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7 replies

jpouch to permanent ostomy--HELP!

Akk3769Akk3769Member
So to begin with I am going through A LOT in my life right now including divorce, financial problems, and dealing with being a full time student while working. My pouch isn't helping!

WELL...I had my pouch surgery about 2 years ago and have had problems with pouchitis and cuffitis ever since then! I've tried everything probiotics, antibiotics, Canasa, rectal foam, diet change, and steroids. Nothing gave me permanent relief so I've come to the tough decision of having a permanent ostomy.

This is hard for me because I am 27 and I didn't feel sexy or pretty with the temporary ostomy. I went to see my surgeon at the CC and we scheduled my surgery for May 7th! He said that it is not common for someone to go from a pouch to a permanent ostomy because of problems but I am just sick of suffering. My previous surgeries were all laproscopic but this he has to do a midline incision. Maybe this is the reason why I am freaking out but I have been having panic attacks ever since I left his office. I worry about the pain, and recovery, and wondering how much better my life will be with a permanent ostomy! Ahh it's a HUGE life change and I hope that someone out there has gone through this and can offer any advice for me or share their story!!! Smiler
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P PoucherInTOMember
Awww, I can SO relate to what you are going through.

I'm 34 and had my jpouch removed for a perm ileo 6 months ago. To start, it is great that your surgeon is at CC - they will take great care of you there and you can rest assured that you will be in very able hands.

I also had a midline incision, all my previous surgeries were midline, and while it did take a long time for my incision to heal, things are great for me now. I have ZERO regrets. A poorly functioning jpouch is miserable to live with, and in just a few months you will feel like a new person! Life is yours to grab!

The pain will definitely be tough, so make sure you have a solid plan for pain management post op. Walking after surgery is a must, it gets those bowels going.

Are you having your butt sewn up as well?

PM me anytime if you have other questions Smiler
PouchomarxPouchomarxMember
i have had my jpouch for 5 years and just went back to temp ileo due to leaks and infection in spine from them. its been 2 months and hate this darn bag with a passion. i feel disgusting and wonder what woman would want to be with me having this. I too am divorced since last year and its not easy. i was given the option of having a redo,perm ostomy, or now option of a k-pouch. I am just starting to look into this..seems like a better option than this crap bag. i have a few months to figure it out before i meet with Shen and my surgeon again to come up with my plan. who was your surgeon at Clinic? Mine was Dr. Kalady
J jeaneMember
Akk,
I'm sorry you are going through this. I can relate as I am encountering the same thing. I had my surgery 3 years ago and have been fighting an ostomy for all this time with the exact same problems you have. Life has been painful, sad and my marriage has felt the effects of my illness also. At the moment my cuffitis is so bad I have been bleeding for two days and cannot even hold in a suppository I'm supposed to be going to a black tie dinner for my son Friday eve and going out of town for college visits on the weekend and I'm in so much pain I'm up in tears right now.

I can only offer encouragement that the ostomy will hopefully end our pain and suffering and if you regain your health you will hopefully somehow feel thankful that you had the option for an ostomy. That's why I pray daily for as I know how hard this decision is to make. I am facing it also and feel so very alone and thankful for the support and encouragement from people here.
Akk3769Akk3769Member
PoucherlnTO- The jpouch is just a pain in the butt, literally!, so I think I am going to be happy with my decision to go back to an ostomy. Haha I didn't know how to phrase it when I wanted to know if the surgeon was going to sew up my butt but yes he does that!

Pouchomarx- Cataja is right when she says that a temp ileo is different than a permanent. I HATED my temp ileo but that's because I was having body issues and was so afraid to tell people about what I had or what I was going through. My ex husband thought it was cool and guys that I have been talking to now don't mind it because it doesn't change you as a person. My surgeon is Dr. Stocchi who I absolutely LOVE!

Jeane- I am so sorry that you are going through all of that. I hated doing the suppositories because it was too painful just to get them in. Maybe your GI can give you something for the pain and I am not ashamed of this but there were times when I would have to wear an adult diaper to certain events! Maybe a permanent ostomy is right for you as well!
R Rebe0505Member
i think it all depends on the person how they will feel about the bag..some folks are good with it have the right attitude,are generally confident in their own skin and are happy and healthy again..on other hand there are those folks who hated having it temporarily and probably not as confident will not be thrilled to have it .i think too if you had original operation in 2 or 3 steps you kind of know what its like..if you never had ostemy ,had one step like i did you really do not know what you face at all..however,i still maintain its up to the individuals attitude..if you except it i think you will find others will too including the opposite sex..at least this is what i read over and over again on site...
aka KNKLHEADaka KNKLHEADMember
Hi and best wishes. I now have a temporary ileostomy with a decision to make at the end of the summer to try a pouch again. I feel great, eat like a pig (I've gained 20 reasonably good pounds since in a few months!) I'm fairly handy and doing all kinds of improvements to the house and yard ...

I never regret having the pouch and will likely give it another shot, but feeling great is feeling great! I am 53 and married, so I realize my position is a bit different than others. The ileostomy has been a very good thing for me. The good news is you can always go back to an ileostomy, right?

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