Crohn's colitis/colonic Crohn's

[nitty]

Hello!

Does anyone out there have Crohn's that only affects their colon? I'm pretty sure this is what I have, although I want to confirm this next time I see my consultant. From what I have been told, I'm mainly affected at the rectum, with a couple of small patches further round (ascending and transverse colon). This is what changed the diagnosis from UC to CD after colonoscopy. My symptoms are more typical of UC.

If anyone else has this, what medicines do you take? Is it any different to what's given for more spread out disease?

How can they tell if there is/isn't disease in the small bowel if the colonoscopy only goes as far as the terminal ileum? Is that mainly symptom-based diagnosis?

I'm new to this, so I'd love to hear from anyone else in the same situation.

Nitty XXX

 

[lookame]

Hi there! I'm a colonic crohns patientee. I have all symptoms linked to UC in fact it's been discussed that it visually comes across as UC...the only thing that says it's crohns are my biopsies and seerology 7 bloodwork.

Anyway I am on 50 mgs of 6mp, 4 pills of lialda, prednisone(cause I can't get it calmed down) starting remicade and iron and mutlivitamin.

Oh at the time of my diagnosis it was severe crohns disease affecting my colon(it built up the same way UC does from the descending colon to transverse to ascending colon with the most severe being in my descending colon) it has since been redone at my last sigmoidoscopy and my condition is now moderate crohns

 

[nitty]

Hi! Nice to meet you!

Thankfully my condition is only mild (hope it stays that way) and I'm currently on mesalazine (4g Pentasa orally and 500mg supp.s per day). I'm trying to find out whether I might be better on Asacol tablets, which release a bit later in the gut than Pentasa. I don't know about lialda, whether it is the US equivalent to Pentasa or Asacol.

It's possible I've been put on Pentasa in order to protect my small bowel in the future, but as I'm still getting slight bleeding I'm not sure whether to try a version of mesalazine more targetted at the colon. I'd love to stop the suppositories, but I scared of getting worse again if I do.

 

[lookame]

Lialda is also mesalazine. It actually doen't help me at all. When I start remicade I should be coming off it. I haven't done suppositories since my disease is so bad and throughout my entire colon, we discussed it and we would have tried them if my sigmoidoscopy showed I was in better shape but since I still have moderate inflammation he said we'd be better off with remicade. I still have blood everyday, every stool though the pills have helped a decent amount and I'm not running to the bathroom every 5 minutes and it's not diarreah.

 

[suschex]

I was dx'd 13 weeks ago with severe pancolonic Crohn's Disease.

I was put on 40mg Prednisone right away and then Humira 8 weeks ago.

I'm glad lookame answered you...at this point I am still trying to sort it all out and doubt I am much help to you. But, I wanted to at least say "hello" to another colon-only crohnie!

If you find more info on the disease when it is confined to the colon I would love to hear it!!! I have not found much out there yet. Would love to know the stats on spreading to other areas of the GI!

I am so happy for you that your CD is mild and hope you are feeling well soon!!!

Suzanne

 

[nitty]

Hello Suschex!

Sounds like we got our diagnosis around the same time. I hope you manage to get on top of it soon.
I know I am very lucky that my condition has responded to the lower levels of medication and, although I have blood and slight urgency most days, it's perfectly live-able with. I suppose I'd like to know whether this is as good as it gets, or whether I should expect to ever get back to my 'normal'. To be honest, as long as it doesn't get worse again I'll be happy.
I think I'm still coming down from the high I got on discovering that I wasn't facing an aggressive bowel cancer, but now coming to terms with the fact that I do have a lifelong condition that needs me to really take care of myself from now on. One of those mid-life wake-up calls that come to so many!

 

[Lisa]

I was initially diagnosed with UC....then changed to Crohns-UC...doctors' couldn't decide....then finally with Crohns (especially once it started to fistulize!)....

And yes, my involvement has been in the large intestine.....

 

[mnsun]

If you think it may be in the small bowel, the only ways I know of monitoring/diagnosing are pill camera(aka:wireless endoscopy) or a barium follow-through. Yes, to me it sounds like a symptoms based diagnosis. Maybe the docs are ruling it out based on lower/non-existent levels of inflammation markers in blood tests.

Neither of these are 100% accurate. I think the wireless endo is best, as it's less taxing on your body (no continuous xrays or glasses full of barium--the worst experience I've had). Though if you opt for the pill cam, insist on a dummy pill which would dissolve if their were unforeseen strictures. If it would get stuck, an xray would show where the stricture is and the dummy pill would dissolve. My pill cam was $2600 before insurance. I'd assume the barium follow-through is more expensive.

 

[nitty]

Thanks mnsun.

I have not had any bloods taken for inflammatory markers as the consultant felt my case was not bad enough to register any significant levels. He said that if I developed any new symptoms different to what I'd already had, or if things worsened again, they would look at them then. I am happy with that as I responded so quickly to treatment and have not been particularly unwell with it.

Thankfully, being in the UK, if I do need further investigations then there's no issue with cost. Our family, via tax, will have already paid for any treatment umpteen times over!! (To which I have no objection, I hasten to add!)