best med for JUST perianal Crohns???

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HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 12/21/2009 1:33 PM (GMT -7)   
Some of you have probably already figured this out, but I am avoiding big meds.  I am looking at some serious perianal issues with tags, fissures and general discomfort.  I am going to my GP in early January and then moving on to a new gastro hopefully.  I want to go in with an option and not just hear...so when are you going to start Remicade...again.
If the only thing you had to fix was the exterior or immediate interior issues, what med would you do?  Is there something that can treat the symptoms only???  I am going to be better at taking my maintenance meds ( a promise I made to a friend), but want to see if this can not be tamed before they kick back in more.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 12/21/2009 2:52 PM (GMT -7)   
I too suffer from some perianal crohn's issues. Predominantly a non-healing ulcer/fissure with a small fistula. The ONLY thing which has helped is Remicade. I recently completed my third infusion and the last of the induction phase infusions. I haven't had any drainage from the fistula in weeks now. The ulcer/fissure is slowly getting smaller. Nothing else has really worked for me - 5-ASAs, 6MP, flagyl, cipro, etc. Flagyl seemed to help a little, but not like Remicade.

Hope you find something that works!
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 12/21/2009 4:07 PM (GMT -7)   
My peri-rectal abscesses were having a big old party at my expense, so I had to go right for the big guns. I am on 6MP right now because I am allergic to remi and humira. I haven't had an abscess for 18 months.

One strong arguement for going with big guns is to stop damage. Some damage can be permanent, and surgeries can disfigure. But these decisions are very personal, and I agree that going to a big gun can be scary at first.

Take care.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 12/21/2009 6:32 PM (GMT -7)   
that is my only complaint too. mine flare up in hot and humid weather and/or if i do excessive amount of walking. remicade did nothing for it. i even got a fistula from my colon to my bladder after being on remicade for 6 years, so my opinion of that drug really tanked when that happened as it could do not it was supposed to do. the corticosteroid creams do help some. neomycin HC suppositories help sometimes when the pain is a bit more in the anus. 6-mp, which i was on for 14 years, did nothing for it. sitz baths/spa in very very hot water does help though.

i'm possibly going to see a specialist in oregon in january whom my naturopath said may be able to help me with this. i bet my insurance wont cover it, but hey, the chance is worth it so i'm rolling the dice. it makes sense that it never heals cos the doc just lances it - it never gets cleaned out. that is why you get antibiotics which help very short term, like a few weeks or so. so i am curious to see what this other can maybe do for me. i'll let you know in a month or so what happens. hopefully he can treat me.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 12/21/2009 6:57 PM (GMT -7)   
Many people have success using rectal meds for their perianal issues, worth talking to your doc about steroid foam (my favorite is cortifoam)...good luck and feel better soon!

:)

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 12/21/2009 9:44 PM (GMT -7)   
Would cort enema or rowasa help?


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 12/22/2009 6:28 AM (GMT -7)   
Thanks guys....
Crazyharry...if your trip to the specialist is denied, try having your regular doc write a letter explaining the other forms of care that were tried and failed. I work in health insurance and a calm, detailed letter can go a long way in getting coverage. unfortunately, a non-traditional care is not always allowed by strict policy language, but if it can be proven to be a better course of care (or more importantly a less expensive course of care) the RN case managers at your insurance company could realize it is worth covering.

pb4...thanks I thought you would have some good ideas as you have some similar issues. I am looking to care for only that part of my anatomy I am going to go back and attempt the probiotics again in January as you seem to have had great success with them. I didn't have a good reaction to them the first time, but I still wonder if it wasn't a flare up or flu that I had at the same time.

Fun Guy...thank for the other Rx names. I have never been offered non-oral or anti-TNF options and could not remember all of the names.

I am going to ask about all of this when i get my new GI and also ask my well trusted GP about them too. Thanks again
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 12/22/2009 1:17 PM (GMT -7)   
I'm late in replying, but in case you're still looking for ideas, here's some things that have helped me. I've used a store-brand ointment meant for treating hemorrhoids. It has an applicator tip about 1½ inches long so you can get a bit of the ointment inside the anal opening. It seemed to help reduce some of the swelling. I have also used a 1% hydrocortisone cream externally (available over the counter). Something that seemed to help a lot was careful, limited use of an anti-inflammatory taken orally (naproxen, or while I had some left from an earlier use, Vioxx). This really seem to help a fissure heal up. But my GI issues are mainly rectal, so modest use of anti-inflammatories (always taken on a full stomach) isn't as big an issue as it might be for some people with Crohn's.
 
I see Flagyl isn't an option for you. But perhaps a different antibiotic might help if the topical methods don't work? Feel better!

dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 12/22/2009 4:08 PM (GMT -7)   
My son has mainly perianal crohn's also.  Started back in March (09) with what we now know was an abscess, he also had stomach issues and multiple trips to the bathroom daily.   He was prescribed cipro and flagyl which made the abscess less painful but after almost 4 months of being on it it did not clear up.  The abscess burst spontaneously and started draining in May.  In July he started SCD diet and in August LDN.  His abscess is now completely gone, his fistula is still draining but is hardly painful at all, and he says it is steadily getting smaller and less drainage.  This has not been a quick fix, rather a long drawn out one with 3 steps forward then 1 back, but he is steadily going in the right direction.   We too felt that we didn't want to do the big guns medicine at this time, mainly because of his age and cancer risks for young adolescent males.   We are very pleased with his progress, he's also on probiotics, vitamn c, vitamin d, turmeric, and omega 3. 
Good luck with your decision.

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 12/27/2009 8:17 PM (GMT -7)   
My doc subscribed a "compounded" nifedipine/lidocaine ointments...there are a few others too...I have included some links that might be helpful..

en.wikipedia.org/wiki/Anal_fissure
www.jfponline.com/Pages.asp?Aid=1423&issue=March_2003&Uid=
journals.lww.com/dcrjournal/Citation/2000/43030/Nifedipine_for_treatment_of_anal_fissures.26.aspx
www.wjgnet.com/1007-9327/12/6203.pdf
Hope this helps
"The earth laughs in flowers"


amytupelo
Regular Member


Date Joined Nov 2009
Total Posts : 38
   Posted 1/2/2010 7:33 PM (GMT -7)   
i also have lots of probs with fissures, tags, roids, etc.. but no fistulas. i was using corticosteroids like crazy (anusol, proctofoam, etc) and my rectum seemed to be getting more and more irritated. my doc prescribed me canasa suppositories.. I LOVE THEM! they reduce inflammation but dont thin the skin like steroids do. they are expensive, though, depending on your insurance. canasa is basically pentasa for your anus.
32/F
crohn's terminal ileum - 11 years
pentasa, entocort 6mg, b12, align, canasa
allergies: remicade, imuran, 6-mp, cipro, levaquin


amytupelo
Regular Member


Date Joined Nov 2009
Total Posts : 38
   Posted 1/2/2010 7:34 PM (GMT -7)   
rowasa is also the same kind of thing, but in an enema form - also expensive.
32/F
crohn's terminal ileum - 11 years
pentasa, entocort 6mg, b12, align, canasa
allergies: remicade, imuran, 6-mp, cipro, levaquin


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 1/3/2010 7:38 PM (GMT -7)   
I've tried rowasa (enema) and found it VERY hard to use due to the pain. It was painful enough trying to get the littlest amount stool out let alone sticking an enema up there... Sometimes I could get the enema inserted and the liquid in, but right after have to sit on the toilet to let it out due to the pain. So I had to stop using that. My doctor also prescribed me nifedipine compounded and did help some with the fissue, but also recently got AnalPram and I think it does just as good. I had been taking Imuran, entocort, pentasa, but most recently LDN. I have been taking 2mg of LDN for approx. 2 months now. I have tapered off of the Imuran completely due to research showing it can prevent LDN from working and tapered to 3mg of entocort. I continue taking 1 Gram of Pentasa 4x/day.

I am glad to report after years of anal discomfort, it is starting to become better. Instead of multiple BMs a day (4-6) everyday, it is down to about 1 day a week with multiple BM. I can only hope it gets better from here or at least not any worse.

Post Edited (ChronnieMan) : 1/3/2010 7:42:20 PM (GMT-7)


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 1/3/2010 11:13 PM (GMT -7)   
I have permanent fissures left over from my diagnosis. They get sore and irritated when I'm having a flare, but when I'm feeling fine they dont really bother me. There are a few things you can do to make them more comfortable.... the biggest, for me, is Calmoseptine. It's an ointment you put on "the affected areas" and it really really really really helps. You can get it at any pharmacy, but most don't keep it in stock so you'll probably have to ask them to order it. I typically keep a little bit on there 24/7. I put some on after I wipe, after I shower, or if its uncomfortable ill sometimes wipe it off and put fresh ointment on. I carry a tube with me wherever I go, flare or not. I also recommend investing in nice soft toilet paper. It's worth it. Soaking in the tub also helps.

Also, stay away from bicycle seats.

copy/pasted from one of my other posts.
21, Male, diagnosed over Christmas Break of my Junior year in High School.


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 1/3/2010 11:55 PM (GMT -7)   
the premise of your question is asking for a medication that treats the crohns exterior and is misguided in that crohns is genetic or diet related and perhaps a result of the permeability of the bowel (if inflammed, there is problems)...since you cannot change genetic you must change your diet or at least attempt to change the consistency of how the stool passes through the bowel (the theory being the consistency of the stool whether too soft or too hard requires correction). The cause of the problem is therefore not treatable from the exterior when the cause originates interior such as from the foods you consume. In other words if you have exterior problems it is likely you have interior problems as well that contribute if not cause the exterior problems. I searched a long time to solve your question and unfortunately did not find an answer, probably because of the explanation I have provided above.
Having said that the baths are the best especially salt baths and you need to get super serious about doing them. I have read about a very cold followed by very hot followed be very cold (as in ice cold) soaking approach but reluctingly offer it,, as it mite only provide some temp relief. But as can be seen the question avoids attention to the diet when attention is required.
There is another possibility in crohns possible relationship to the Mycobacterium avium subspecies paratuberculosis, MAP, in that,, to avoid the accumulation of MAP is to avoid where it mite not be killed off such as in milk thus avoid milk products. I think everyone knows the consistency of their stool and when a week of metamucil is warranted. Sometimes avoiding wheat for awhile can help, even though you may not be celiac also try avoiding gluten for awhile,, as these suggestions alter the stickiness of the stool as well ...less gluten =less sticky. The bowel needs to rid gas and when the stool is very glue-like the gas does not pass (as easily). persistent perianal problems suggests stricturing problems somewheres upstream or something like the exterior of the bowel wall stuck to another bowel wall. The perianal problems require a fiber adjustment. Adding olive oil to diet mite logically be helpful as a lubricant but unfortunately I find it mite also add to stickiness, so perhaps a mineral oil of some kind. For low fat diets fat must come from somewheres so you need to sort of find your happy medium of undigestable fiber that you consume and the amount of fat. see
http://www.wehealny.org/healthinfo/dietaryfiber/index.html
so the happy medium mite be somwhere between the diets shown,,in other words their optimal diet has extensive fiber which mite not be optimal for you and vice versa,, the typical american diet mite need some adjustment to have some fiber with at least 1 meal.
as far as your question,,seeking a med i know,,I read once about hoof balm (yea for horses) lol I havnt tried it. perhaps if there is accompanying cracking areas. For this you mite want to get a baseline of your potassium level and see if it is correlates with the perianal symptoms.

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 1/9/2010 9:44 PM (GMT -7)   
My doctor wants me to go on Remicade for an abscess and fistula, but I don't have any other inflammation problems.
Apparently, the other drug I took as a kid does nothing to fistulas, and neither does Humira.
It's been really hard to accept that Remicade is my only option.
But I am going to take the Remicade because I don't want my fistula to get any worse to the point where stool starts to pass through it.
We'll see how I react to the Remicade and go from there.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
Remicade is coming to get me soon!


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 1/9/2010 10:51 PM (GMT -7)   
flagyl worked wonders for my perianal fistula.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 1/10/2010 11:23 AM (GMT -7)   
For me the rectal enemas hurt due to the extreme rectal inflammation and I frequently cannot hold them. However, they help. What I use most of the time is a compounded budesonide suppository (3mg) each night. They are still not comfy going in, but the discomfort is very quick to pass, unlike the enemas where I hate to lay with a heating pad and *no way" move in any way right after using them or I lose them. But the suppositories keep me stable. (I honestly don't think Cimzia's helping at all)

I took the CortEnemas for a while years ago and I still got all the steroid side effects - puffy cheeks, etc. With the budesonide, I can't even tell (in any bad way) that I'm on steroids daily. I have osteoporosis, so I hate to think of steroids. But, budesonide is metabolized more quickly than the other steroids and therefore does less harm and has fewer side effects. The compounded suppositories keep me sane!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09. Dx Osteoporosis 10/08 started Forteo 1/27/09


john deere driver
New Member


Date Joined Jan 2010
Total Posts : 1
   Posted 1/10/2010 12:12 PM (GMT -7)   
Hello guys i am new to this not sure if i am on the correct sight.
I had a ileostomy in 2007 i had it reversed 8 months later
i am looking for someone that has had this and now suffers
really bad diarrhoea i have tried everything to stop it
with quite a few stops in hospital i have found that dihydrocodeine
is the only thing that gets me back to something near normal.
This all came about through a bad car crash.

blueberrydecaf
Regular Member


Date Joined Jan 2010
Total Posts : 257
   Posted 1/10/2010 10:27 PM (GMT -7)   
hello - I have always had (increasing numbers) of anal skin tags and never even clued in that it could be related to my Crohn's. Is this always the case? I have never even mentioned it to my doctor... I often have some bleeding when I have a bowel movement but it doesn't seem to be hemrroids it seems to be just a bit of darker blood. Should I get it checked out if it doesn't bother me t
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