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Anyone had any success getting Proctitis/fissure combo under control?
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Ulcerative Colitis
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Da-bomberative Coolitis
New Member
Joined : Nov 2019
Posts : 4
Posted 1/2/2020 5:17 AM (GMT 0)
So this last year after switching to a new GI, I managed to get my left-sided Ulcerative Colitis FINALLY under control for the first time with the addition of Mesalamine enemas and suppositories to the oral Mesalamine I've always been taking, but I still have an issue with Proctitis which is still tormenting me to no end. I also have a fissure I've had on and off for years that for the last year I've not been able to heal for more than a few weeks at a time because my Proctitis has never really gotten under control (even less so in the last year).
I've been applying Nitroglycerin to my rectum and Calmoseptine externally twice a day, which occasionally appears to relieve my symptoms somewhat, only for them to come roaring back with no apparent rhyme or reason. And I can never quite tell what's acting up, the fissure or the Proctitis. I haven't had a BM without SOME kind of pain in over a year. Sometimes I just feel irritation, throbbing and a burning sensation and other times its like I'm literally crapting glass. Overall the pain varies from feeling extreme burning, irritation and swelling of my anus, to only feeling a burning sensation mostly inside when I'm applying the nitroglycerin to my rectum.
Luckily taking a stool softener every morning keeps my stools loose enough to be able to pass them without putting too much strain on my anus. I'm one of the UC'ers who gets constipation instead of diarrhea (hence how the fissure originally occurred back around when I was originally diagnosed 4 years ago). If I were passing solid stools I would be in a LOT more pain.
I just can't make heads or tails of what exactly is happening down there and why nothing I've done to treat my Colitis is helping at all with my Proctitis.
Has anyone had any luck treating Proctitis as its own issue after getting their Colitis under control? Does diet affect Proctitis similar to the way it affects Colitis? I avoid some of the normal things, like wheat, dairy, soy, corn, most sugar, which seems to help with the Colitis (and I take a bevy of supplements), but could there be something I haven't cut out (like rice) that could be aggravating my Proctitis separate from what would affect my Colitis? Does it even work that way?
Just a little at the end of my rope and would be grateful to hear about
anyone's experience with this particular scenario. Much obliged!
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 1/2/2020 4:33 PM (GMT 0)
Sorry to hear you are struggling so. I cannot offer a lot of assistance with fissures, as I have not yet had that experience. I know others here have had fissures and might have better advice than me on it.
To clarify one thing, Ulcerative Colitis is what you have as a diagnosis. Procititis is the extent of your UC and means rectal-only inflammation (other terms are proctosigmoiditis for rectum plus sigmoid inflammation, and pancolitis means whole large intestinal inflammation). So, your UC and Proctitis are one in the same.
There's no clear answer on UC and diet. I have tried many but not had any success with my UC proctosimoiditis. Certainly do experiment and see if you can find a solution that works for yours.
paduk
Regular Member
Joined : Oct 2018
Posts : 74
Posted 1/2/2020 9:08 PM (GMT 0)
I have dealt with an anal fissure in the past.
After almost two years of using Diltiazem on and off with very very little results I was given a gel containing these (I am not writing the product name as I am not sure this is allowed):
GLYCERIN, PRUNUS AMYGDALUS DULCIS OIL,PHENYL TRIMETHICONE, BORAGO OFFICINALIS SEED OIL, MALVA SYLVESTRIS EXTRACT, PANTHENOL, DEXTRIN, HYDROLYZED HIBISCUS ESCULENTUS EXTRACT etc...
This gel helped a lot more and got me rid of the fissure.
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 1/2/2020 9:38 PM (GMT 0)
Product name is fine. Just no links to sites selling it (if over-the-counter)
Da-bomberative Coolitis
New Member
Joined : Nov 2019
Posts : 4
Posted 1/2/2020 11:51 PM (GMT 0)
iPoop, thank you, that was helpful clarification. So, ok, yes, I have Distal UC. And for whatever reason my treatment appears to be able to suppress symptoms everywhere but my rectum. Is that a thing that can happen or would it be more likely that I'm misreading fissure symptoms? These are all questions I'm asking my GI in a few weeks, but was just curious what the community might have to say.
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 1/2/2020 11:57 PM (GMT 0)
The rectum is often our most stubborn inflammation to treat. Inflammation always first appears within the rectum, and last heals within the rectum.
Hard to say if it's rectal inflammation, the fissure, or a combination of the two causing your troubles.
Da-bomberative Coolitis
New Member
Joined : Nov 2019
Posts : 4
Posted 1/2/2020 11:57 PM (GMT 0)
paduk, Thank you, yes would love to know what the gel is! I was also on Diltiazem for a bit before being switched to the Nitroglycerin. I'm worried my GI's next suggestion is going to be surgery, so would love to be able make mention of the option if my GI doesn't.
paduk
Regular Member
Joined : Oct 2018
Posts : 74
Posted 1/3/2020 2:23 PM (GMT 0)
The product is called Levorag, here is a link to a study they did to assess efficacy: https://www.ncbi.nlm.nih.gov/pubmed/25772685
Not sure they sell it in the US though, I have tried to find some information but no luck.
Alternatively you can look for Proctis-m or Cicatridina: I have not used them but many people on other (European) forums swear by them.
I need to add that my anal fissure was bad (A LOT of blood) but not extremely painful.
Hope this helps and good luck.
Fletch10
Regular Member
Joined : Feb 2017
Posts : 276
Posted 1/23/2020 2:31 AM (GMT 0)
I have many of the same issues and also have disease that presents with constipation. There’s an amazing product called Fissure Control Oil that I discovered about
a year ago - between that and adding a bidet toilet seat, my chronic fissures are finally under control. Unfortunately I’m flaring on Entyvio, so not sure what’s next for treating my UC, but applying that topically, morning and night, really helps!
MajorRad
Regular Member
Joined : Mar 2015
Posts : 32
Posted 1/24/2020 2:18 AM (GMT 0)
Currently dealing with same issue. Giving rectal tacrolimus ointment a try. It comes from compounding pharmacy. Currently on day 5 so too soon to tell if it is working (in studies they measured results at 4 and 8 weeks).
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