Crohn's Disease Forum » Your Story » Colitis to Crohn's


04-26-2010, 04:06 AM   #1
Chrismac
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Colitis to Crohn's

Hi,
I was diagnosed with Colitis 8 1/2 years ago now.. it was always a strange case and my doctor never quite worked out what was wrong. It was classed as 'Undiagnosed Colitis'.

One year ago I had a really bad flare up.. It took a long time to recover and was the worst I've had yet.. by far. The results of that were good and bad, the good being I discovered my doctor had retired and now owns a Distillery in Scotland.. This is good because I found that although he knew his stuff he was not really willing to embrace new things, kept within safe boundaries and had me on Pred for 6 years!

My new doctor is the head of Gastroenterology at my hospital and female.. which always helps for us girls. She talks me through everything.. instead of knocking me out completely for a colonoscopy she kept me awake and talked me through it all as I watched it on the screen, showed me what she saw.... I appreciate that.

To cut a long story short she took 24 biopsies from my colon and told me from all appearances it is most likely crohn's. It is only in my colon, hence all the confusion, although it has spread to three areas instead of just near my rectum.

So basically my whole way of doing things has to change. I'm realising how different Colitis and Crohn's are and how Crohn's takes much more management.... because I'm seeing how all these other things wrong with me are connected. Before now I just knew that somehow Crohn's was worse.

My whole diet has to change, I can't take ibuprofen, lack of appetite, tiredness... it all suddenly makes sense! So I'm trying to deal with this change still and work out everything that Crohn's entails.

So that's a very short story me.

Christine
04-26-2010, 04:20 AM   #2
Lisa
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Hi Christine - glad it sounds like you have a definitive diagnosis.....I too went through the 'Colitis' diagnosis, then the 'Chron's/Colitis' (both) - now it seems more like just Crohns........I too have a female GI doc - she is great! What part of the country (what country? lol) are you in?

Lisa
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04-26-2010, 04:40 AM   #3
Chrismac
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I know, I'm so grateful to have a female doctor.. It just makes things a bit more comfortable.

I should probably update my profile! I'm from England - a little town just north of London called Harpenden.
04-26-2010, 05:33 AM   #4
Astra
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Hi Christine
and welcome
great! another fellow Brit
Great that you've got a dx, not great you're a Chronie tho!
I think you'll find lots of info, support and advise on here, everyone is great and knowledgable. Have a read round the threads on diet and treatments.
glad you found us and any questions, just fire away, you're not alone.
also glad you're not using ibuprofen! a big no no for a Crohnie! I used it for an old neck injury, and it nearly killed me, no-one told me not to use it!
see you around the forum
lotsa luv
Joan xxx
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04-26-2010, 08:28 AM   #5
teeny5
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Welcome to the forum! My Crohn's is also only in the colon.
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04-26-2010, 10:39 AM   #6
Chrismac
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Thanks guys..

Yeah, I think my doctor assumed I knew a lot about Crohn's because I've known about Colitis for the last 7 years.. but I'm finding a lot of new stuff.

It's good to connect things up. Like the ibuprofen.. I don't remember ever being sick from it, but then if I got sick I wouldn't have put it down to the ibuprofen.

Good to know you guys are here..
04-26-2010, 05:25 PM   #7
phillycrohns
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Hi Christine:

I had a similar experience in terms of differing diagnosis. I was originally diagnosed with Crohn's, but my GI doc sometimes labels my disease as Crohn's and sometime Colitis (on various office forms). So I asked her about it, and she says she is not really sure which I have--that it is likely Crohn's/Colitis, which basically means that I have IBD of indeterminate nature. So who knows. Since Crohn's was my original diagnosis, I stick with that one until someone definitively tells me otherwise. Either way, IBD requires lots of care and attention.

Good luck with managing your disease!

Chris
04-26-2010, 06:25 PM   #8
Entchen
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Welcome!

Hurray for old farts retiring and taking up new jobs.
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Dx: Moderate Crohn's in 3 locations
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Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
04-26-2010, 06:42 PM   #9
ameslouise
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Hi Christine and welcome!

I'm also a Colitis first, then Crohn's DX. For 7 years my disease presented and felt like Colitis, but not I DEFINITELY have Crohn's and all the other stuff that comes a long with it. And yes, it is amazing how different the management of Crohn's is from UC.

Glad you finally have a DX and are happy with your doctor. What meds are you taking now? Hopefully you are off the pred after 6 years!

Tons of good info on here - I have learned so much and always have felt comfortable asking questions here. Really nice, kind people on this forum.

Take care of yourself! -Amy
04-27-2010, 08:30 AM   #10
Chrismac
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Thanks.. yeah I'm definitely still learning. And people around me are having to learn that this changes stuff and actually I have to work extra hard to look after myself!

Right now I'm on 150mg Azathioprine and 4.5g Balsalazide
2 Calcichew a day and 1 Iron tab..

It's holding me up, providing I remember to take it! The Balsala is the worst one because I have to take it 3 times a day. Nightmare! But there's another drug we're looking at trying, can't remember what, but I only have to take it in the mornings.

The iron makes me pretty nauseas and sick at the moment also, but hopefully once my energy is up then that can stop.

At the moment I feel like I'm anaemic but I've been taking iron for a while now and it doesn't seem to help!
04-27-2010, 09:58 PM   #11
PeninsulaLil
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Count me in the colitis-then-crohn's group. My original diagnosis was microscopic colitis and I managed with just asacol for flares for over 8 years. The original diagnosis was by sigmoidoscopy so they didn't really see the whole pattern (nor do I remember that they did any biopsies). So far the Crohn's is colon only.

And egads! is it different managing Crohn's! The folks on this site are really a great help--cheerleaders with medical knowledge!

Lilly
04-28-2010, 12:17 AM   #12
Entchen
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Chrismac, my family physician told me that some kinds of iron supplements are easier on the stomach than others. She recommended ferrous gluconate; however, another CF member said that ferrous gluconate can actually be really irritating to people with Crohn's. You might want to ask your family physician about trying a different kind of iron supplement. Good luck!
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