Ileostomy reversal

ileostomy reversal

Hi, as some of you are probably aware, I have a loop ileostomy. My ileostomy is from my small intestine. Most of my colon is still intact but I have had a little over a foot of small intestine removed where the ileum was. This operation was to allow anal fistulas chance to heal. I have had the stoma now for 7 months and next week (13th Feb) I see my surgeon to get the results of my MRI scan to see whether I can have reversal surgery. I am a little anxious naturally, and wondered whether anyone else here can offer advice on what the reversal surgery is like and maybe what to expect afterwards. I'm also a little worried that they may not be able to reverse yet because I still get some swelling. As I have a loop ileostomy its possible for stuff to spill over into my colon and I have to go naturally. Which I have to say is more than weird what with the stoma and all. As a result of this I still can gat a small amount of swelling down below, it doesn't last long only a couple of hours and it drains and then feels normal again. Has anyone else had this? I thought that the fistulas would heal but obviously theres still something there or I wouldn't be getting stuff leaking out. This happens even when I haven't had any swelling by the way too, not much but I'm not totally dry around the back end, could this still be the fistulas? Any of you who have stomas have the same problem? Sick of wearing pads and sick of these fistulas, does anyone have any advice on what else I can do to help them heal? I'm currently only taking 6 x 500mg Pentasa a day and 3 x 30mg Mebeverine oh and 1 anti anxiety - Ciprelax, 1 antihistamine and cod liver oil with evening primrose. Any advice would be greatly appreciated.


Ruth

I have an ostomy and still have gotten abcesses with it so its definetly possible to get fistulas while having an ostomy. Havent you had to pass what I would call mucus through your anus still? Everyone I have talked to says they have, and I read that before I even got mine so I was expecting that. 7 months is a pretty short time to have the ostomy. I know my surgeon wont risk a reversal until I've been not sick for atleast a year an a half....which is a long shot but i still have the option.

I'm a guy as you know, and I know what you mean about pads...IIII even have to wear them, its a good "tool" for fistulas though, especially if you get drainage a lot.

HYPERBEARIC CHAMBER can help fistulas heal. Its a chamber that was originally thought of to use divers who rose from the water to fast to re-introduce oxygen levels in the blood stream...the theory is...the extra oxygen in the chamber will heal the fistulas, just like oxygen would heal a cut or wound.

Did you ever take 4000mg of pentasa or just 3000? Everywhere I have read and everyone I talk to says the reccomended dosage is 4000mg, and I believe they give 2000 to younger children.

Hi, Yeah, I have passed mucous and because my ostomy is a loop one, I have also passed "normal bowel movements" smaller than usual but still well formed (sorry about the detail). I have been prescribed 4000mg of Pentasa for ages now, but some days I only take 3000mg.
I see my GI next week now, the hospital changed the app. I see him on Thursday so hopefully he will be able to enlighten me a little more. Thanks for the info.


Ruth

Good luck with your appointment i have a ileostomy and anal fistula with seton.Had the fistula for over 3 yrs and cant think about a reversal until its gone.Hope you get some good news or at least are alot more enlightened after the appointment

Hi and thanks. I saw my GI and my surgeon and all is not as healed as I would have wished for. I go in on Monday for a general anaesthetic for an examination, they think one of the fistulas hasn't healed yet I think. I may need another seton too. Hopefully all will go well.


Ruth

has anyone with crohn's actually healed a perianal fistula before? i dont think mine will ever go away

Hi Dekar
I did have 1 yrs ago that healed. With the help of a seton. Back then I didnt know what a seton was. Now I have 2 fistulas. Have had for 4 months now. Still waiting to hear from a surgeon. Ruth knows alot about fistulas. If you have more then one they are called fissures I believe. And they are a royal pain in the but.:lol:

TAMMY

Fistulas

Dekar said:

has anyone with crohn's actually healed a perianal fistula before? i dont think mine will ever go away

Click to expand...

I've had a perianal fistula for four years now and just developed another one on the other cheek!!! I have setons in place and the surgeon tried to do a LIFT procedure which is a very new technique for fistulas. It didn't work so now I need to make a choice whether or not to get an ileostomy to let them heal. Fistulas are stubborn but they are not the end of the world, at least I have to think that so I don't go crazy! Explore your options!

My son had an ileostomy and the surgeons would not reverse it until his fistulas healed. He also had setons in for 2 years. Eventually, we saw a well renowed colorectal surgeon who performed a fistula plug surgery. The surgery was done on an outpatient basis - nothing major. It was sucessful but unfortunately the next month, the fistula made another track. The surgeon said that his can sometimes happen, and performed a fistula plug on that track. We waited about 4 - 6 weeks, all looked good, no drainage or swelling, so we went ahead and reversed the ileostomy. We have not had any reoccurance of the fistulas - after living with them for 13 years. They used to come and go and can be a nuisance to say the least. I would always run my son a nice bath, and pour a capful of bleach (yes, bleach) in the water, and let him soak in this sitz bath a couple times a day - very helpful to relieve any discomfort and encourage drainage.

We too have had to deal with these issues.

Farah, thanks so much for writing! That is wonderful news! My colorectal surgeon is one of the best in Chicago and he has not opted for the fistula plug saying it has a poor outcome. I've had three flaps and numerous other procedures. My docs want me to consider getting an ileostomy to let them heal but i'm so scared since this is a major adjustment and to be honest, scary at first! Did your son have an ileostomy for the Crohn's or for the fistula? I can't imagine you as a mom having to see him go through all of that. I'm the mom of two young children and I cannot function completely with these fistulas. My Crohns is in a flare but it's the fistulas that are painful and discharge horribly. I've had this disease for twenty years and never let it stop me until now. I don't know what to do, I'm hoping God guides me to meet wonderful people like you to give me insight into my future decision. Thank you!

Jennyram - my heart goes out to you having to deal with this being a mom to 2 young children. My son was 11 yrs old when he was diagnosed with fistulizing crohns. For us, the answer was to get a stem cell transplant. Hopefully, you are nowhere close to that, but at the same time, just remember that we are making great strides in the field of research. Out of 24 sct patients - 9 have never had the crohns return. And out of the remaining 15 who took a short course of meds, 9 went back to being med free. And these were very ill patients. Why am I telling you this? Because I want to encourage you and to never let this disease stop you. Allow yourself to have bad days - goodness knows we all know what a truly bad day is all about - but remember, that it will get better. My son did not have to have the ileo cuz of fistulas - he was perforated during a colonscopy and had to have emergency surgery. We had the ileo for over a year before it was reversed. The baths that he used to take was in one of those whirlpools - do you have one at home? It is very helpful to soak in the whirlpool twice a day. It really does help to drain the fistulas and is soothing. To try and help you with your decision all I can do is share my experience. After living with the ileo for a year, we still had the fistulas - granted not nearly as bad, but did require surgery to resolve them before the reversal. I personally would get a sct in a heartbeat - but, everyone is different, and it depends how much you feel the quality of your life is being effected. I presume you are taking a course of Cipro? Let me know if I can help in any way.

Farah, you are a God send! I hope your dear son is doing well and thriving! I have very poor quality of life. My original fistula branched to the other cheek and I got rushed to the ER with an abscess the size of a golf ball exactly five days after the surgeon tried to do a "LIFT" procedure but couldn't due to a lot of infection. I am in constant pain and discomfort. Feces leaks out and so much pus. My Crohns has ulcerated significantly but it could be worse and it was before. We are supposed to be moving to the east coast to be next to my family but we cant until I get stabilized. Our house has an offer so it's crunch time to make a medical decision. I can't work, go on trips or even take my kids to the zoo or meet a friend for lunch. I am constantly on a sitz bath or in the shower. I'm on augmentin again but its very limited in terms of how much it can help me. I have the best doctors in Chicago and I'm on a wheat/dairy free diet with supplements that do seem to help. My heart tells me an ileostomy is necessary and will help me in the long run, but my mind is so terrified at the thought! I am letting God guide me but I want to be as well informed as possible. Stem cell? Where are they doing that? Last I read it was in Spain and Italy. Is an ileo that traumatic? I've talked to people who have a new life having one. Which short course of meds are you talking about?