestoning in my sigmoid colon (which is often a sign of chrons). He also said that after a partial colectomy, it is highly unlikely that my colitis would still be flaring as bad as it was. I was having about 4-5 colitis attacks daily with severe pain. He took pictures during the procedure and explained where the cobblestoning was. He also told me that 50-75% of my rectum is ruined because of the constant rehashing of the rectal tissue due to the attacks. During the procedure, he took biopsies and sent them off to pathology. When I received the pathology report last week, there was nothing in it that indicated one disease or the other, chrons or colitis. I am meeting with him on the 9th of April and plan on asking him which disease he feels it is.

Due to the constant battle I've fought with my colitis for the last six years, both my GI and Colorectal Surgeon at U of M have tried to push me towards having a permanent ileostomy numerous times. They both worry about the complications I could have if I tried to progress forward with J-Pouch surgery. I was told that if I followed through with a J-Pouch, I may have to be on biologics the rest of my life, have problems with fertility, and develop fistulas. Not wanting to deal with all the possible complications of a J-Pouch, I had pretty much decided on having a permanent ileostomy; even though I definitely did and still do not wish to have an ostomy bag the rest of my life unless it's 100% needed. My GI told me that we could try to save my rectum by doing Stelara and enemas in order to do a J-Pouch; but he also warned me that I was at a high risk for pouch failure and needing an ostomy bag anyways. However, both my GI and Colorectal Surgeon wanted me to get a second opinion at the Cleveland Clinic in Ohio before moving forward.

When I went to Cleveland Clinic last Friday, the GI I spoke with told me that I didn't have chrons but diversion colitis. I had the same question as you! How can you know if it's diversion colitis or chrons without doing a scope and taking biopsies? Didn't make much sense to me! The GI at Cleveland Clinic didn't seem the least bit bothered by the sigmoidoscopy pictures I provided from the 6th or the fact that I was still having attacks with blood loss. He shared with me that I had a 95% chance of the J-Pouch working for the rest of my life, I would never need to take another biologic again, and would have no issues with fistulas or fertility. He mentioned wanting to have it done now due to the fact that I've been suffering and having attacks for so long. He's worried that the tissues in my rectum (if I keep going on the way I have been since September) will not be be able to handle the J-Pouch procedure. I am meeting with Cleveland Clinic Surgeons on the 12th of April. I am hopeful that they will be able to give me a better gauge as to whether I'm a candidate for the J-Pouch surgery or not. At the end of the day, they're the ones who get to make the final call.

I'm just getting two very drastically different answers from two different doctors. I was basically dead set on having a permanent ostomy before going to Cleveland Clinic and now I'm finding myself second guessing my decision. It's not that I hate the ostomy, but since my partial colectomy was an emergency surgery, I didn't have time to even comprehend it all. I've also been sick the entire time I've had the ostomy, so I never got a sense of relief. I definitely do not prefer to have an ostomy unless it is truly needed.

I am currently doing mesalamine enemas but that is the only colitis medication I am on currently. I was doing hydrocortisone enemas, however, they caused some really severe side effects and my U of M GI decided to take me off of those. My U of M GI suggested going on Stelara, but when I mentioned it to the GI at the Cleveland Clinic, he questioned the Stelara. He felt that going on Stelara wouldn't be a good idea at this time and I should just push to get the J-Pouch done. If I do the J-Pouch procedure, I would definitely have a loop Ileostomy for about 3 months.

I'm just having a hard time making a decision on the J-Pouch procedure and a permanent ileostomy because I'm getting two very different opinions. I have never had to make a decision like this before and it has been weighing very heavy on my mind over the last month.

Hello,

I am very familiar with the doctors and facilities you have gone to.

I elected 8 weeks ago to have the total procto colectomy and jpouch placed due to my very advanced UC and very high cancer risk

I wound up with a temp loop osteomy and hope to be reconnected in the next 30 days.

My thought and this is my personal thinking; I have always and still believe in avoiding an ileostomy. I did not have a choice because during surgery my scarring and inflammation of the rectum and sygmoid were so significant that a diversion had to be created.

My understanding is that jpouch is contraindicated with crohns, but only the doctors can tell you if it is feasible and what the benefit/risk situation is.

I will tell that one surgeon at Cleveland clinic who I interviewed insisted i get a mri of small bowel to rule out Crohn’s disease if I was going to use him. I did not get the mri and did not use him.

It’s a tough call that only you can make in conjunction with your care team, but I would never agree to a permanent end ileostomy without exhausting every possibility.

That’s my my thinking and two cents worth.

Post Edited (New577) : 4/4/2021 6:14:41 PM (GMT-6)