I'm scheduled for surgery on November 5th..no longer on steroids and have been able to gain a little weight back since my hospitalization in August. I went in to my consultation with the surgeon thinking I would for sure be able to do the surgery in 2 steps but she strongly urged me to consider 3. Her reasoning was that the time between step 1 and 2 in in a 3 stage surgery allows the inflammation in the rectal area to go down which makes it easier to stitch the j-pouch into the cuff and thus results in easier healing and less chance of a leak. Also my albumin levels have been low which she said is in indication of how well/not well my wounds would heal. I trust her and see her points...but am really wanting to only have two surgeries. I'm just wondering if anyone can provide some insight as to why they may have had 2 or 3 surgeries (non-emergent situations since it's pretty much always a 3 stage surgery is you are hospitalized at the time of step 1).
Hi Emile, I tried for a two-step surgery. After takedown I developed a leak and peritonitis. The pain from the peritonitis was incredible, I still get the horrors when I recall it. I had to have an urgent surgery to clean up my abdomen and put in a new ileostomy. Then I spent an extra week in the hospital recovering. I finally completed takedown a couple of months later with a fourth surgery.
I was not on prednisone or a biologic at surgery, and was relatively healthy (for a colitis patient). My surgeon did say that about 7% of patients would get a leak, so I guess I was unlucky. In my case three surgeries would have been better, but there was no way to predict that going in, as I was a 'good' candidate for a 2-step procedure.
Well, I had a 1-step procedure. It was challenging, and I was in the hospital for a very long 10 days, but I’m glad I got it over with. An important factor was that I was a plane ride away from my surgeon, and I really didn’t want to go through that any more times than necessary. I might feel differently if it had turned out poorly, of course.
As much as I hate to say it your doctor probably knows best, having the three stage may be a safer bet than trying for the two stage and ending up with more surgery due to complications.
I had a two stage only because I was able to get healthy enough, otherwise I would have ended up with a three stage as well.
What kind of condition are you in now?
I had a three step surgery. I'd just had a baby about six weeks before my first surgery, so that might have had something to do with it. I remember feeling so good after the first surgery, being in a lot of pain for about a week after the second, and trying to adjust to my new pouch after the third, which was not what I expected. (That was with four little ones around, so the details are a bit fuzzy.)
I do agree with your doctor, that letting the inflammation heal between surgeries would be a good idea, but you know you body best. If you are healthy enough for a two-step, then do it. But either way you're going to be doing what's best for you at whatever stage you're in. Thankfully, there is no contest between what's the best for everyone: one step, two step, or three.
Thanks for your replies. I'm in "ok" condition. I was hospitalized in August so I'm better than I was then...still going about 10 times/day with pretty bad pain when going to the bathroom. I'm definitely tired and fairly weak-although I have managed to gain a little weight back since August. So like I said...."ok". I just really don't look forward to three separate surgeries. But I don't want to end up with complications and have my body be too weak to heal itself in a timely matter.
I agree that three surgeries is a lot, but sometimes that is the best way. You are going to feel loads better after the first surgery, even though you'll have to manage the ostomy.
Dr Remzi, whose specialty is pouch redo for failed pouches, does three step for fresh new pouches when he makes them. He recommends a six month wait between the first and second in order for the mesentery to lengthen. Apparently, if the small intestine does not reach to the anus with a good margin to construct the pouch, it is major cause of complications. It can cause tension at the anal anastomosis. A 6 month wait between steps 1 and 2 allows the mesentery to lengthen. If you do two step, you cannot wait 6 months between steps 1 and 2, because they will be combined into one step. Better keep things slow and get a pouch without complications.
I had a 2 step and didn’t have any problems with leaks (and they do a pouch leak test before you can even go for step 2, which I believe is called a pouchogram). However your doctor’s reasoning sounds reasonable and wanting to err on the side of caution. The question I would ask is, if you fail a pouchogram due to a leak, you have to wait anyway before you have step 2, so wouldn’t that test pick up any leaks such as what she is concerned about? And then if so, don’t you just wait longer for step 2?
I had step 2 some 3 months to the day after step 1, after passing the pouchogram.
I had three step. I was very sick at the time. The surgeon said that was the biggest factor for me to do a three stage. I know after the first surgery, you feel so much better, it's kind of hard to wait on the other two. I trusted my surgeon, so I would do whatever he recommended. I think if your surgeon thinks you should do three, you prob. should do three. Good luck whichever way you end up going.
I had the 3 step surgery. My surgeon was very conservative for many of the reasons above. I think the numbers for a 'problem free' journey are greater with 3 stages. What ever you choose, you should be happy with the outcome. I wish I had done it years earlier. Good luck let me know if I can help with anything else.
I had 3 steps, first in 9/2018, second 12/2018 then take down 2/2019. The doctor originally said 2 steps but the 1st surgery went for 5 hours so they decided I need 3 instead of 2. I did not have choice. 1st recovery was good, second was ok 3rd was much harder and took a long time. But also because the body need to adjust to the new pouch. The first 2-3 months after take down was extremely difficult, but I finally feel like myself. If you trust your doctor, you just have to go with his recommendations
3 step 3 step 3 step!! Lol. Look here's my take. You are sick like we all are/were, and the best chance to do things properly is what you need to have. I know it sucks to have the bag, especially the loop ileostomy it can be a struggle. But all the time you can give for those areas to heal is crucial. You don't want to be in a position of dealing with unnecessary infections or other issues.
Get those albumin levels up, get your weight up, get the j pouch placed and then give it a few months to heal. Then go for takedown. Trust your doctor on this one and don't be in a rush. Time flies and though it seems like forever, that extra time in between surgeries will go by before you know it.
And follow all your post surgery instructions to the letter! Watch your fiber/bulk intake between surgeries, you don't want a small bowel obstruction. Take all your medications properly and on time. Stay away from coffee, soda, cigarettes (if you smoke), nuts/seeds, etc...
You got this and can't wait to hear from a healthy you when this is all done!
I had a 3 step surgery for two reasons: to give my body time to heal from inflammation (like you stated) and because I was not interested in being under anesthesia for a long time.
I would also recommend the 3 step surgery because with the 3 steps, you will get an end ileostomy to start with. I absolutely loved my end ostomy bc I had all of this new freedom and it’s a very easy-to-get-along-with ostomy. The 2nd ostomy (and the only ostomy you would get with a 2 step surgery) is a loop ostomy and this one is harder to heal from, has more complications, and I just overall really struggled with it. With a 2 step, you would have a loop ostomy for a couple or more months so if you struggle with it, you’ll have to struggle awhile. But if you do the 3 step, you’d have the easier (end) ostomy for the long period and you’d only have the loop ostomy for a month. This obviously a personal preference thing but I will always recommend the 3 step over 2 step.
Actually, there are two kinds of two-step surgeries, the more common where you get the j-pouch built and not connected, and have a loop ileostomy in step 1 and then takedown in step 2. The 2 step variant has an end ileostomy as the first step and then j-pouch construction + ileostomy closure as the second.
Thanks again everyone for your feedback. My albumin results came back last week slightly higher so as of now my surgeon is planning to do it in 2 steps. I hear and agree with allowing the body time to heal, how much easier an end ostomy is to deal with than the loop, and possible complications. I feel like it’s such a hard decision to make and I’m not sure 2 steps is the right one but I’m just trusting my surgeon for now, who came highly recommended, and if my symptoms worsen between now and surgery date (November 5) then I think it can fairly easily be switched back to 3 steps.