Perianal Crohn's

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SophieL

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I apologise if this is too graphic but I was just wondering whether anyone else here has this form of CD? My doctor has told me it is very rare but just on the off chance...

I've been ill for about 3 years and was finally diagnosed this January after lots of tests, so still learning about this condition. I know there's lots of information about CD in general out there but I haven't found much on specifically perianal (and rectal) Crohn's.

It's really great to find this community, any experiences/input are much appreciated!

Thanks very much,

Sophie
 
Don't apologize for being graphic, that's what this forum is for. Welcome to the forum.

I also have this. About a month ago my rectum was fully closed and they had to open it up. I have had fissures and abcesses and have had a lot of trouble with both in the past.
 
I also have this form of the disease with some involvement of my terminal illeum. I've had non-stop fissures for basically the last 5 years and an open abcess for the last 2.5 years that has probably turned into a non-healing wound (I find out in a couple weeks when I get scoped). This form of the disease can be pretty painful at times, but I will say it is nice not having the constant diarrhea that others tend to get with crohns (at least for me because THAT would cause a lot of pain).
 
Wow I really didn't think anyone else would have this form, I guess I'm even more unusual in that I don't have any ileum/colon involvement at all and am lucky that I don't get diarrhoea constantly. The fissures and abcesses can be absolutely excruciating, as I'm sure you know, mine have been constant for about 3 years.

What treatment have (either of) you tried? My doctor isn't entirely sure what to do with me... Am on aza but it hasn't done anything so far. I assume surgery for the fissures isn't an option.

It's really good (in a not good way) to hear of people that have the same thing. Thanks for replying.
 
I used to have Crohn's in my ileum but not any more now I only have crohn's in my rectum as well. I'm on prednisone right now and that has helped tremendously. I also don't get D but I get contipated all the time. Not so much anymore though. I take a cap of miralax a day as well and that keeps everything soft and keeps my butt from being irritated. When I get permission from my new insurance I'm going to be going on remicade which also did really well until I had to postpone a treatment and then things went downhill again. Remicade is supposed to be the top drug for crohn's in the anus area. It worked like a charm for me. Also, soak as much as you can. Best of luck
 
Well I'm almost exactly the same, pred worked great for me, made me feel more normal (and manic) than I have in a long time but my doctor didn't want me on it for more than 2 months. I'm also taking (the UK equivalent of) Miralax which is a lifesaver. This might seem like an odd question, but since your symptoms sound so similar to mine, I was wondering what you would consider to be remission? I don't have diarrhoea so can't use that to tell - I don't think I've ever been in remission in 3 (very painful) years. Do you just go by pain/blood? Sorry to be so personal.

Will have a look at remicade if aza doesn't start working soon. Not sure how willingly they offer in the UK though.

Thank you again.
 
I would consider remission is going without pain and blood. Don't worry I'm used to talking about my personal stuff on here, that's what the forum is for. Our disease is very personal so everything we talk about here will be personal. I have been without blood and abscess for three weeks now and hopefully this keeps up. I don't get stomach cramps anymore but I get intense rectal pain. When I don't have that I guess I'm in remission although pred masks symptoms so I can't really tell if I'm in remission until I can go on remicade and stop pred.

Also, just wanted to let you know that remicade is infliximab. I would definitely look into it and ask your doc about it. I was on 6-mp for four years and it didn't do much for me. Remicade helped so much more and I felt better hours after my first infusion. I'm not sure about the UK but I'm pretty sure there are several people on here from the UK that take it.

Good luck
 
That's interesting to hear, I have thought before that maybe the pred only masked the pain. I guess I'll just wait and see what happens. Glad to hear you're getting closer to remission and hope you manage to get back on the remicade soon. I really appreciate your help, very reassuring to know I'm not the only person with a weird version of Crohn's (no offence :).
 
Don't worry about it. We all have strange forms of this disease. It's rare that any of us have exactly the same problem so we are all weird.:)

Hope you get better soon.
 
Yeah ive got it too, unfortunately. Ive got pretty much constant fissures. (The itching just drives me INSANE!) 3 fistulas and i had/have an abbcess that they initially drained 500mls of puss from in 2003. I have 2 open wounds that (ive recently been told) will never heal. Ive had Seton Sutures on 3 seperate occasions. The longest being for 18 months. I'm currently on Aza and Infliximab.

To be honest, the BEST thing that worked for me was going on an elemental diet. Within the 7 and half months I was on it, one of the wounds completely healed and I had NO pain atall. Within the first 2 weeks i noticed a significant improvement! I was literally days away form having a colostomy when we decided to try the elemental diet. However everytime i introduced food it got worse again.
Overall the Infliximab has been the best treatment for me (in the long term), the wounds will always be there and alwasy leak, but it doesnt bother me too much anymore. Infact i get very little pain form it at the moment. (And im eating normally)
And to think after all these 'bottom' problems, I still LOVE horse riding and do it everyday (much to my surgeons dispair!) LOL!! :)
Has anyone sugested pred foam enemas?
 
Vicky, hats off to you, amazing that you can ride, I tried riding a bike with not so nice consequences. Foam enemas... sounds like great fun. I tried Pentasa but had real difficulties using the suppositories with the fissures so open and sore. I did try a strong steroid topical cream but was scared of skin thinning with prolonged use. Have you tried pred enemas then?

What's an elemental diet? Sorry if this is an obvious question. When did aza start working for you? Or do you think it's not that helpful for fissures/abcesses? I've been on 50mg for 3 months and nothing, still blood and pain everyday. What I've gathered about infliximab is that it's often used for closing fistulas - I don't have any of these luckily so maybe it wouldn't be the right choice for me.

Thanks, sorry for all the questions! Very new territory :)
 
Welcome to the forum Sophie!
You were worried about being graphic? Not at all, we get pretty detailed here. That's how we get the best answers. Don't worry about it.
I actually used the foam enemas for a while. They weren't bad at all. The liquid ones are awful, they make you want to "go", but the foam - you hardly know it's there. I think it's like mousse for your hair, it kind of dissolves and goes where it's supposed to.
 
Hehe thank you, I'll let go of my prudish instincts then! That sounds interesting, wouldn't it have the same unwelcome side effects as normal pred does though? Or is it eventually skin thinning like standard hydrocortisone ointments are? I guess I just need to explore my options since the aza doesn't seem to be working out.

Thanks for your reply!
 
SophieL said:
Vicky, hats off to you, amazing that you can ride, I tried riding a bike with not so nice consequences. Foam enemas... sounds like great fun. I tried Pentasa but had real difficulties using the suppositories with the fissures so open and sore. I did try a strong steroid topical cream but was scared of skin thinning with prolonged use. Have you tried pred enemas then?

What's an elemental diet? Sorry if this is an obvious question. When did aza start working for you? Or do you think it's not that helpful for fissures/abcesses? I've been on 50mg for 3 months and nothing, still blood and pain everyday. What I've gathered about infliximab is that it's often used for closing fistulas - I don't have any of these luckily so maybe it wouldn't be the right choice for me.

Thanks, sorry for all the questions! Very new territory :)
Click to expand...

Its ok, thats what we're here for!
I was on Predfoam enemas a while ago, back in 2003, i didnt particularly like them, but got used to them. To be honest i cant remember how long i was on them for, i just remember my doc wanting me to be on these instead so steroids didnt effect my entire body. But i think i still ended up on steroids! Lol!

An elemental diet is a 'no residue complete food replacement diet' it comes in liquid form. The idea is that it gets directly absorbed and requires very little or no digesting, and therefore produces little or no poop. That was key for me, poop kept 'contaminating' my abcess and making it worse. Feel free to ask me any questions. Also me and Jan (soupdragon69) are pretty much experts :) so im sure she'll be happy to answer any questions also coz she's on it at the mo!

I've been an Aza for ages too, (i think way past the recomendation about 5 years!) I never noticed a significant difference when i started it. I know it takes a few months to kick in (as they've probably told you). But i can tell you that when i stopped taking mine (when i wasnt supposed to, coz i thought it wasnt working) I was the same for a fair few months then i got a BAD flare up! So even when i dont feel great on it, i know its better than not being on it!! lol! I've always been on 150mg.
As you said infliximab is supposed to be best for fistulas (which ive never really noticed to be honset) after my 15th infusion, me (and my doc) decided i wasnt getting any great improvement from it anymore so we missed one last May (with the idea to stop) , and by June I was back in hospital with an abdominal mass! So as you can guess we quickly put me back on it.
Overall i think elemental diets and infliximab might be something to consider if you get other problems in the future.
Hope that helps- sorry its a bit rambly!
 
Reading this makes me wonder if perhaps I might have perianal Crohn's as well. I have had fissures, and I've had recurring trouble with abscesses. I have a hard time passing formed stool ( I don't have to worry about that though, doesn't happen often!).
 
You can be as graphic as you like. You'll never come close to obtaining my level of obscenity and too much information. Everyone will consider it relatively polite conversation. :)

From what I understand perianal crohn's isn't a real classification. It's the same disease no matter where it strikes. It can affect anywhere in the digestive tract (and your whole body if you count skin and joint symptoms, etc) and just because it's in your rectum now doesn't mean it won't also be in your mouth or small intestine later.

I get hit from lips to rectum with ulcers and have all of the extra-intestinal problems too. As far as I know, though, I've never had a fistula in my life and I really, REALLY hope it stays that way. Inflammation and pain are the majority of my illness. Ulcers are (from what I can notice) just something that hits me once or twice a month in spurts that last a week or two.

I've got what I think is an ulcer in my rectum right now and 3 mouth ulcers (2 smalls on the roof of my mouth a and my lower right lip, and 1 visible one on my cheek). I'm probably working on more mouth ulcers though. I noticed a cluster of little bumps yesterday between the base of my tongue and my front teeth that I think may be developing ulcers.
 
That makes a lot of sense, Colt. I guess it's just like saying Crohn's colitis or ileitis. I mainly asked the question because I knew that isolated perianal disease was extremely rare and I'd never heard of anyone who had it.

From what I've heard some sort of perianal involvement in very common in CD, up to a third of people I think.

Thank you Vicky, that's really helpful. I think I'll stick with the aza, I suppose I was silly to think that it'd have the same effect as the pred (and my hyperactive happiness probably had a lot to do with how I felt about the treatment). I think my dr might be upping my dose a bit soon anyway.

Take care
 
Hi SophieL

You can add my name to the perianal list. The highlight for me was the cutting open of a large fistula and leaving it open to heal from the inside out. I had all sorts of tubes and string hanging out! The best bit was the surgery was on the 22nd Dec, and I had a flight home to the UK from Atlanta on the 24th. Needless to say I missed the flight and missed the first Christmas with Mum and Sister after loosing my Dad earlier in the year. Not a happy time, but Remicade has been a life saver, and since early '05 I've been very well. I wonder if that may be an option for you?

Your condition sounds very similar to mine. I used to wake up feeling fine, but I knew that as soon as I started moving around I'd have to get to the loo pretty darn quick. The pain from going was excutiating. I'd try and stop going but my body would take over and force it out and I'd be sweating in pain. From that point on in the day I'd be bed bound, and at its worse unable to move, or constantly moving in pain. It was awfull and at a time that I was being mis-diagnosed I didn't know what was wrong with me. When I finally got diagnosed (after the first colonoscopy some 7 months after falling ill) is was pure relief. At least I knew, and at least treatment was available.

I sincerely hope you get better, and reading your post brought back all these memories!
 
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Thank you for the article Isla, very helpful.

Brands, I'm really glad you've managed to find some relief, hope it continues that way for you. Thank you for the well wishes!

As for me, I think I'm going to give topical steroids another try and consider agreeing to up my aza dosage. It's all about weighing up the risks and benefits I suppose.

Thanks to everyone who replied, really means a lot to me.
 
I have perianal crohn's skin tags, they've caused me nothing but grief, it didn't help that they were mistaken for hemmies at their worst flare and having them during that time banded keeping them in a flare ever since (which has been 17 yrs now)...stupid doctors!

:)
 
That post was a little confusing pb4, but skin tags can be easily removed by just using a local anesthetic and what ever method you want to use to physically take it off. It's also medically justified (not just cosmetic and thus free in Canada) if they are causing complications.
 
Hi Colt :)

Actually, they can be removed once they've shrunk back down (out of flare) but while flaring they should never have any kind of surgery, the reason being is, if they were to cut them off while flaring (large/inflammed) then the area would not heal and end up causing a whole bunch of other issues (and a ton of pain), you see, my anal skin tags come from just right around the rim of the anus, so it's almost like my anus has turned inside out so to speak...having them banded (tied off) as if they were hemheroides (which is what they thought I had) while they were flaring (large/inflammed) has kept them from being able to shrink down (which they used to do on their own before I had internal CD or even knew I had CD)...it's confusing I agree but I've been warned not to let anyone mess with them or I'd be even worse off than I am now.

If you know for a fact of people who've had them removed while the tags are flaring I'd love details because I would be thrilled if they've come up with a way to do this without causing me any extra grief...I was hoping lasering them off would work but I just don't know if I want to risk it or if it's even a possibility.

Thanks for any info you might be able to share :)
 
I guess the concern is that if they remove them the inflammatory swelling will cause them to have insufficient skin to close the gap if they de-inflame. You should be able to have them shrunk at least temporarily using steroid injections that would have a strong localized anti-inflammatory effect. I don't know if they would completely take away the concerns or not though because I'm not aware of the intricacies of this kind of situation.
 
pb4, I had rectal skin tags removed during fistula surgery, and they grew back in no time. Not sure if the same ones grew back from the same exact spot or if I just grew new ones, but it might not even be worth the pain to have them removed. I was in pain down there anyways, and they about to be cutting away so I said "Hey, while you're down there..."
Good luck though.
 
Colt said:
I guess the concern is that if they remove them the inflammatory swelling will cause them to have insufficient skin to close the gap if they de-inflame. You should be able to have them shrunk at least temporarily using steroid injections that would have a strong localized anti-inflammatory effect. I don't know if they would completely take away the concerns or not though because I'm not aware of the intricacies of this kind of situation.
Click to expand...


What I was told by a few different specialists was if I had them removed (cut off) then the area would not heal completely and remain an open wound which wouldn't exactly be easy to deal with from that pain alone let alone BM's passing the area would be sure to cause re-occuring infections in the wounds...not the route I'm looking for.

Mine are quite large and I have many of them, they surround my entire anus so I don't think the steroid injections is an option for me for that reason and for the fact that they were already "messed around with" being banded like hemmies.

If you're able to find out if laser type surgery would be an option then please be sure to let me know because I'd give anything to get rid of them without it causing me a risk of other griefs.

Thanks :)
 
My Butt Hurts said:
pb4, I had rectal skin tags removed during fistula surgery, and they grew back in no time. Not sure if the same ones grew back from the same exact spot or if I just grew new ones, but it might not even be worth the pain to have them removed. I was in pain down there anyways, and they about to be cutting away so I said "Hey, while you're down there..."
Good luck though.
Click to expand...


HI my butt hurts :)

I was also warned that having them removed (once they completely shrink down) does not guarantee that new ones would not reappear, besides which, I've gotten new ones besides the old ones over my entire 17 yrs of having them...I was told the only time to have them removed is when they've shrunken completely down then they can even be snipped off with local anasthetic in the docs office...this is not an option for me because mine were banded (as if they were hemmies because that's what they were mistaken for) and this has left them flaring (large and inflammed).

You'd think with medical science, after 17 yrs, almost 2 damed decades they'd find a safe way to remove ones like mine....very frustrating to say the least.

The only luck I have is that so far (knocking on wood) I'm not a "fistulizing crohnie" nor a "stricturing crohnie" just an inflammed one.

Thanks for your input :)
 
There's a few reasons...1) the area...since feces passes through the rectom and out the anus, with it being full of bacteria this highly increases the risk for re-occuring infections into the wound. 2) the skin tags from my understanding is diseased tissue which is what's attached to the skin tag, if they risk cutting the skin tag off then there's no guarantee they'd get all the diseased tissue therefore making it next to impossible for the area to heal along with the area being "used" since bacterial infested feces would be passing through the open wound on a daily basis (and generally for a crohnie, many times on a daily basis).

This is how it was explained to me by a fantastic colon and rectom surgeon I saw after the damge had been done (the un-necessary hemheroidectomy performed by a stunned colon and rectom surgeon).

:)
 
Well I guess I don't understand why they couldn't perform this in hospital on "bowel rest." Which means nothing by mouth with iv fluids. Nothing would be passing while they healed.
 
It could take months of bowel rest and that still wouldn't guarantee the area would completely heal, then once the "area" was "used" it could more than likely open up a whole new can of worms...I know that some people have stated they had theirs cut off but the docs looked at mine and said they were simply too big, and the bigger, the better chance of having disasterous problems.

:)
 
I've got a question about this.

I get these ulcers every 3 to 6 months for the past 4 years or so, they take about a week to ten days to heal up if I'm very careful not to irritate them....they are external in the peri area, and the taint area, and up into the vaginal area. It hurts like hell and I'm a bit unhappy about it :(

I go to see my OB and get tested for everything under the sun every six months for years - nada. She believes its a Chrohns related event. So off I go to the GI, who believes that because of the area that its in the OB should take care of it. Neither one offeres so much as a pat on the head. I'm totally and completely f*k'd. Oh wait! No I'm not cause I don't dare get near anyone! :ybatty:
 
Welcome to the forum. Could it possibly be an abscess. I would go to another GI to get a second opinion and treatment if your GI won't treat you. Best of luck.
 
Ya you can have 3rd and 4th opinions if you really need someone to take you seriously. Remember not all doctors are created equal!!!!! Passing the buck doesn't seem very professional to me.

You could start with the simple non-invasive serum blood test - pANCA and ASCA and from there decide if you need a colonoscopy or other tests! Hope this helps!
 
hi Aenea, & welcome :)

ouch!! that sounds really painful and distressing :( it seems crazy that neither doctor wants to take charge of this problem and help you out!

i'd agree with Jeff & Isla - it's your body, you have the right to take it elsewhere if these guys are not giving you the care & treatment you need.
 
Heh,

Thanks for the encouraging word. These are tiny little things like the mouth sores mentioned in another thread, small actual ulcers - they vary in size and placement but are definately not abscesses (Had one of those one also a few years back - treated with surgery. MY MY what an experience)
 
It is very difficult to heal when you are continually going to the toilet. I have lost half my sphincter as a result. When I had a repair many years ago, I had a temporary ileostomy which allowed things to heal properly
 
Hello Sorebutt26.
Not sure who you directed this question to. I had a fiscal exam and some blood draw, the blood draw showed the Crohns was active again. The fiscal exam is when the doctor told me that it was Perianal due to the fistulas. Just had another 360 abdominal and pelvic MRI done Friday and go for blood work today, once the gastro doc gets that information, I go back to him to discuss treatment plan. Hope you are doing well?
 
toesaw said:
Hello Sorebutt26.
Not sure who you directed this question to. I had a fiscal exam and some blood draw, the blood draw showed the Crohns was active again. The fiscal exam is when the doctor told me that it was Perianal due to the fistulas. Just had another 360 abdominal and pelvic MRI done Friday and go for blood work today, once the gastro doc gets that information, I go back to him to discuss treatment plan. Hope you are doing well?
Click to expand...
Thanks toesaw.

I was just asking in general. Thanks for replying. I have many problems in my bum! I've had haemorroids, skin tag, polyp, fissure and now fistula's over the years. I have gastro problems too. Not major, however I do struggle with cramping, urgency and regular bowel movements. Had a Faecal Calprotectin which was raised, CRP and ERS blood tests, both slightly raised. Just waiting To find out if further testing will be done.

I was wondering if I'd be diagnosed with perianal crohns on symptoms alone or if there was a specific test to be done

XxX
 
Sorebutt26, all my problems started out as gastro, pain in my stomach, major cramping, blockages. Last July my colonoscopy came back clean, I was told I was in remission. Within six months, I started having problems with my bum. Burning, itching, redness, bleeding, hurt to sit too long, bathes helped some. The blood work showed the Crohns was active, that is when he did a physical exam and said he could see and feel the abscess and feel the fistulas. So more test are being requested. I am so sorry to know you are having these issues. I hope you find a comfortable way to deal with the daily "pain in the a**". Best wishes
 

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