J-Pouch/takedown questions

I just recently had J Pouch surgery on October 14th. I had the two step process which includes the creation of the J Pouch and the loop Ileostomy during step one and step two will be the takedown 3-4 months later generally. The 3 step involves the removal of the colon and an end Ileostomy during step one, the J Pouch creation during step two and the takedown during step 3.

You don't need to get a J Pouch, that is something you can discuss with the surgeon. There are positives and negatives with both the J Pouch or choosing to have a permanent end Ileostomy.

All drugs failed for me and my quality of life was terrible. I had UC for 15 years and surgery gave me my life back. That was solely what made the decision for me. I couldn't stand being trapped at home and no meds to help me.

There's only two outcomes to surgery: j-pouch or a permanent ileostomy. A j-pouch can be created in 2 or 3 steps. 'Takedown' refers to the reversal of the stoma - it's the final step in j-pouch surgery.

If you are young and healthy going into surgery, you are more likely to have a 2-step procedure. If you are on steroids, underweight, not so healthy, etc., you will probably have a 3-step procedure.

There are two types of ileostomies: loop and end. A loop is always temporary, whereas an end is often (but not always) permanent. The names refer to the differences in anatomical structure: a loop is connected (in this case to the new j-pouch) whereas an end 'ends' at the stomach. It's hard to explain in words: google images will show you exactly what it looks like. Anyway, the upshot is that loops have two openings (one for output, another for mucus) and are considered far harder to manage than ends.

If, on the other hand, you decide to go for a permanent ileostomy, it'll just be the one procedure - colectomy and the creation of an end ileostomy. Some surgeons choose to leave the rectum behind. I personally would ask to have it removed, as leaving it in just usually results in problems. When literally everything is removed - colon and rectum - that's known as a proctocolectomy.

Most people go for a j-pouch, 'cos it's an internal pouch and you don't have to worry about having a stoma or ordering supplies. As you're only 18 ask the surgeon about infertility risks in having a j-pouch vs. having a permanent ileo. I don't know what they are offhand.

Which is better is an impossible question to answer, because outcomes are so unpredictable. It also depends on how the person is able to psychologically adapt to having a stoma vs. having an internal pouch. Some people never really accept having a stoma, while others take to it like a duck to water, so to speak.

There is humira,stelera. I would try everything out there before surgery. Words of wisdom.

I recently completed the 3 step. It seems like 3 step is more rare. I'd say 1 in 10 people has a 3 step from what i see here. I definitely think 2 step is preferable. I ended up with a 3 step because of long time steroid use and general health.

Although 3 step took longer, I am thankful I did it this way. It was nice to see what life with like with the end ileostomy. For me, the ostomy bag was a very scary proposition and I think as a person with bowel disease, it is a reality that we could face, even if everything is great for 10 or 20 years, it could happen that I need to go back to the ileo so having one that was easy and manageable showed me that living with it isn't the end of the world, in fact, it's not really a problem at all once you figure it out.

The first step for me was the hardest. I think because my general health was poor at the time. They removed my colon and I had a end ileo. My surgery was laproscopic and the incisions never really concerned me as much as I thought they would. I have the bikini line incision and the stoma. There was also a little stitch in my belly button but it's not visible at all now. Seeing the stoma for the first time is weird. Mine was cute and short, almost text book perfect so far as what you would see in a book. The problem with that stoma is that it's actually a little bit short. I ended up using convex supplies and everything was great. My life was no altered by the bag, I went out, worked, hiked... I got 7 days wear time so supplies weren't a huge concern. A little lasted a long time. I was out of the hospital in 5 days with the first step. Could have probably pushed to get out after 3 or 4 if I wanted. I had to wait 12 weeks for step 2.

Step 2 was the jpouch creation. They went through the same incision. This time I was able to get out of the hospital in 3 days :) I had two drains, one on either side of my pelvic area, below the bikini incision. I also had a new stoma. Same spot but it looked a little different, almost like a dome. This stoma was really difficult. I couldn't get good wear time with any of the supplies. I changed nearly every single day. This is why I say, having the 3 step is interesting because you experience the end ileo after step one which is a huge contrast from the loop ileo after step two. My loop left me very dehydrated because it is higher in the small intestine. The food moves so fast through it. My BP was very low the whole time. It's almost not a livable situation - mine wasn't at least. At least it is only 8 weeks until takedown.

Step 3 is the reversal. This is the shortest operation. Mine lasted about 1 to 1.5 hours. I was out of the hospital on day 2 I believe. There is no incision and they sort of close up the stoma. Mine was left open and packed. Since step 3, last week, things are progressing along. It's unpredictable but not like having UC. I can hold it and I am not in any pain. The problem I have right now is that i am going quite often and my butt burns. I also get up in the night a lot. All of this is to be expected for the first few weeks. They say it is an adjustment and it takes time to get to your "new normal".

I am extremely happy I had surgery. I haven't taken UC drugs since my first step. I feel liberated from all those medications and I am hopeful about a future without IBD. I am a worrier and having UC always worried me, I couldn't travel or make plans. I was just too scared about my colon and whether I would be in any condition for a car ride. It was making my life a living hell. Even in remission, I worried about when it would end, what if I lost my job and couldn't afford the medications... I feel better knowing that is in the past.

Agree with ks, nssg and SLF. I had my second (of two) j-pouch surgeries less than a week ago and like SLF, wish I had done it sooner. I wasted my 20's trying and failing too many medications and living a poor quality of life in order to hang on to my diseased colon. The surgeries are difficult, but in my opinion they are totally worth it. At this point, I am taking no medications, I am healthier than I have been in years, and I've been spending less time in the restroom than ever - averaging five non-urgent bowel movements a day. I actually use the restroom more to pee than to have a BM. Good luck with your research and your decision.