I have a couple questions but a little background before: I have undergone surgery to completely remove my colon and am currently with a colostomy bag. I feel awesome, a million times better and really do not mind the bag much. However, I am still considering doing the j-pouch surgery. Before I decide to fully commit to that, there are a couple questions:
A) I figure I am trading security (e.g. no pants pooping) for a little more normality and mobility - I would be able to move/run/swim around more comfortably, less of a hernia risk, I wont have a giant weak spot on my tummy, no more bellyshaving or caring about supplies all the time, and no more taking 20 minutes to chew my steak. What I worry is that I will have to deal with incontience again - e.g. if I get stuck in traffic I might have an accident. Basically, is it worth going through this operation, which is really about vanity/quality of life instead of health benefits (especially since I dont hate my ileostomy)
B) My surgeon is recommending I undergo a modified two stage j pouch surgery, where he would make the pouch and attach it in one surgery, meaning I would not wake up with a bag after one surgery (I already had the surgery to take out my colon and put in an end ileostomy). Apparently this is a new technique that has come aboutbecause evidence suggests you do not need the healing period between the second and third surgery as would be typical in my case. I was wondering if any of you had any opinion on this type of surgery.
C) Finally, I am trying to determine when would be the best time for surgery. I have been off predinsone since the middle of May (my surgery was April 19th and I recovered very quickly). I had originally planned to do surgery in October, but am not sure whether it is necessary or even detrimental to wait that long. Any thoughts?
Again thank you for your help
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I was on high dose IV steroids, in hospital, and had my surgery while still on them. I had no issues. I had a 2 step with ileo.
I was 19 when I had it performed. I would do it again, but in the grand scheme of things, my pouch is relatively behaved. For 20+ years, even a rockstar.
My surgeon did some one steps in the 90's (after mine). He had one go particularly bad, the man even died, so he refused to ever do one steps again. I know people have them sometimes connected right away, but he had YEARS doing them, said it's not worth the risk, and I would want a two step. But that's just maybe me. But perhaps technique is different/better these days, and I'm just old school.
I was one of the first to have a procedure at Mayo Clinic in 1983 like your surgeon is proposing. Initially, I had a total colectomy with direct connection of the ilium to the anal cuff. A temporary ileostomy (which I hated with a passion) was created to allow the connection to heal. The intent was to have expansion just above the connection occur, thus forming a pouch. This expansion did not occur to an extent needed to reduce stooling frequency to an acceptable level, so I returned to Mayo to get a j pouch. My surgeon did this in one step which avoided having the bag again and I did not have any complications from this surgery. I still had a higher than normal frequency, butt burn and occasional accidents on the road, but I was able to adapt and participate in activities I enjoy like alpine skiing in the Rockies and equestrian competitions.
If I were in your position, I would definitely go for the j pouch since it does have a high success rate. Like any major surgery, there is a possibility it will not work out to your satisfaction and you may have to have additional surgery. Before having this surgery, I would make sure that your surgeon has done many of these procedures and has had good results. Best of luck with whatever you decide to do.
I had a proctocolectomy with end ostomy and six months later had my j-pouch created and hooked up at once. I've had great success, no issues. My pouch is a rock star and holding it is never a problem. No urgency at all.
If your surgeon is comfortable with it, I would say go for it! Good luck.
Melissa
I also did two step. I knew going in with the first surgery, that once I had the Jpouch - if it didnt work then I would be on the bag for life. I actually delayed it as I was so freaked out about the bag until I was so sick I didnt really have a choice. Once I got used to the bag (I use that term lightly) I was more confident going into the 2nd surgery as I knew if it didnt work, I could handle the bag. Luckily my last surgery was a great success and my Jpouch has given me my life back. Ive had 0 accidents. Ive even tested how long I could go without actually going - and its amazing how long I can hold it. Its NOT comfortable dont get me wrong, but as I was having accidents daily leading up to my surgeries , its nice to know I can be stuck in traffic etc and not have a problem. Good luck whatever you decide.
I had the 2 step at the Mayo clinic in Rochester in october 2000 and march 2001. Since the j-pouch was fully functioning (this took a while) my control is great and the frequency is down to about 5 times a day and once a night. I never have accidents during the day and if neccesary I can go without a toilet for up to 7 hours. I found the j-pouch kept improving for about two years. I've had pouchitis once. It's been 15 years now and I only wish I had had the surgery earlier (I was 39 when I had the first surgery).
I was scheduled for the second of a three stage j-pouch surgery, wheeled into the OR when the surgeon informed me he would do the pouch construction and connection in one step, thus performing a two stage process. This would be done, he said, dependent on what internal conditions he found. Apparently things were OK inside as he completed everything at that time.
This was at Cleveland Clinic in year 2000. Everything fine ever since.
Thanks for all your advice guys, really appreciate it. I decided to go ahead with the modified two step procedure.
I have a follow up question though: I developed a small hernia below and to my left of the stoma (probably got too cocky at the gym). Will having a hernia affect whether I can do the two step - Ie the hernia won't damage the intestine or something such that my doctor would decide to do the three stage?
The other question I have is are there any strength exercises I can do with a hernia?
I've had a few ( 5 or 6 to date)...
Usually they can repair them during surgery either sutured or with a mesh patch...shouldn't cause a problem unless there is a major tear.
I made a huge mistake post pouch surgery ( I never learn) and started doing stair master 6 weeks post op...ripped my pouch to hell...
2 years later had yet another redo and waited 8 weeks and ripped things again...(told you I never learn)
So after the next repair I waited 9 months then did some serious aquagym...yup, you guessed it...ripped it all to pieces (I still haven't learned)
So, be kind to your body and yourself...this is not a short term game but a long run lifestyle...
Sharon
my Dr told me to listen to my body but to wait 6 months for strenuous activity
I ran down a hill 3 months afterward and was fine... until I realized I had to get back up! Not so fun
You will find that sometimes you can do a lot of things and then that makes you think that you are to being superman...until you hurt yourself and realise that you are still healing...so even if...you think that it is fine, if you think that your are stronger than ever, if you think that you are bullet proof, you are not...you are still healing and that has its own timeline and does not send text messages to tell you when it is over...
Sharon
Hmmm, it sounds like you have decided to get the pouch, and I am so glad that you feel better after your first surgery! That is awesome.
I was young and my parents and doctors sort of decided for me, but now I would say, I do really appreciate my j-pouch AND that they did not have the slightest clue about how the healing and adjustment process would go for me. I would say it took 10 years, easily. I never had accidents with my UC except for the times that I passed out from dehydration. Now I have had my pouch for 22 years and feel like I have a decent grip on how to take care of it.
My accidents, when they occurred, happened when I had pouchitis, or when I ate something that didn't agree with me (there are many things, so it took me a while to figure out what really worked for me - my doctors had no idea). Also, accidents always happened when I was sleeping deeply.
If they were able to leave your sphincter muscle intact, you will have a fair amount of control, though, obviously different then before. Your healing might be much faster then mine was (depending on so many factors) but I would just say give it time, maybe a long time, and you will learn what works.
Wishing you absolutely the best of luck!