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Crohn's Disease
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Posted 7/18/2018 11:58 PM (GMT 0)
Hey, trying to keep a sense of humor about all this...

But seriously, just went to the toilet and saw something I've never seen before: a blood clot on the toilet paper. Not a big one, but definitely there. Blood on the toilet paper isn't unusual for me (I have a tendency to get fissures and well, wipe too hard), but this is. Didn't see any blood in the bowl or in the stool.

I've been having abdominal pain when I go to the bathroom lately, though it passes quickly--and that could be gas, since I tend to be gassy in the can. I did have a lot of abdominal cramping on Monday, but it was gone by Tuesday morning. Other than the blood today, everything else is fine--I feel good, my BMs have been normal, and no pain outside of the bathroom.

Right now I'm still plunking away with the Pentasa, though I've missed a few doses here and there over last week. The doc is still considering Imuran, though I'm holding out for a short course of steroids--Imuran scares the hell out of me. My blood test results showed mild inflammation only.

Since my GI doc is on vacation this week and only communicates via e-mail (and then through his nurse), I'm kind of on my own here for a little while. Not sure if I should run screaming to the ER or just tough it out and see if it clears up. Advice?

EDIT: My GI doc is evidently checking his e-mail on vacation--he said to up my Pentasa to 4xday (I was just taking it 3xday). Still wouldn't mind some advice on when to run for the ER.

Post Edited (holo100) : 7/18/2018 6:01:49 PM (GMT-6)

Posted 7/19/2018 12:16 AM (GMT 0)
Your blood test (CRP) showed mild inflammation, but your colonoscopy showed significant inflammation (didn't it? Can you repost the colonoscopy findings?).

The colonoscopy results trump the blood test results every single time.

Pentasa is not appropriate. I would even go so far as to say that imuran might not be appropriate. More and more GIs are starting people on biologics when moderate to severe disease is seen on the scope.

Where are you located? You need to find a GI who understands how to treat Crohn's. I hate to scare you too much, but while you're wasting time with Pentasa, permanent damage can be occurring in your colon.

Post Edited (beave) : 7/18/2018 6:19:07 PM (GMT-6)

Posted 7/19/2018 12:27 AM (GMT 0)
Did you finally get a copy of the biopsy. You had mentioned in the UC forum you had an appt I believe yesterday & would be getting a copy of the report then. I know you were having some issues with the facility.

Beave is right, if you fall in the moderate to severe range, Pentasa is not the way to go. Imuran can take 3 months to kick in & wouldn't be a good stand alone medication in your situation. Not bad mouthing your dr, but he/she is behind times on how to treat.
Posted 7/19/2018 1:24 AM (GMT 0)
Beave, I live in Montana. There is no dedicated Crohn's doctor within 200 miles of me, if that. As it is, the GI doctor I see now is 90 miles away, and there is no one else. If I move to where the Crohn's doctors are, I lose my job and my insurance. (You'd think that in a small city of 50,000 people we'd have at least one decent GI doctor. We don't. Award-winning heart surgery hospital, superb cancer center...no GI doctors worth the title.)

The hospital is dragging its feet when it comes to releasing my records--you'd think they were nuclear launch codes. The smart thing would be to just post it on the patient portal, like the blood test, but they're sending them through the mail. So maybe next week...I'll post it when I do.

The guy I see now has a great reputation, and he really has been trying to work with me, but I think he's overworked. I also get the feeling that he may be in over his head with Crohn's as he usually treats UC. I pretty much have to work through this guy and my primary doctor; luckily, I have a darn good primary.

If it gets worse, I'll ask for steroids from my primary and probably get them. That's the most I can do. No way in hell they're going to approve biologics at this stage, especially since my insurance company won't touch a biologic until we've tried steroids or Imuran.
Posted 7/19/2018 1:34 AM (GMT 0)
I remember reading of your difficulties getting your biopsy report (I've dealt with similar nonsense - once I ultimately went to the hospital records department, got the copies I wanted there - then later got a bill for them mailing them to me! Uhm, I should have been billing them for my travels!)

But I thought you'd already seen or had the scope report.

Good luck dealing with the madness of hospital records.

As for steroids, they can work fast in making one feel better, but they're not so effective at actually healing the damaged bowel, and they're not a long term solution.

Insurance companies are another fun part of having this disease. They might be more open to approving a biologic up front if the doctor presents solid evidence of significant disease. You've already been in the hospital, right?
Posted 7/19/2018 2:26 AM (GMT 0)
For acute colitis. Not for this. All I had last time was fever, vomiting and nausea. Until they ran the CT scan, they figured it was pancreatitis or a second round of gastroentritis. No blood, no diarrhea. They pumped me full of flagyl and I was good to go.

I have to at least give my doctor the benefit of the doubt. He's the one with 15 years of experience, and he's seen the biopsy reports, and he was the one with the camera up my rear. He knows what he saw. Gad, I have to trust someone. At this point, I don't have much of a choice.
Posted 7/19/2018 2:59 AM (GMT 0)
But what do you mean by 'acute colitis,' given that you now have a diagnosis of IBD? Are you saying it was infectious in etiology? It appears to me that it was likely a flare up of your IBD, but I could be wrong.
Posted 7/19/2018 4:47 AM (GMT 0)
Beave, if you don't mind me asking, are you a doctor? Not trying to be nasty; genuinely curious.

As for the acute colitis back in January, I have no idea. My history is this: I didn't have any symptoms before June 2016. I started getting the blood and diarrhea after a two-week course of clindamycin, which made everyone think it was c-diff. The colonoscopy taken in June 2016 showed evidence of ulcerative colitis, specifically proctitis. A flex sig done a few weeks later showed the ulcerations to be healing, without medication. At first, the GI doctor I was working with at the time said it was UC, but after my symptoms disappeared, he revised that to say "non c-diff antibiotic caused colitis." I went for a second opinion with my current GI doctor, and he also believed it had resolved spontaneously and probably had nothing to worry about. (I should note that I never had the huge amounts of BMs associated with UC or c-diff. The most I had was four in one 24 hour period...and that was because I'd eaten at McDonalds. Chicken nuggets, man.)

I was symptom free until I got horrific gastroentritis in early January of this year (which was definitely bacterial, as it was going around my workplace). I recovered from that, felt great for a week, then ended up in the hospital when I couldn't keep anything down, not even water. They initially thought it was pancreatitis, but revised that to acute colitis after a CT scan. Three days and about ten bags of flagyl later, they sent me home.

Again, felt great until mid-March, when I started getting weird bouts of random nausea and then a small amount of blood in the stool...for one day. I went to urgent care, and that's when they found the inflammation through a blood test. Contacted the GI doctor, saw him three months later, then colonoscopy a month after that. During that waiting period, I had occasional blood, about once a week on average. After the colonoscopy and starting Pentasa, I had no symptoms until last Thursday, when I spotted some blood, and today. Also after the colonoscopy, the GI doctor said "Ulcerative colitis throughout the colon" and didn't revise it to Crohn's until he got the biopsies two weeks ago--hence the Pentasa prescription.

Interestingly enough, I have a good friend (who has the fortune to live in Atlanta!) who was diagnosed with Crohn's back in December 2017 after he got an intestinal blockage and ended up in the hospital for four days. He's on Apriso, and he's doing great. I haven't talked to anyone about Apriso yet, but I understand it's similar to Pentasa.
Posted 7/19/2018 5:28 AM (GMT 0)
I think I already asked this (and I think the answer was no?), but did your doctor order any imaging tests for your small intestine? By that I mean a CT scan or MRI with oral contrast, or possibly a capsule endoscopy? Given your new Crohn's diagnosis and your nausea, it would be appropriate to do so.

As for the gastroenteritis in January, did you have stool tests done to confirm it was bacterial? Things that 'go around a workplace' are usually viral. Bacterial usually comes from a food source that has been tainted and will show up in stool cultures.

As for your friend in Atlanta, yes, Apriso is also a mesalamine like Pentasa, just formulated a little differently so that it releases only in the colon and so that you don't have to take so many pills per day. Like all mesalamines, it's frequently prescribed by GIs for Crohn's treatment despite it never having FDA approval for such (while it does have approval for treatment of mild to moderate UC, it never had approval for Crohn's treatment of any severity). Studies over the past 10-15 years have made it pretty clear that mesalamines are not beneficial in Crohn's treatment, but GI's are slow to change their behaviors. A recent survery showed something like 80-90% of GIs still prescribe mesalamines for Crohn's despite the evidence showing they don't help.

As for me, no, I'm not a doctor, but I'm fortunate to 'know' a few top researchers and clinicians in the field, and I've been going to IBD medical conferences for about 15 years due to those connections.
Posted 7/19/2018 5:41 AM (GMT 0)
I misspoke--it was viral, not bacterial.
Posted 7/19/2018 5:43 AM (GMT 0)
No problem, I kinda thought that might be the case. I too had a wicked case of viral gastroenteritis in January of this year. It lasted exactly 24 hours but left me weak for a few days after. I wouldn't wish that on my worst enemy!
Posted 7/19/2018 5:56 AM (GMT 0)
Beave, one other thing, and I don't mean this insultingly. You're talking about steps that until I see your posts, I had no idea was even a thing. I was diagnosed with Crohn's two weeks ago, and both my doctor and I are still trying to figure out a treatment plan. We're on step three, and you're talking about step 58.

I can't go to any other doctor. I can't up and fly to Seattle or Atlanta or somewhere else there's specialized Crohn's doctors. I live in an area where there's three GI doctors for almost 100,000 people spread out over probably a thousand or more square miles. Unlike the other two GI doctors I've dealt with, this guy at least listens to me, doesn't fob me off on some half-qualified PA, and is willing to work with me on prescription costs. Maybe he's wrong, maybe he isn't, but I have to trust someone.

I know you are trying to help me, and I really do appreciate it. But right now, I feel overwhelmed.
Posted 7/19/2018 5:59 AM (GMT 0)
Understandable to be overwhelmed by it all in the beginning. But keep reading and asking questions and demanding copies of your test results, and pretty soon you'll be more comfortable with it all.
Posted 7/19/2018 1:17 PM (GMT 0)
Holo, one of the best places to read & learn about crohns & medications used is the CCFA.org site. The information there is accurate & reliable. There is too much garbage on the internet.
Posted 7/19/2018 6:55 PM (GMT 0)
Yeah, I've been doing that.
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