Hi U B Tough I wanted to reach out say hi, and that yes, unfortunately I have been through similar, mine went to both my bladder and vagina. That was 4 years ago, back to current day I am again in...
Hello Erica, I had my ileostomy reversed March of last year, and for months I was assuming that my bowel was taking it's time to readjust, to the point that I thought it never would. My consultant...
Hello there, I just really wanted to reach out to say I've felt your pain! For me, thankfully remicade closed my fistula and no more need for setons. A usual sofa cushion was my ally through my time,...
Hello. I'm unable to offer advice but wanted to say I've been through similar. I was due to have surgery for reversal of an ostomy and a couple of weeks prior I noticed I had a swelling which was...
I completely understand with the not knowing what's normal. Do you have a follow up appointment or a nurse help line that you can call? It may entirely be down to the recent surgery and body...
Good afternoon,I had a colostomy reversal in 2000 and I had no issues at all, I was back at work within a couple of weeks and don't recall any problems with rushes to the loo, etc. Back to the...
Hi there Ouch perianal abscess, that brings back memories. I had to apply gauze all the way through the healing process due to having a seton in place. The wound still healed a treat, although it did...
I've had a bowel to vaginal fistula, this was when I was really very ill and also had a bowel to bladder fistula too. After a long surgery to remove some bowel, my surgeons decided to leave the...
I don't know if I had mesh put in but my lady bits have definitely "tilted"...
I have the same happen to me, outside of the wafer and not broken skin - exactly as you say a strip of redness. I haven't a clue either, so sorry not to have the answers but appreciate if anyone else...
A hug coming your way. I absolutely feel your pain and frustation, I had constant UTI's with my RV fistula. Not a pleasant experience at all. Take care of you Debbie...
Oooooh I so know what you mean about the smelling "something". I too am very lucky leak wise but the odd time it has happened that's always the first thing I notice. Here's to it being a one off and...
Reaching out to you with a big hug. It's unbelievable how far and quickly the mess spreads, worse when over bedding. There have been times I've had to wake my other half saying get out of bed quick,...
I ate regularly too. I had to stay in hospital for a couple of weeks after surgery as was still on TPN but (as much as you can with hospital food) I tucked in to pretty much everything. As ByeByeUC...
Hi WhitneyCasandra Awh feel your pain, literally and I still loathe the pre scan drink. I've had various concoctions for both CT and MRI and none of them are pleasant - yuk! I had persistant perianal...
When my perianal fistula healed (through remicade) the seton was taken out at outpatients. A simple cut of the seton, bit of a tug (as NY-Sooner says skin had formed round it) and seton was out. It...
Hi Cinnamon174 Unfortunately with the drugs available for IBD, there is a lot to consider with side effects or long term possibilites. For me I opted to take Remicade and was on the infusions for 18...
Thats great news! Well done you :)...
HI Smd7129 I'm not sure if my message will reach you prior to your scope, but if so, I had one last Thursday and I would describe as uncomfortable rather than painful. I felt a lot of pressure but no...
Hi Hope in Healing. I'm not going to be a whole heap of help aside to say I would definitely get this checked out. Thankfully after ten years of fistula woes mine has healed but I had a draining...
Thank you Halo, and also for starting this thread - I've loved reading through the names. We have to go through so many horrible situations that it's good to be light hearted and have a smile. Hope...
2 for me Rayal...
Right hemicolectomy in 1999 with colostomy reversal in 2000. I had problems with anal fisuta inbetween but stayed clear of big surgery until last year. So a 13 year gap for me....
piglet - which sounds cute I know but it stems from the stoma always seeming to be happy when covered in poop (as the saying goes, as happy as a pig in s**t). It's funny how the name has stuck and...
I'm sorry not to have advice or be able to comment on this, as thankfully I've never had to have this procedure done. It sounds so awful I just had to send a hug....
HI Lynn This is fantastic news - isn't it great to get "life" back. My Ostomy is only temporary but I join you in loving the pain free, being able to eat again and having the energy to be active...
Hi Volleygirl Firstly huge hugs, any part of dealing with Crohns is always hard but a fistula in this area is never good news. I have had perianal fistula in the past of which remicade was a great...
Thank you lovely people, it is about being gentle with ourselves and not completely having a wobble (like I did yesterday) when things aren't as we hope. I felt a bit more with it today then 5 mins...
Dear all, As my title asks, how well did you cope emotionally with returning to work after surgery or being signed off long term? My Crohns was diagnosed in 1999, with a right hemicolectomy and...
oh spookydeuce - it's beyond horrid isn't it. I have been experiencing the same and finally (its taken some time) a bowel to bladder fistula was confirmed via MRI just prior to Christmas. I knew it...
Hello lovely985 I am going through similar to you. I've had fistula's previously but always draining out on to my skin. I've been ill since July with symptoms worsening until not only puss and air...
TO GB1983 I have no advice unfortunately but I wanted to give a hug as I am currently experiencing similar symptoms, I'm on my 7th course of antibiotics (since July) for the infections and am in line...
Hi Julia Ooooooh I so agree! Thats why I was certain at the start of this flare that I have another fistula, you just can't mistake the feelings that it/they give. I was in contact with the hospital...
Thank you for replying Julia, absolutely will report back with updates. Can I ask what medication you are on to help and have you experienced a lot of pain with regards to the fistula and symptoms...
Firstly thanks to everyone who contributes to this form, while I don't post regularly it's a daily habit to come here and read posts and feel comforted that I'm not alone in the pain, uncertainty,...
Hi everyone, thanks ever so for replying. It's good to know you're out there (if you know what I mean :) I also wondered whether the side effects were due to the whole barrage of medications that's...
Thank you kazbern, that's really appreciated. This disease is bad enough let alone adding the medication quandries into the mix but I feel better having other options to discuss at my next...
Dear all Thank you for reading. I wonder if you can help me. I have had a nasty flare after being in remission for two years. I am currently on budesonide as a "quick fix" for two months, just...
I haven't had a bladder fistula either, although this is currently under investigation as I am experiencing kidney/urinary tract infections with a current crohn's flare. I have however had fistula...
Hi sgirl I could never sleep the night after my infusion but thereafter I was ok. I hope your sleep pattern gets back to normal soon. Take care Debbie...
First of all big hugs, when being told about all scenario's it does sound very scary indeed. I have had two anal fistula's, one which I had a seton in for about 10 years. If this is what is advised...
Hi Estrella I had a seton for many years, a draining one. On one the knot was so huge and painful (this is going back a few years) I had anaesthetic for another to be put in, and also another time...
Exactly the same for me. I stuck with 6mp for 3 months to see if the side affects got any better, unfortunately they didn't. I couldn't tolerate it so had to come off it. Two days later all the...
Hello Grateful for any advice. Funding has been put forward to my PCT for Remicade infusions but my hospital warned that the borough I live is notoriously bad at a) making the decision, can be 6...