Perianal Ulcer - Please Help!

[hannah-rose]

Hello all,

This is my first post and I'm really hoping you can give me some help and advice.

Is it possible to have crohn's and to have a perianal ulcer that will not heal, but not to have any intestinal or bowl ulcers, no pain at all, no vomitting or diarrhoea or blood...?

My surgeon seems to think so. I went to him a year ago with anal fissures and within that year one fissure healed and one became chronically infected and (I believe) necrotic, meaning it got huge and gruesome. I had it cleaned up under a general anaesthetic, but since then it's healthy and pain free but simply wont heal.

I had a blood test which showed a teensy bit of inflamation, an abdominal CT which was normal, and a colonoscopy which was normal (waiting on biopsy results).

I've been taking Pentasa for weeks now with no result, and my surgeon wants me to take corticosteroids but I'm quite worried as he didn't talk me through the side effects and when I read the leaflet there were loads and they seemed really dangerous. I'm still not entirely convinced I have crohn's and I wonder whether the ulcer wont heal because it is just a fissure and needs botox or LIS surgery. However when the surgeon did take biopsys at the time of the infection from the ulcer itself and 10cm inside the rectum he found granulomas. Also my surgeon seems to be unable to have a consultation with me without making me cry (I'm trying to change surgeon, I really can't stand him) and the whole situation is making me feel really low :depressed:

I'm so confused, is there anybody else in my position??

Thank you so much for your help!

Hannah

 

[hannah-rose]

I just searched perianal crohn's on the forum and found some interesting posts. It seems like people with this problem typically suffer from horrible pain and discomfort. This confuses me as I'm fit and healthy. No anal pain even at the source of the ulcer, and again to reiterate no other symptoms at all - no abdominal pain, no diarrhoea, no fatigue, no weightloss. I'm really healthy. I just have a big ol' hole in my bum

help!

 

[beth]

Granulomas suggest there is something the immune system is unhappy with, and is part and parcel of Crohns and UC. You can get variants which just sit in the rectum, but I'd have thought pentassa is so mild that it wouldn't do much for such a large sounding abscess.

A short course of steroids will reduce the inflammation to allow the fissure/abscess/ulcer to heal. It does sound a sensible thing to try.

Crohn's can be anywhere in the digestive tract, limited to one spot within, or endemic through the whole system from lips to bottom. Maybe you are one of the 'lucky' ones with it in one spot. I've never had 'gut pain', only pain from abscess and fistula.

 

[hannah-rose]

Thank's so much for the response. I guess I'm just finding it hard to fathom I have this disease when fissures have been part of my life for so long; it's hard to think about the fact I could have a disease when I feel so well.

I'm definitely willing to try taking steroids if there's a chance this thing will go away. I've been told to take metronidazole with it (no drinking, wooh) and also to continue with the pentasa (even though it's not really doing anything.)

I think my main problem is I really, really don't get on with my surgeon. I don't doubt his medical abilities, just his personal ones. I'm quite a robust person but this man has reduced me to tears with his attitude and behaviour on several occasions now, I feel like he doesn't listen to me, he doesn't reassure me, and it's got to the point where I'm so stressed and scared before seeing him that I'm starating to feel pretty depressed and anxious.

He left an untreated infection in my fissure for months without antibiotics or anything, hasn't confirmed a diagnosis yet, hasn't talked through with me the long term effects of crohn's, hasn't suggested any support groups, hasn't explained my medication and it's side effects.

I'm seeing another doctor for a second opinion soon, but I really don't want to see this man again, I feel I'm doing my bit in taking the medications and having the tests, but he isn't doing his bit in making me feel better. I really want another doctor - am I allowed to do this? There are other people I could see at my hospital, I just really want someone to reassure me that I can see somebody else if I want to. I don't think I can continue to see this surgeon and retain my sanity!

Thank you so much for your help,

Hannah

 

[hannah-rose]

Hiya Hannah
and welcome fellow Brit

Sounds like a course of Pred will help to heal your ulcer. Try not to fret about the side effects, and stop reading about them, just wait and see what happens, what will be will be!
And, any side effects will vanish, Puff, just like that! (when you stop them)
And, at the risk of repeating myself, again, of course you can get another doctor!
This one sounds like a right dick.
As a UK citizen it's your right to choose where you go for treatment and specialist.
Go back to your GP, they are the ones who have to refer.
Read about it here

This is a new govt initiative, so use it.
I wish you well and don't worry about the steroids, I was on them for nearly a year and they healed me good and proper.
And remember, no more reading horror stories!
Read the success stories instead! Loads of them on here.
lotsa luv
Joan xxx

Thank you! Thank you so much! You have no idea what it means to hear somebody being so reassuring.

I'd try anything to heal my ulcer, I can't imagine what it would be like for it to be gone, it'd be a miracle, I'd be bouncing off the walls lol.

I'm going to see my GP next week to discuss the sideffects of the steroids and hopefully talk about changing surgeons. It's so good to know that it's within my rights to choose a suitable surgeon, if the diagnosis of Crohn's is confirmed I'm guessing I'll be seeing a specialist regularly and there's no way I can see that bloke on a regular basis.

I'm still optimistic there's another reason for my ulcer but I'll crack on with the drugs and keep my fingers crossed they make a difference.

Thanks for your help

Hannah x

 

[PaulsPain]

Hi Hannah-

Yes, I don't most of the typical GI symptoms. I have mainly peri-anal disease. I have been battling with anal fissures for almost 6 years now. Last year, I finally went in for a LIS when the surgeon found my fissures looked more like ulcers. He right away suspected Crohn's since it looked like it based on his 25 years of experience. He told me that 2-5% of people with Crohn's only isolated in the peri-anal area. So he thought I had "Peri-anal Crohn's". Then I developed an abscess and second fistula which sealed the deal that something was not right.... That is what pushed me into a final diagnosis and treatment. Took me 5 years since I didn't have the "typical" GI symptoms.

I never did have a biopsy come back with granuloma. I did research and it sounds like they are not always present with Crohn's. That fact they were found is just one reference pointing to an auto-immune response.

I am not sure how it works in the UK. Is it possible for you seek out a CRS that has experience with Crohn's? Can you find reviews on the doctor's? Also, asking the people that book appointments, who people love is another good insight. Either way it sounds like you need somebody different that is more compassionate.

I wish you the best in getting things sorted out. It sounds like your ulcer is not painful - you are very lucky. My fissures have been pure hell - daily pain and muscle spasms. The LIS helped but I am not "cured" that is for sure.

 

[hannah-rose]

Hi Paul,

Wow that all sounds awful, I really feel for you. It's really interesting to know that even though you have confirmed crohn's you were still offered an LIS. When I dared suggest the botox treatment for the internal sphincter muscle might be useful for me my surgeon totally cut me down. I still genuinely think it would be helpful for me, encouraging blood flow and making BM less disruptive to the general area etc. Your surgeon sounds very knowledgable.

I guess I have to admit to the granulomas. At least I understand what they are now, my surgeon didn't explain it every well. In the UK I'm fairly sure I can change surgeon if I don't like him (and I really don't, my Mum hates him too, she may come at him with a bat if he upsets me again!) I can certainly change hospital, that's definitely possible, and there's a better hospital just an hour away from me so that might be an option. I'll certainly find someone who has the experience to help me I'm sure.

I was in a lot of pain when my ulcer was very infected and possibly necrotic - I couldn't walk and every BM was sheer agony. Since I've had it curretaged (cleaned up) It's been painless, obviously it hurts if the nurses clean the wound but otherwise I have no discomfort, even during BMs. I've managed to keep the area really really clean, I've found that really helps. I generally wake up, do my thing, have a hot salt bath for about 15 minutes, then shower making sure the area's totally clean, then I put a gauze dressing over it and I'm currently using an antibacterial wound gel. Mine is a deep wound as opposed to a fissure as such, but salt baths and cleanliness have meant at least the ulcer is really clean and healthy - so all the nurses say. Do you use the GTN oitnment still for muscle spasms?

Hope this helps, and thanks for your support,

Hannah

 

[PaulsPain]

Hi Hannah-

Yes, it does sound like you would benefit from a treatment that involves relaxing the sphincter muscle. I agree keeping the area clean is essential. I get kind of tired of soaking in the bathtub though......

I feel very lucky I had the LIS. My sphincter muscle was so tight from years of having the fissure. I used to barely be able to walk for 4-5 hours after a bathroom trip. And I don't think I would have ever healed. So now my spasms are just less intense and more bearable now when a fissure pops up. My CRS now definitely wants to minimize the cutting since my official diagnosis.

I develop a cardiac reaction (heart racing/feeling faint) from the GTN ointment. I think it makes my blood pressure drop to low - I am fairly fit and my blood pressure runs low normally. I basically tried all the conservative methods for years since I was "scared" of surgery. I am 36 and never had to have surgery in my life....

Best wishes. Hopefully you can get a diagnosis if some underlying condition is causing the ulcer. If not, then you should be able to move forward with conventional treatment - botox/LIS. I spend a lot of time on another forum that is an anal fissure support forum. Botox sounds like a mixed bag in terms of success. My CRS told my I would not be a candidate since I had to much scar tissue.