Contemplating surgery

I had my surgery in August of last year with the reversal in October so had a bag for a very short time. I personally hated it only because I had terrible problems with me skin being irritated. Yes the bag is noticeable and depends on placement. They told me it wasn't that noticeable but I had to change the kind of clothes I wore Etc. I did find a band that helped tremendously and made me much ,ore comfortable even though I was only having it for awhile. I would strongly suggest looking that up. I have had a very rough year and am not to my "normal" at least I hope. Even though this has been a terribly long road for me I am just now able to say that I would do it again. I was pretty bad before surgery and my on,y option was getting on Humira which I refused to do. Just know that it isn't as easy as the surgical staff would lead you to believe And I loved my team but they dont tell you the bad things that could happen... Good luck in your decision making. Let me know if you have anymore specific questions, I know I didn't cover them all.

It was nearly 25 years ago for me. I was only 19, which I think played to my benefit.

Loop ileostomy in my opinion was liveable. I'd go back to an ostomy if I *had* to, but I'm glad I didn't have to. Body image at 19 is incredibly important. At 44, an "old" married woman, not as much, lol.

I had 4 months b/w my first and second surgeries. It was 1991, so no laproscopic surgery for me, it was open surgery. Surgery one was colectomy, creation of pouch, and ileostomy. Takedown was second. You WILL have mucus drainage out of the pouch (yes, your butt) between that time: it is completely normal. You might not be able to control it coming out. Do not fret. It's not indicative of pouch function. Kegel, Kegel, Kegel during this time!

At first, I'd go 12-14 times, with nighttime visits. Takedown was May; I started commuting to school for full time nursing school in September. While you may feel the need to go, it's NOT like UC urgency... You can hold it. You SHOULD try to hold it for longer periods of time, to "stretch" the pouch so it'll hold more. So deferring to go in the beginning is ok.

In all these years, I've settled on around 4-6 daytime trips, and usually zero nighttime trips (though eating late or heavy may wake me around 3am for one trip).  If I go right before bed, I'm generally pretty golden. I'd say I got to these numbers within the first 1-2 years after surgery. I rarely suffer with pouchitis.

I HAVE developed some other issues at the 22 year mark, but even had I known the possibility, I would not have changed my decision to have a pouch.

Good luck.

I'm about six weeks post-takedown, and in the last few days things have gotten really good. I was dealing with cuffitis and pain in the pouch, but now my pouch is much quieter, with no pain. I go around 6 times a day, including usually one at night. 

 

Yesterday I went back to work for the first time since February. It was great! No worries about running to the bathroom, no pain, no ill feeling. I was in a terrible flare before the surgeries for a year. I was very sick, and almost died of a pulmonary embolism caused by the UC. 

 

The surgeries are hard, there is no denying it. I was in the hospital twice as long as my surgeon expected for both surgeries. I developed a bowel obstruction after the first surgery, so I couldn't eat for the five weeks before my takedown, which my surgeon scheduled earlier because I couldn't eat and kept getting dehydrated. The bag itself was not too bad, but I wouldn't choose a permanent ileostomy. 

 

Surgery is a risk, as everyone has different outcomes. I've had complications, and it was a rough road. But I really didn't have any choice other than surgery--I had tried all the medications and nothing worked. I feel like I'm on the other side of the hill now, and I'm really pleased so far with how it's going. I'm feeling pretty great. 

 

Good luck with your decision--it's a big one. 

I would do every thing  possible NOT to have surgery. 15 years ago there were not too many options for me. Although because my disease was severe I probably would have ended up with cancer at some point.

As for bag or pouch. 

I don't know what to tell you.  First had the bad for a year cause I had complications from the surgery. The pouch did have an adjustment period. But I also had to deal with chronic pouchitis from day 1. At first meds keeped it in check. But by year 14 every thing thing stopped working and 2 months ago I was so sick that I had to have emergency surgery and now have the Ileo back. If I just left well enough alone but I hated the bag and still do. I guess the moral is how much r you willing to put up with if things don't go right. Having an Ileo is the only cure for UC. I try everyday to tell myself that but it's hard. At least for me. You might want to post this question on some of the Ostonly sites if your thinking of going that route. PS when my pouchit is was in remission it worked great! That's the sad part.

 

To answer some of your questions:

 

I had j pouch surgery 5 yrs ago. I can hold a bm for quite a long time if I have to. Example: I was at concert a couple of weeks ago and the public restrooms were positively disgusting. So held it until I got home and that was 4 hours. It was pretty uncomfortable by the end but I at least I can do it. Point is I have zero urgency. 

 

I haven't had to make any life style changes after my surgery. Things only improved. 

 

I would do this over again in a heartbeat! 

 

I have two family members with long time j pouches and they have done very well over the years so for me making the decision to go for the j pouch was pretty easy. Tough decisions we have to make. Either way.....getting a j pouch or permanent ostomy.....life is great living UC free! I'm so grateful to be rid of it and the stupid drugs. Best wishes!