abscess and fistulae

Hi, my daughter is 37 and has had Crohn's for 20 years she has had 3 resections and for the last 8 years has had an abscess and fistulae. She has learned to live with the constant "D" but the continual pain and drainage from the abscess on her buttocks is driving her insane. last year she had a temporary colostomy because she was told that it would heal the abscess and close the fistulae.....it didnt and she had nothing but pain and grief with the ostomy so after a year she had it reversed. She has now contracted perianal desease aand the pain when using the bathroom is unreal. She has been told that no medical treatments will work and the usual things like Humira and Remicade cannot be used because of the abscess. She has been told the only option is a complete removal of the rectum! she will not agree to this....does anyone have any solutions that have worked for them, we are out of options, she hasnt been on any medications, even antibiotics since before the colostomy 18 months ago....surely this isnt right, please help!!

Hi there. I am sorry not have any advice for you, but I do want to say "Welcome!" I am sure someone on the forum will have some ideas for you. I do hope that your daughter finds a hopeful treatment option and the pain and suffering can be lessened.:hug:

Hi Jackie, I had all of my rectum and colon removed at 19 (for UC). Had lots of problems with the surgery, including many issues you mentioned. Ultimately had permanent ileostomy at around 22 years old, and this year diagnosed with mild Crohn's in my terminal ileum at age 44. Surgery is a lifesaver- even if your daughter's life is not in immediate danger, surgery can get her life back. Having an ileostomy with Crohn's makes my illness much easier- I don't have any rectal pain and am fully continent. The only thing to do is to get other doctor opinions. Lots of support on this site for people who are thinking of or just had surgery, so please encourage your daughter to look around.

You mentioned "this isn't right", and I empathize. Lots of us in that club- remember, IBD is a truly cruel disease and nothing about it surprises me anymore. I had over 20 years without taking any meds and flared up the same year I get engaged. I had always been told surgery for UC is a cure so I wasn't too happy to get a Crohn's diagnosis this year. But that's when I also realized how fortunate my ileostomy was (for reasons mentioned earlier). Unfortunately with IBD, sometimes all we can do is roll with the punches.

thanks for listening and your replys, I agree this is a truely horrible desease and my utmost compassion is for anyone suffering from it. As I stated she had a temprary colostomy last year and had a truely horrible time with it,....bag blowing off, extreme soreness around the opening and hardly slept at all for the whole time. The fistulae and abscess never healed, even slightly, in fact the abscess continually closed and involved many trips to the ER to have it drained. I could not understand why no medical treatment was offered during this time to work with the ostomy!! She was having a fair result for a time with Humira but had to stop treatment because we were told that none of these drugs can be used while abscesses are present. Has anyone heard of an ointment or cream that can be applied to the rectum or anus to aleviate the pain when using the bathroom as this seems to be the major source of pain at the moment for her. My other question is does anyone know of a doctor or hospital in eastern Canada that is making any headway with new treatments or clinical trials for these problems?

Hi Jackie and welcome to the community. I'm so sorry to hear of your daughters predicament

Perianal disease can certainly be tough to treat. It sounds like your daughter has a tough case. I'm going to page Aussie to see if they might have any suggestions for your daughter as they're much smarter than me when it comes to this kind of thing.

Hi Jackie
If the newer drugs are not an option then surgery is probably the only way to heal these fistula. I had similar problems with about 5 exit sites onto my buttucks and also into bladder. can relate to the pain - its unbelievable! I put up with this for years but eventually gave in and had a panproctocolectomy with permanent ileostomy. But even after surgery it took a couple of year for the fistula to heal up. Glad I had the surgery though. Its no life having to deal with fistula/pain etc. Best wishes to you and your daughter.

Hi David and Jackie.

Jackie, my suggestions for your daughter would be:

1. Make sure you see a gastroenterologist and colorectal surgeon who specialize in IBD. It's a tricky disease that is commonly poorly managed.

2. Rather than biologic therapy (Humira and Infliximab) not being able to be used, I would argue that in perianal disease is when they really come into their own.

3. Ensure you have a perianal MRI to give a roadmap of the perianal fistula and abscesses.

4. Ensure a recent colonoscopy to look for colonic, particularly rectal, inflammation that can drive perianal disease.

5. See a good colorectal surgeon for an EUA (examination under anesthesia) to get the sepsis (abscesses) drained and seton stitches put in. This step in particular can make a great improvement to the symptoms.

6. Once sepsis drained, start biologic therapy. Would also suggest commencing antibiotics (ciprofloxacin 500mg twice daily) until seton removed.

7. Once the drainage from the fistula stops, remove the seton so fistula healing can start.

8. If none of this works, see an experienced dermatologist to ensure that it's not Hidradenitis Suppurativa of the bottom, in which case, plastic surgery would be more appropriate.

Best wishes.

Thank you so much Aussie for the excellent, concise information!

Jackie, when I read your post, I was quite confused but didn't want to provide you misinformation. I was confused because I was thinking along the lines of what Aussie said but I wasn't educated enough to say so with confidence. That Aussie stated the above (they REALLY know their stuff) makes me think you may want to get a second opinion on your treatment. Certainly do so before letting them remove your rectum.

Jackie,

It bothered me that I wasn't educated enough to reply with confidence so I skipped ahead in a medical text on IBD I have and read and reviewed the article, "Medical Treatment for Perianal Crohn's Disease" here. It basically echoed exactly what Aussie said.

Hi Aussie and David thanks so much for your input, she was diagnosed with Crohn's 18 years ago, before the new medications were available and developed an abscess and fistulae about 9 years ago. She has had methotrexate, Remicade and humira and the actual Crohn's isnt to bad, the main problem is the pain in the rectum. She can handle the abscess and has managed to keep it draining herself for a couple of years now without ER trips, for the most part, but as I said the major pain is in the rectum. We saw her gastroenterologist this week and he still insists that Humira cannot be given with open abscess's or infection!. He has put her on more antibiotics (the usual cypro and flagyl) and when asked he said there is no other treatment for this and stem cell research is still 8 to 10 years away even though great results are happening.He did mentioned a new antibiotic having success (originally used for liver problems) but isnt yet approved for Crohn's in Canada, does anyone know anything about this?

Hi Jackie, he's probably talking about Rifaximin, essentially not well absorbed from the gut, so has good concentration and effect in the bowel. Also, with Stem Cell Transplant, you absolutely cannot have any infection, so the abscess would have to be well treated prior (also, the ASTIC trial in the UK has been suspended following the death of a patient, so it looks like it will be quite a while before this becomes a viable option).

Generally, if you have pain around your bottom in the setting of perianal Crohn's, this indicates pus, so the key is to find it and drain it - perianal MRI and EUA by a skilled IBD surgeon (NOT a general surgeon) - "pain equals pus", unless it is something along the lines of an anal fissure which is also very painful - sigmoidoscopy should be able to answer this question.

Best wishes.

Hi Jackie,
I'm 34 and been dealing with abscessing and perianal disease since 2006. I'm kinda going through the same thing at the moment. Been stuck in the hospital for the past 12 days now, the word sepsis is being thrown around but my fever is low and I'm coming around. I have a temp loop ileostomy to rest my bottom and a perianal seton stitch. I'm currently on Humira and taking an antibiotic that is only IV called meropenem. I got a picc line so I can hopefully go home soon with homecare for the meropenem. I have questioned the humira but they say the combo is going to help... I'm giving it a go.

I'm going to take Aussie's advise tho and look into the Hidradenitis Suppurtiva since I'm being told that these are my last options next to a rectal removal as well. My rectum is in decent shape considering still so I'm not ready for that yet. My problem seems to lie in my rectal vaginal septum. I have a dermatologist now so I just need to wait for this appointment and see what they say... I'll keep you posted!!

Thanks for your great advise Aussie! That post should be it's own thread at the top of the abscess/fistula forum for everyone to stumble upon it!

smallfry said:

Thanks for your great advise Aussie! That post should be it's own thread at the top of the abscess/fistula forum for everyone to stumble upon it!

Click to expand...

That's a good idea. Jackie, would you object to us sticking this thread?

No, I am open to anything that helps, I find this forum a great tool and I am checking it daily now. I have just been told about Refaximin by my doctor, this isnt available widely in Canada yet but from what i understand it is having great results in other countries. Does anyone have any information? I was told that it is an antibiotic rather than an imune suppressant and works hand in hand with flagyl and cipro. After speaking to both doctors and pharmacysts it seems that this may soon be the "miracle we all wish for".

Has anyone used or been treated with Rifaximin, I am told this is working extremely well in a lot of cases, however it is not available in Canada for the treatment of Crohn's, it is however available for Liver transplant patients. Does anyone know how to get hold of this from out of the country, even my doctor said it is getting great results but his hands are tied...help!!

Hi Jackie, I live in the US, but get some of my meds from overseas because it's cheaper. If you can get a prescription, perhaps an online pharmacy can fill it for you. Google search and call a few to see which one would best fit your needs.