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Hello Friends,
My name is Shannon and I became an Ostomate on 12/20/13 after having Crohn's & UC for almost 8 years. I'm doing a lot of research about the J-Pouch and am curious if any of you have had success with the pouch and connection in one step.

I had my entire colon removed and a temp ileo installed but am anxious for the reversal and take down. I have reached out to a couple of members on here and so appreciate their feedback and advice.

I understand the key is healing and making sure everything is good to go so that the pouch will be successful for the future. Being a patient patient is hard for me. I never wanted this ileostomy, but grateful as I'm sure it's saved my life.

I'm down to 8mg of methylprednosine a day and last Remicaide infusion was in Oct 2013 and stopped taking Immuran in November.

Thanks in advance, I appreciate your time and feedback.
Shannon

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
I had a 1-step in 1995, but back then they weren't as careful in choosing candidates. I was not an ideal one and had some serious complications. I was on 80 mg of prednisone at the time and still in a refractory flare. Still, my j-pouch was successful, and I never had to have an ileostomy. Hopefully, I never will!

Jan Smiler
Jan Dollar
T TroyMember
I had a one step in 1999. It was successful for about 13 years, but unfortunately, the past two years came with many complications (pouchitis, cuffitis, etc). I had my pouch removed last week and now have a permanent ileo. Of course, I do not blame the one step for my issues. Like Jan said, back in the day, the screening was not what it is today.
T
mgmt10mgmt10Member
Hi again Shannon!

I think your challenge would be to find a surgeon who would go in, create the j pouch AND hook you up at the same time. I know most of them like to leave that healing period. But if you are healthy and off meds, and you find a surgeon who feels comfortable doing it....that would be great for you. You already had the colectomy and have the ileo so that cuts out time off the surgery.....less time in the OR and under anesthesia .

My first step I was in the OR for 8.5 hours. I think if I had know that I would have chickened out! My poor husband sprouted many a gray hair that day!
mgmt10
S ShannonBMember
Thank you all for your input. Marianne thanks again for the helpful info.

Jan, I'm impressed you had success with that high of a dose on Prednosine. Steroids are the worst! They can really help you but the side effects are horrible (I have cataracts and osteopenia at 39 ys old).

CJB, I'm grateful to hear of your one step experience, that's awesome.

Troy, I hope you are feeling well and recovering. I'm sorry that you had problems with your pouch over the past couple years.

I'm so thankful for this site and people's willingness to share their stories, it definitely makes me know I'm not alone.
S
Scott FScott FMember
My one-step went without complications, even though I was on plenty of prednisone at the time. I was asleep at the time, but I'm told the procedure went quite quickly - less than an hour, if I recall correctly, which seems crazy. The recovery from a one-step is harder, even if there aren't any complications. My surgeon told that total hospital days were about the same for one-step and two-step procedures. Since I never had an ileostomy I guess nothing can happen at my (nonexistent) old stoma site.
Scott F
Last edited by Scott F
MM Michael MurfittMember
I had 1 step surgery for my pouch, I was in theatre for 6 hours. My surgeon said that because my surgery was because I have FAP and had not been on any medication he was anticipating doing a 1 step, they can't always tell until they open you up as to whether it'll be a 1 step or 2/3 step. I was in hospital for nearly 2 weeks and had six weeks convalescing at home, that was nearly 9 years ago now and no complications.
MM
Scott FScott FMember
Marianne, I checked with my brother about the procedure time. He thought it really might have been an hour "skin to skin," and he was awake at the time. He's quite certain it was no more than two hours. It's hard to gauge from outside the OR, since there's extra time for getting an epidural set up, draping, etc.

I think I did have a super hero surgeon.
Scott F
D dawn58Member
Shannon,

If you already had your colon removed, you can't have a 1 stage surgery. You already had one. You can have stages 2 and 3 together, which is preferred over having 1 and 2 together. You now have your diseased colon removed so you should be healthier going into the next surgery. The problem I see is that you are still on steroids. I had stages 1 and 2 together and it was a big mistake. Don't rush it. Don't believe any surgeon in Cleveland would do it together, it's not worth it.
D
J JaypeaMember
I had my ileostomy and colectomy in May of 2012. My j-pouch formation and take down of my ostomy happened all in one step in Nov of 2013. My surgeon said that he would not know if he could do the second surgery all in one step or if I would be left with a temporary ostomy until he had me opened up on the table.
He managed to do it all and I am VERY pleased with the results. It took 10 days before my bowel woke up so had some immediate post-op complications but now I am going back to work, participating in physical activity and doing the happy dance that everything is behaving as it should.
J
P Pouch4WfMember
So the reason for the temp ileostomy is to allow the pouch to rest and heal without stool passing through. There is increased risk of very dangerous complications including abcess and pouch failure if temp ileo is not used.

However, there is a flip side. Temp ileostomy do have some small risks themselves. So it is a balance act.

Other things that are considered....

Steriods or immunosuppressants: these delay healing and if used before surgery will often be a reason for temp ileo creation.

Obesity: from what I remember, it can be difficult to create an ileostomy on obese patients. This can be a reason for a 1-step surgery...could be wrong on this one :-).

Dan
P

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