Gosh ... I am new to this group. Loved your “post!” I have had my J-pouch for 30 years. I am having more problems these days. Bummer. But you have given me hope! How did you know it “was time?” My husband and I are thinking of doing a pretty big trip next October. ( It will be our 50th wedding anniversary.) I am not sure what to do...I would REALLY like to hold off until after our trip! But do I want to be out in the middle of nowhere and have issues? Thank you for listening! I hope you are feeling stronger everyday! And,  I am thinking about you!




Its great to hear your progress is going good.  I am sure it is alot to deal with and not fast recovery.  I have a J pouch for 5 years and already my surgeon and GI dr r suggesting revision or removal.  I am going to have hernia fixed and he said I should think about then while he is opening me up.  I just don't know.  How many times would change bag and would it be the same amount of time as normal way.  I had trouble with stoma, alway sore and so much output.  Maybe that was because of the transition.  Not sure but they said my entire colon was diseased and have to remove all except a small end and that is what gives me all my pain, burning, bathroom time.  I feel my life is the bathroom.  When u dream about  finding where the bathroom is it is starting to be a nightmare.  

I do rejoice when I have good days and take advantage of the time.  But I think I have more bad than good and just can't live life. I have a window of time I know I need to be near a bathroom and want to be at home.  I can't take vacations or any overnight trip.  I always  watch what I eat and depending I get so much gas I don't even want to be around people.  So much for relationships.   

Great to hear your update N/A. Good to hear your feeling stronger. My decision point is looming again and I have my surgeon appointment lined up in late Jan - so in that intense mode again of wondering whether I can face it. Still erring towards doing it. Feel like I need to read over every post about pouch removal and any literature I can find again... but know nothing will give me the certainty I am seeking! 


Nice to hear you are doing better!  I agree with you about the mental side of having a new stoma. I've had to work on that part. I invested in ostomy underwear, invested as it's expensive, and it helps a lot. Prior to that I bought bag covers but the underwear is better. It keeps material in-between the bag and skin. 

EVERYONE contemplating removal there are other threads in here where we have discussed our decision process and surgery outcomes. Also if you have any questions please ask. Removal surgery is major.  Nothing is too small to ask about. Sometimes its the little things that hold us back. 


Thanks AIMC.  And you're so right about asking questions.  There are no questions too small to feel embarrassed to ask about if it's something that is causing one any doubt or concern.  

Burd, welcome to the group!  I hope you and your doctors can come up with a good plan and date if you go for removal.  There really wasn't one thing that pushed me to pull the trigger on removal, I'd had problems with the pouch almost from the get-go, even though I had good periods of time with it as well.  Eventually, too many fistulas, abscesses, EUAs, cuffitis, drainage/leakage, etc.  My surgeon finally said about a year ago that the pouch "had to go" due to the latest abscess being so huge with a fistula that wrapped around the pouch.

TF, I'm sorry you're having these problems.  I would point out that if you suffered with your ostomy due to it being a loop ostomy, the end ostomy, which is given when a pouch removed, is easier to care for.  I certainly wouldn't try to influence anyone as to whether to keep or remove a pouch, but I personally wish I had had it taken care of sooner.  An ileostomy is by no means easy to get used to, it does take time to come to terms with it, but in my case, it's been great compared to all the issues I had with the pouch.  

And for sure, TE Marie, there is a lot of information out here from others who have gone through this process - I scoured it all before and after my surgery, and got so much helpful information from you all.  Your posts were especially helpful, TEM.  PS the ostomy wraps are great, too!

I do have a few suggestions for those who eventually do decide to do a removal.  Talk extensively with your surgeon on what to expect, both in the hospital and afterwards.  Since we are all so different, it's not easy for the docs to tell us specifically what will happen, but they can give you an idea of what to expect, and when to contact them.  Things happened at home that I didn't expect, didn't know if they were normal, didn't know if they'd lead to something worse, etc., and that was really difficult to deal with.    2)  try to build yourself up before the surgery - walk, do some aerobic exercise, up your protein, etc.  3)  and  your doc and/or do some research on Juven - it's a "therapeutic nutrition powder for wound healing", which I learned about and used after my incision opened up.  It's available on-line or at Walgreens.   This stuff works!   Also be prepared to up your protein intake after surgery, I try to increase my protein with meals, and supplement with a protein drink during the day;  4)  ask about how your bottom will be closed up - stitches inside?  An opening for drainage?   I had these and it was fairly "comfortable".  I understand some have staples?  Can't imagine that ...  5)  Have support available to you as needed.   It's difficult, and not advised, to be bending over for the first few weeks for even simple things like pulling on socks.  6)  And always remember this:

Recovery — Expectations vs. Reality | Out of the Cocoon


N/A Your “post” was so awesome! Thank you! My husband and I just booked a cruise for November...to celebrate our 50th wedding anniversary. I am REALLY hoping I can hold out until after our trip! But pretty concerned about doing walking tours, etc. Perhaps I will be on Cipro, to help? I’ll be in touch later. Thank you, everyone for just ALL the great tips and support! 

N/A - love your visual aid, explains a lot of things perfectly!

BURD - I hope you make that cruise and you are right definitely to take any medications you think you might need and antibiotics can help with other problems that might pop up.  We just celebrated our 43rd anniversary and are finally planning the trip I've been waiting to go on for 13 years.  I got too sick with my UC and so on.  As far as walking I suggest you take taxis/uber whenever possible.  Don't know how that works with cruises... just know that's what we are going to have to do because of my peripheral neuropathy.   

Hi N/a, thanks for the referral to this site. I’ve been a member of jpouch.org but  I just never thought of searching removal.

I’m  65 and I’m forming a lot of scar tissue which has caused blockages for me. I have scar tissue at the rectal area too which makes emptying my j pouch difficult sometimes. All in all, I’m actually feeling fairly good since being on Entivio but I still have some ulcers in the pouch. That’s what makes this decision very difficult. It isn’t difficult in the middle of an obstruction tho!

I’m thankful to read all your stories. I guess it’s better to research this thoroughly but I’m tired of hearing only the nightmares on Facebook. It definitely helps to hear some good stories as well.


I know what you mean about facebook. Whatever you decide please ask you surgeon if s/he will work on your ahesions while operating. My surgeon has spend more time dealing with my scarring/adhesions during surgeries than the main surgical goal. She's operated on me 3 times and each time I end up feeling better. At one time I was taking 4 10mg hydrocodone pills daily. I was able to taper down so that I no longer need them at all. Obstructions are hell!

Let us know if you have any questions 😎

Hi Lori, good luck with your surgery.  I think if you go through a lot of the posts here of folks who've had the removal surgery, you'll find that there are very few (if any?) regrets.  I've been doing quite well, back to doing everything I did before.  I'm still pretty careful with what I eat, and chew very well, but have not had any obstructions since removal - yay and knock-on-wood.  We're all here for you to answer any questions and give you our support.

TE, I'm so glad to hear you're feeling better and are off pain meds!


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