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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Fissure for 10 mos, undiagnosed IBD?



02-13-2016, 02:00 PM   #1
tahoechickadee
 
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Fissure for 10 mos, undiagnosed IBD?

Hi,

I'm new to this forum, been reading a lot of threads over the past few months and finally decided to join. I apologize if this is all over the place.

I've been suffering from an anal fissure since last May (2015), a change in BM (soft, smelly, never well-formed), and generally not feeling well. I've had 2 colonoscopies w/ biopsies. With GI Dr #1 it came back 'normal', but with proctitis (even tho biopsy was normal). GI Dr #2 colonoscopy came back normal, but with hemmys and an anal fissure. Pretty sure I had the fissure back for the 1st colonoscopy, but GI Dr #1 missed it. Hence getting another opinion from another GI. 2nd GI Dr sent me to Colorectal Dr, finally saw them in Sept/Oct of 2015, tried nitroglycerin for 3-4 mos, didn't work. Prior to that I tried sitz baths, hydrating well, high fiber, creams, to no avail. Changed my diet- tried the low residue, tried a variation of low FODMAP. I was told by my Colorectal Dr that if your fissure doesn't heal, it's b/c of 3 reasons: 1) colorectal cancer, 2) STD, or 3) IBD. Colonoscopy and other tests ruled out the first 2 issues. I'm convinced it's due to an IBD, but have not been diagnosed, and was told I don't even have IBS. I have pain in my abdomen which I was given an antispasmodic for that, and otherwise have the big D mixed w/ constipation (on occasion, it is mostly rare). The main thing I have noticed is that my BM are soft (milkshake like) and smell really bad, and this has been going on since May 2015. Worse then usual poo smell (poo smells, i get that) but this is beyond bad, it's nuclear.

What I don't understand is that my Colorectal Dr didn't bother to rule out the other 2 causes (STD or IBD) and was gunning for surgery. If IBD isn't ruled out, wouldn't you NOT want surgery? Esp if is is crohn's related? Botox was a suggestion but my insurance won't cover it. I would like to confirm if I actually have an IBD but that seems to be quite impossible, and don't want to have surgery until this is confirmed. Or should I just have the surgery?

Went to see a 3rd GI Dr at the Mayo Clinic in Scottsdale Jan of this year (2016). Had an MRI/MRE with contrast, showed nothing. Tested for Celiac disease (negative), and stool sample (parasites), showed nothing. Dr #3 suggested if things were still off, we could do the Pill Cam, and try the low FODMAP diet. Also, do a flex sig to see what is going on. Is this worthwhile? I want to give up but at the same time I know there is something going on with me. Also, i've noticed weird throbbing in my teeth, as well as throbbing in my eye balls, esp when i get stressed/overwhelmed. I had this back when all the fun started last May, but was on a bunch of different hydrocortisone suppositories, enemas, and creams and the 2nd GI Dr though my throbbing teeth/eyeballs was due to that medication. These pains have returned and i am not on anything, I rarely take the antispasmodic. I have also noticed weird joint pain in my hands (to the point where i can barely bend my finger it is so painful). This comes and goes. I'm a swimmer, so maybe it's from swimming...but have never noticed it previously in all my years of swimming.

Fissure-diet question: are there certain foods I should avoid b/c they are hard coming out the other end (ie. undigested)? Like nuts for example...?

Sorry this was rambling, and if should be in another forum location please let me know, I will re-post there.

Thank you for any thoughts/insights/advice you may have....
02-13-2016, 02:50 PM   #2
Absentminded
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I'm sorry that you're going through this and are still waiting for a definite diagnosis.

I thought that Proctitis is a type of IBD (a sub type of Ulcerative Colitis) it's inflammation of the rectum. My mum has UC, specifically proctitis.

Here's a link to a Crohn's and Colitis UK booklet, page 11 mentions Proctitis.

http://s3-eu-west-1.amazonaws.com/fi...ve-colitis.pdf


I hope you find some relief from the fissure soon.
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Lucinda x

Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
02-13-2016, 03:24 PM   #3
ronroush7
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I am sorry you srde going through this. Have you kept a food diary to see what might aggravate your symptoms?
02-13-2016, 04:21 PM   #4
tahoechickadee
 
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@Absentminded: thank you for the info/link! I also read that Proctitis is an IBD, but how can one GI say I have it, and the other 2 GI Drs say I don't? The 2nd/3rd GI drs seemed to think that since the biopsy came back normal from 1st colonoscopy, then proctitis was not present. The photos from 1st colnscpy did show uclers in rectum area tho, but maybe it was just from the prep, and from my previous D before the procedure....

@ronroush7: I've been keeping a food diary since last May. I went almost an entire month and it healed, then about 2 weeks ago the pain came back, then the blood this week. I think it may have been that my frequency increased (normally i go 1x daily, it increased to 3-4x a day). I also had a lot of nuts/trailmix, but otherwise was eating pretty clean- whole foods- fish, vegetables, rice, i cook my own meals. Maybe it was the trail mix and combo with increased frequency. I noticed the smell got worse too right around when the pain came back...interesting. Do you have a history of fissures? And what do you do when/if it comes back?
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