Usually in the crohns forum now I'm confused

Hey guys.

So you can usually find me in the crohns forum, digging and snooping around there (Get it? Snooping around? cause pooh smells? Lol) but lately the more I've been reading up and digging deep sometimes I think could it be UC?

Little back round history. Around 09 major constipation so bad at a point I didn't go the toilet for around 7 days and I didn't even notice, woke up in the middle of the night felt like my stomach was ripping apart one night, went to emergency, did an Xray at the hospital nurse told me I was full of crap!! Legit. Those exact words.

Went to my GP, referred me to a GI did a scope, woke up from colonoscopy basically told me I had crohns and needed to be meds my whole life. Pentasa 2G daily and suppository when needed. At that time my main symptom was blood in my stool and maybe loose stools at times.
Scope showed inflammation in colon and TI but all scopes after that have been constant in rectum and colon, Crohns/coloitis.

Main symptom to this day is blood in my stool and im still on Pentasa but at times I do use Salofalk enemas, colifoam and I've only ever been on prednisone once for about 2 months. even the first time I went to the hospital cause of major constipation all the nurse did was insert something into my rectum and i went to have a baby in the bathroom and i was on my Mary way, but after that I didn't notice blood in my BM.

KNOCK ON WOOD! My coloitis (my GI calls it) has always been classified as mild never develop a fistula, never been hospitalized, no strictures. Nothing. Thank God.

So when I try to tell my gi could I have UC he shrugs it off, says 100% its crohns.

Is there any test that can be done to determine weather someone has crohns or uc?

I know with UC it's always constant through out and where with crohns it has patches and yes I've had patches of inflammation.

I'm so confused at time.

My son had the Prometheus test a few months ago. Came back as UC, not Crohns (GI thought it was Crohns). The validity of the test is debatable. Some swear by it, others not so much. I certainly think it's a piece to the puzzle, but you have look at everything. I'm more and more convinced my son has UC or if it's Crohns, it confined for now to the colon (Crohns colitis). That could be the case for you if it's Crohns. Many of the treatments are the same anyway so it's more important, in my opinion, to find a treatment that works than worry about classifying indeterminate colitis.

Oh, the Prometheus test is expensive and some insurance companies won't cover it so you might want to check on that first.

if the character of the biopsies of inflammed areas showed the ulceration going deeper into the tissue it is more likely CD, if the ulceration was only in the initial layers of the mucosal wall, it is more likely UC

Meds are mostly the same. You want earlier release if you ever get small intestine ulcers. Otherwise same delayed release mesalamines.

IF MAP vaccine proves out for CD, but not UC, it could matter more than - but right now it only mostly matters is surgery is considered.

Ask your doctor this one simple question: If he is so sure it's Crohn's colitis, why is he treating you with medications approved for ulcerative colitis but never approved for Crohn's?

Sounds like you need to find a new GI.

Quincy - no the last scope i had only showed 4cm of inflammation in my rectum but the previous one had about 20cm from rectum to sigmind colon so not the entire colon is effected, its parts.

Beave, I'm not sure you're giving the OP solid advice. My cousin has Crohn's, is prescribed pentasa (mesalamine) and it has worked very well to keep him in remission for years. I also use mesalamines for maintenance and it is questionable whether or not I have UC or Crohn's Colitis. I have been told by more than 1 GI (one of whon I trust implicitly) that the treatment is the same for both. Granted some people with Crohn's need different/stronger meds than mesalamines, but this may not be the case for the OP.

The dx really only makes a difference if surgery becomes a discussion.

RockerGirl said...
Beave, I'm not sure you're giving the OP solid advice. My cousin has Crohn's, is prescribed pentasa (mesalamine) and it has worked very well to keep him in remission for years. I also use mesalamines for maintenance and it is questionable whether or not I have UC or Crohn's Colitis. I have been told by more than 1 GI (one of whon I trust implicitly) that the treatment is the same for both. Granted some people with Crohn's need different/stronger meds than mesalamines, but this may not be the case for the OP.

The dx really only makes a difference if surgery becomes a discussion.

How do you know that the Pentasa "has worked very well to keep him in remission for years?" For all we know, he might have been in remission for those years even if he weren't taking Pentasa. I take nothing for my Crohn's and have had multiple periods of years with remission.

I've linked to the research of Crohn's and mesalamines countless times on the Crohn's forum. Search my posts if you want to find more. Studies are clear - it's no better than placebo. The people with Crohn's who do well just on mesalamines likely would do just as well on nothing.

Now, for your case of indeterminate colitis, there may be benefit. That's a different situation. But your GI saying the treatment is the same for both is wrong. Mesalamines were only approved for UC, not for Crohn's. Doctors who prescribe them for Crohn's are prescribing them "off-label."

Beave. When I recieve my pentasa box, there's a leaflet inside and it tells you how to use the medication, what's in the medication and what's it prescribed for and it clearly says Crohns and ulcerative coloitis.

http://www.cochrane.org/CD008870/IBD_aminosalicylates-treatment-active-crohns-disease

https://en.wikipedia.org/wiki/Management_of_Crohn's_disease

"5-ASA compounds, such as mesalazine and sulfasalazine, have shown to be of very little efficacy in the treatment of Crohn's disease, either for induction or for maintenance of remission. Current guidelines do not advise the use of 5-ASA compounds in Crohn's disease."

Hopefully you noticed
1) that the wiki link I gave wasn't the only link I gave
2) that the wiki link has citations to original sources
3) that the wiki link and the sources it cites are consistent with the other links I provided.

Would you like me to Google it for you and find more?

Have your "renowned" doctors published their research showing 6G and 8G of Pentasa is more effective? I'd love to see that.

Do they have any evidence for their recommndation of arsenic suppositories?

And for doctors so renowned, I'm quite surprised they are recommending prednisone. The rest of the world's GIs do their best to avoid prednisone.

Can you give me a link to the practice you visit and/or the doctors names?

I know at the conferences I attend that there have been doctors there from Australia. Something doesn't add up.

Post Edited (beave) : 2/14/2017 1:55:33 AM (GMT-7)

whatdoigotDOC! i am from Australia and i think have the same GI, had a few actually and they can't agree what I have UC or crohns. I am on salofalk as I found it works better than pentasa but even with max dose still bleeding. CDD is great when you have a straight forward problem like Cdiff or infectious colitis but for people like me they don't have the answer. I've done FMT there - did nothing for me, so the only solution they have is salofalk. So if you find something that works please share, because communication with CDD isn't easy and productive (at least for me)

I see Borody but looking for an alternative since salofalk doesn't put me in remission anymore