Advice needed - proctitis to inflammation in sigmoid colon

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VicM
New Member


Date Joined Jan 2017
Total Posts : 8
   Posted 12/5/2017 1:50 AM (GMT -7)   
Hi
Just hoping for a bit of advice. I was diagnosed with proctitis following a flexi sig in Jan 2016. Following a course of prednisolone and mesalamine this completely cleared up and I was symptom free for the best part of a year. By Jan 2017 I was under a lot of stress and on a trip to India I picked up a bit of a dodgy stomach and started noticing bleeding again. I quickly started to feel very poorly again (lots of bleeding, lower back pain, feeling very tired and generally just unwell). Went to the GP who tested for infections (which came back clear), referred me to gastroenterology and started me back on the mesalamine enemas.
By the time i went to the appointment the enemas were working well and I was feeling a lot better. They did a repeat flexi sig and everything came back normal. The GI said it was highly unlikely this is IBD because the biopsies were all clear.
So he sent me on my way with no treatment but within a month or so I was developing symptoms again and started feeling really unwell, with lots of back pain and passing a lot of blood. I also (and I don't know if this is related) developed psoriasis for the first time in my nails and scalp). The GP did another faecal calprotectin test and this came back quite high (over 700). She referred me back to GI and put me back on the enemas.
They referred me for a full colonoscopy. Again by the time they did the procedure the enemas were working and the symptoms had settled a bit and the bleeding had gone although I still wasn't feeling quite right. The scope showed that I now have patchy mild inflammation in my sigmoid colon. My rectum (where I had the initial inflammation a couple of years ago) was normal.
I am still waiting on the biopsy results but concerned what to make of all this. If the inflammation is not caused by IBD is that possible for the inflammation to move like that?? Can anyone offer any thoughts around this? Presumably i am just going to have to wait for the biopsy results. I am worried now that whatever is causing the inflammation it has spread. Thanks!
Diagnosed with proctitis in January 2016.
Treated unsuccessfully with steroid enemas, and then successfully with a course of prednisolone and mesalamine enemas.
Symptom free for 12 months but flare up since Jan 2017, using mesalamine enemas

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11046
   Posted 12/5/2017 6:59 AM (GMT -7)   
It's possible you have an infection lingering that came back. Infectious-proctitis is a possibility. Have they done a full serious of stool tests to rule out pathogenic causes to your symptoms? There's infections like clostridium difficile (C diff) that can cause a lot of troubling bowel symptoms as well.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

U.C. = Unimaginable Crapnado

VicM
New Member


Date Joined Jan 2017
Total Posts : 8
   Posted 12/5/2017 12:52 PM (GMT -7)   
Hi thanks for the reply. I had stool tests done back in January and they all came back clear. However the gastroenterologist I saw who sent me for the colonoscopy said he didn't think it was worth doing more - he said if it was caused by an infection that they generally wouldn't treat bowel infections as they are mostly self-limiting (unless it was c-diff)?? If it is an infection it doesn't seem to be that self limiting as it keeps on coming back! think if the biopsies come back clear then its possibly worth trying to push for more stool tests?? It would be good if they could actually work out what it is and treat it. Thanks for your reply anyway, think I'll just have to wait for the biopsy results and take it from there.
Diagnosed with proctitis in January 2016.
Treated unsuccessfully with steroid enemas, and then successfully with a course of prednisolone and mesalamine enemas.
Symptom free for 12 months but flare up since Jan 2017, using mesalamine enemas

countess18
Regular Member


Date Joined May 2016
Total Posts : 119
   Posted 12/6/2017 11:14 AM (GMT -7)   
vic

Your story is very interesting. I was diagnosed with proctitis under 2 years ago and treated with mesalamine enemas last year. I did well on the enemas but had similar healing to yours. The initial lower part healed but then I had patchy healing up further. My doc was not sure if it was due to partial treatment from the Rowasa enemas. They really work well for topical healing/ my healed areas also show normal biopsies afterward which I find interesting. My doc thinks I have Crohns now due to the patchiness and how the healing was not uniformed. My last scope showed healed all the way up the left side but with some ulcers in the transverse colon ( which was new this year). You are waiting for the biopsies on the patchy mild inflammation.. probably will show something although mild. Continue with the enemas!!!!

Its possible that you had partial healing from the enemas. I think you have a form of IBD and you need to continue the enemas and probably add an oral mesalamine. I don't think you have C diff!! I don't know why my biopsies are normal when I heal but I can tell you that I have either Crohns or UC- it never goes away.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis left side - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, prednisone taper 5mg per week, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 2242
   Posted 12/6/2017 2:15 PM (GMT -7)   
I am surprised that you were not cautioned of Sigmoid/Left sided UC at the time of proctitis diagnosis. When I was diagnosed with proctitis, the GI warned me, within a year or two, you are going to get UC, hopefully, it will stick to the sigmoid region only if you are religious with the drugs, and thats exactly what happened. Late 2008 Proctitis, mid 2009 UC.

I doubt, it has anything to do with your India trip but certainly related to the stress. I was also under tremendous stress during this period.

If I have to do all this over, I would say, get the inflammation down, by hook or by crook but once you are settled, study religiously the kind of diet you are eating, research gut flora, reduce your stress, include soluble fibers and then insoluble fibers in your diet. Make sure that the fiber in your diet increases significantly (during remission).
Also, go through the old posts and literally make a list of what benefits people. There is so much individual variation in this business that nobody can make a concrete statement, trial and error is the only way.
Dx 03/2007, left sided UC. Currently in remission
Sulfasalazine 1.5gm 4X a day, Vit. B12, 1mg, 1 tablet, Fish oil 2400mg , Butyrate 2-3 caps, Vit D 5000 IU, Benebiotics 2caps, Mesalamine Enema,

Verapamil 320mg for migraine, Nabumetone 750mg as an abortive
uBiome discount 15% off any kit http://bit.ly/1xYWjbG

VicM
New Member


Date Joined Jan 2017
Total Posts : 8
   Posted 12/7/2017 1:07 PM (GMT -7)   
Hi both
Thanks so much for the advice. T - it sounds like we have had fairly similar experiences. The GI was unsure whether I should still use the enemas until the biopsies are back but I feel like they are helping and so I'm keeping on using them. When I don't use them my symptoms start getting much worse and so I think it makes sense to still use them.
The consultant I saw when I first had proctitis (he was a colorectal surgeon not a GI) told me that it might never come back, or that it might come back repeatedly. He just said that if it came back I would need to be referred back.
I'm worried really that it's spread as it was definitely just in the rectum the first time round and now it's further up. Would just be nice to get a proper diagnosis of what it is and how to treat it. If it's caused by infection then it would be good to know this (even if it's something they can't treat). If it is IBD then I'm worried that it's not being treated enough and it'll just get worse. Will see what the biopsies and gastroenterologist come back with!
Thanks for both of your advice!
Diagnosed with proctitis in January 2016.
Treated unsuccessfully with steroid enemas, and then successfully with a course of prednisolone and mesalamine enemas.
Symptom free for 12 months but flare up since Jan 2017, using mesalamine enemas
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