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Why would they remove a pouch for blockage issues and not go in first and try to remove them? Tanking out the pouch might not solve this issue as you might form more adhesions equals blockages But now with a ostomy. Im in a similar position.
I wish you the best! Pouch removal sounds scary.
I think in this case "difficult surgery" means it's difficult for the surgeon. It doesn't mean the usual recovery is crazy difficult.
IDK after reading about what people on this site claim. And my GI was like it's not pretty either. I guess some people do well but with my history of adhesions it might totally make things worse if posible
I wish you the best results! I definitely agree that having a stoma is better than dealing with a poorly functioning jpouch.
Just wondering: will they be doing your surgery laproscopically? Will you have your ileostomy placed where it was before? Did your surgeon discuss possible complications?
Three weeks? That seems like an incredibly long time. I know that with my pouch the transit time from mouth to the other end is under 24 hours. Even 3 days of optifast would clean me out almost perfectly. You might want to double check these instructions.
I agree that living with a well functioning ostomy could be miles better than just surviving with a misbehaving j-pouch. Good luck and keep us posted.
Please don't take pouch excision surgery lightly. The surgery can go well but like in my case, I had severe complications starting a few wks after surgery and those complications have only continued 7 months later. I'm still not healed up and while I realize that I'm not the norm and most do very well after pouch removal, please keep everything I'm saying in mind. Why not consider a diverting loop ileostomy where they disconnect the pouch and give you a temp ileostomy and see if that resolves your issues?
Des- Do you think the perineal wound is the most significant risk for pouch excision? I think that pouch excision is necessary for long term health as leaving it in there means it will become increasingly inflamed and dysfunctional overtime. Pouch in-situ is more of a temporary measure. Have you asked about flap repair to heal your perineal wound? What were your other issues?
Desisn,
What complications? Oh my I might be headed this route. Do you have any quality of life back?
SolomonSeal, I was told by Dr. Remzi in Cleveland that there are many patients who do well for many years with their pouch disconnected. If, however, you have significant perianal disease like I do, the disease keeps attacking the pouch even though it isn't being used.
I'm not going to lie. I have gained a good 15 lbs because I have better absorption now that the pouch is gone. But that's about it as far as benefits go for me. As for my Crohn's, that hasn't let up one bit. I still have e. nodosum, sweet's syndrome, arthritis attacks, uveitis and all those other fun extraintestinal manifestations. I wouldn't say the perineal wound is the worst part of recovery. Yes, I have to do sitz baths at least once or twice a day to alleviate the pressure and yes, I have to wear pads all the time due to constant drainage. But it is not the worst part. The worst part is the huge fluid collection and pelvic fistula that have formed in the place of my j-pouch and the multiple painful drains they've had to place in my lower back that collect fluid down into a bag attached to my leg. Coupled with managing a PICC line and 3 antibiotics along with keeping up with my ostomy and restarting biologics, I'd say that's been the hardest part of the recovery so far.
Flap repair is massive surgery. I've spoken to and met others who have had it and it is no joke with plastic surgeons taking a piece off the leg. It is approx 70% successful and if you have perianal Crohn's like I do, I hear it doesn't take very well. I am going to Mayo Clinic this week to see if they have any answers for me so wish me luck because the struggle's been real.
AllyKat, yes, I'm starting to finally get some quality of life back thanks to the biologics but this surgery has so far been the hardest for me and many of the people I've spoken to about this surgery have said the same. But that doesn't mean your case will be anything like mine. My complications are rare so please don't be discouraged. Dr. Milsom is a great surgeon and I'm sure he will do a fab job but don't jump into this surgery without being 100% prepared first.
Have the drainage lessened at all? Is that why you are on antibiotics? Do you see any light at the end of the tunnel? Who took out your pouch? I was just thinking this am that we have this j pouch surgery to make our lives better, than for some, like you and me, it just comes back to haunt you. If I had know or been told more 15 years ago I just would have had a ostomy. I had major complications after the first surgery. Yes, Milsom was able to help me. It took a while with him cause he may be a good surgeon but he does not diagnose too well. I've had lots of other issues with the pouch along the years. I hope I'll have some kind of answer from the GI today. I have surgery scheduled for Thursday for possible adhesions but GI thinks the pouch is also dysfunctional due to chronic pouchitis. I can't even get in to talk to Milsom before then so I hope they can advocate for me. I have no idea what's going on. THis hospital is a mess.
With all that is going on are you housebound? Do you have help? I'm by myself I can't image what you are going thru
Hi I am facing removal as well this is month three do not have a date as yet. Had a CT so the surgeon could see if the Crohns was in the small bowel as well was fortunate and it appeared clear. Was shocked to find I have stress fractures in the sacrum three to be exact and probably another one around the front although they could not see because of gas build up. The pouch also is attached to the abdominal wall which will take awhile for the surgeon to cut away. It is believed the fractures are the result of three years of prednisone they will not heal until I am off the drug in the meantime I was told to be careful as I could suffer a hip fracture. The pain is bad if the pred goes below 20 mg which I can't stay at anyhow as I end up blocked at the inlet to the pouch. Has anyone else run into this issue and how did you make out?
What is causing the inlet to block? Pouchitis? A stricture? Why are you on pred? I'm also facing some unknown issues but I too have mega rolling draining like gas. I do have chronic pouchitis which stop responding to meds. Tests show everything normal though
Have been told I now have crohns which is the cause of the inflammation in the pouch when inflamed the inlet gets narrow dilation does not help. Biopsies show idiopathic IBD as well as a granuloma Do get poucitis some times but the symptoms are different I also bleed a great deal just had three infusions of iron for this. Pred is the only thing that helps the inflamation have tried all other options including remicade and methotrexate but the side effects as you can see can no longer be tolerated the pouch has to go.
I am really scared. You all sound brave. Thank you all for sharing your experiences. I have been trying to find a discussion about this. First hand accounts will help prepare me for what's in my future.
My GI at Mayo's is scoping me next Tuesday and the following week I have a consultation with him and a surgeon. My GI is expecting to do a dilation of my efferent limb, as I think it is the same problem that it was when dilated in February. He wants to do the scope himself so he can further evaluate what to do, possible have a dilation performed under anesthesia by the surgeon. I am going to talk about going to an ileo with them too. It's been 4.5+ years since take down and things have just gone progressively downhill. I am feeling like I did when I decided to remove my colon. It's a peaceful - weight lifted off of me - feeling.
Thank all of you again. I think I would have gone crazy without the support from everyone in the wonderful support group.
Frosty, I agree with the way you are planning the surgery. Proactive vs emergency surgery is always better for everyone, like after the holidays. I'm so sick and in pain I will plan the surgery sooner, unless they assure me that some action to save it will work. I have no life. I only leave the house for medical appointments. I have many health problems but it really is the j-pouch problems keeping me isolated. I'm a good on-line shopper.
No I'm not brave. I honestly wanted to die rather than go thru this again. I'm still hoping for a good outcome.
I hope you are feeling well soon Ally.
I may be in the minority here but pouch removal surgery was one of my easier surgeries. I had a very textbook recovery and now I have my life back. Worst decision I ever made was opting for a j-pouch and best was to raise the white flag and remove it.
I too am interested in how your recovery went am presently waiting for the same surgery this is the fourth month. Where you on any steroids, any problems with the healing where the anus was removed, how long was your hospital stay? Did you find it hard to sit for a while I will have a three and a half hour drive back home after release the Dr. says I'll be in for at least a week if all goes well I am anxious to have it done and scared as well. Being on pred. Will make things hard to heal and now I have stress fractures in my sacrum as well the pain is not too bad because of the pred. But will increase as I come off the med.
Thank you for sharing your experience with us vstRN. I talked briefly with my GI before my pouchoscope today. I told him I think it might be time to quit trying. He scoped today and a week from tomorrow I have a consultation with him and a surgeon he's recommended.
I am stubborn and never have been a quitter. There comes a time when effort and drive let you down. It's been a long 4.5+ years. I've battled c.diff infections, have chronic cuffitis and chronic pouchitis. He just dilated me today at a different place than was done in February. The antibiotics are not helping. If they are, they aren't doing a very good job.
So it's good to here good news!
I think making the decision to actually go through with a permanent ileostomy was the hardest part. Like any surgery though, it wasn't fun. But it really was pretty uneventful. I was not on steroids and there was no issue at all with the wound healing (I know I am very lucky for this). I did have mucous drainage that lasted for a few weeks which I was told was completely normal. And no, sitting was not that uncomfortable. My bottom was certainly a bit tender for a few weeks but I could still sit down, although slowly.
My surgeon had warned me that this surgery would be somewhat similar pain/recovery wise to my second surgery (j-pouch creation). That was my hardest surgery and the removal was significantly easier for me.
I stayed in the hospital for either 4 or 5 days. Went home on Percocet and transitioned to Tylenol a few days later and only took the Percocet at night. I was back taking care of my kids again a week after surgery (WAY too soon but this is always the story with my previous surgeries as I don't have that much help). And I was back to my normal self within 3 weeks.
Honestly, as much as this was not the outcome I ever imagined or desired in any way, I can tell you that this is the first time in many many years that I feel like a normal person. I have energy and am living again like someone without a chronic disease. It is also the first time since getting diagnosed with UC 11 years ago that I am not anemic and my bloodwork is completely normal.
I'm so sorry that you are all in this position as I know how much it sucks in every way possible. Reading some of these posts triggers such horrible memories of such a miserable and hopeless time in my life. I only wish that I had done the removal sooner.
Thanks for sharing some positive. I'm less than a week out and feel awful. The pain not too bad but I still don't feel like eating, I'm super tired, no taste for anything, I just want to be normal and getting discouraged. I've been thru the mil with my pouch And want to feel good. I'm in my 60 so I guess I can't expect a speedy recovery like you younger gals but still.....
