UC diagnosis?

[Mark in Seattle]

Hi,

I've had Crohn's in my terminal ileum for about 30 years, and have had a couple of surgeries for it. Recently however I've developed pain in my lower left side which has persisted for about 6 months. I had an MRI enterography followed by a colonoscopy. Neither of them showed anything. My GI was able to run the colonoscopy 3-4 feet up into my small bowel.

So given that this left-sided pain is relatively new to me I just thought I'd ask you UC'ers....how likely do you think it is that I've developed UC in addition to CD, and that it wasn't picked up on either the MRI or colonoscopy? Otherwise I'm guessing that the pain is coming from higher than 3-4 feet up in my small intestine.

Also, I've been on pred for about 10 months, which keeps the pain to a bearable level, but it's not reducing the pain. In the absence of a visualization of any lesions or swelling, etc., would it make sense to try a biologic, say Humira, to see if it helps? This would be kind of an empirical treatment attempt. It doesn't seem like the most rigorous approach, but on the other hand I think the only other approaches are to submit to a double-balloon endoscopy which takes several hours and runs the risk of pancreatitis and requires general anaesthesia, or to try a pill endoscopy, but my GI says it will get stuck in the stricture at the end of my ileum, so that approach would have its risks as well.

I'd like to hear from you all - I don't know whether UC is always highly visible upon endoscopy or is it conceivable that a skilled GI could miss it if it is flaring at a microscopic level?

I hope this isn't too crazy of a line of inquiry, but I struggle with this matter every day trying to decide how to proceed. I know I need to do something because pain like this left unchecked eventually leads to bad things, thanks!

 

[Keepingfaith]

You can have Crohn's affecting your entire colon. Crohn's IleoColitis is actually the second most common form of Crohn's. I have Crohn's affecting my whole colon, ileum, mouth, stomach, & esophogus.

It is also very possible that your Crohn's has spread to your colon. If you had Crohn's affecting your colon, there will probably be patchy inflammation. Your colon may not look as inflamed as someone with UC because UC only affects the two outermost layer of the colon. Crohn's can affect all layers of the colon. The inflammation may not 'look deep' but trust me, it can be so deep you get a fistula connecting your small intestine AND large intestine. Biopsies would show definitively if you have Crohn's Colitis.

I have only heard of one person having UC & Crohn's but I've been told by multiple doctors that UC & Crohn's is not possible to coinside with a patient. UC is curable through surgery. Crohn's is not curable by any means.

Take care!

 

[Mark in Seattle]

Thanks for that perspective Keepingfaith.

Can you tell me about your drug induced lupus experience that I note on your signature? Is that something that went away upon discontinuing Remicade? Any problem with Humira, or any benefit for that matter?

Also, how do you take sulfasalazine, and does it help? I took Azulfadine pills as a kid, but don't recall much about that med. I'm guessing it's the same thing.

 

[Keepingfaith]

I honestly haven't been on the Sulfasalazine long enough to tell you if it's working(it takes up to 6 months to kick in).

My disease is nonresponsive tp 90% of the medications because I build up antibodies way too quickly & I can't digest most pills so don't discouraged about what I'm about to say! :

I went on Remicade after being in the hospital for a month to try to control my current flare. After my first dose I noticed some joint aches. I didn't think much of it because I have JRA. Then as I continued with the doses I noticed that my hands/feet were turning purple from poor circulation. Some parts of my body would be red, hot and inflamed while others were blue, cold and clammy. I got the beautiful butterfly rash that still comes to this day. Every time I tried to get up from sitting down, my body forze. I could not move. One side of my face would droop. I could not speak. I could hear perfectly but I could not communicate whatso ever for about 3 minutes. Then my body would slowly gain the ability to move. I went to see my GI about it in December and when I got up to give him a hug he saw me freeze, the droopy face, the blue fingers etc. & he freaked out and I was pulled off Remicade. All this happened within 3 infusions.

A month or so later, in Janruary, I started Humira. I did not feel any relief what so ever until I hit the four month mark. Even then I would only get a few days of relief followed by the debilitating Crohn's pain. My Gi scoped me again in April and my disease spread. It is now in my ileum, whole colon, Rectum, mouth, esophogus and stomach. He bumped up the dose to one shot once a week. Again, only a few days of relief. We were debating up it up to two shots, once a week but that would mean I would be the YOUNGEST person in the USA on that high of a dose. Even the Abott company said that they would not take the risk & offered me to get in a clinical trial at age 18 for a new drug. Well, I'm 16. I can't wait that long. So, after a nasty hospital stay last month, I recently started Cimzia. It is not approved for people under 18 but my doctors wrote a letter to the company stating that it was a 'medical neccesity' so I am currently on that to hopefully get in remission.

Again, all of this is 'rare' and I seem to get the rarest of rare side effects/reactions. I wouldn't change any of my experiances. My Crohn's flare has been going on way too long and I want to keep all of my body parts. Life's full of risks but I'd rather take the risks and actually have a good quality of life one day.

 

[Rossy]

There is of course Indeternminate Colitis which of course means that the disease cannot be easily distinguished as being either Crohns or UC. However its rather a mute point as of course what you need is to get your pain and symptoms under control, you have IBD. I would think that 10 months on pred is not good and you would/should question the merit of staying on this. You need another opinion on your drug treatment.
With regard to the camera, as far as I am aware they will take biopsies at the time so unlikeky to miss anything, but from my experience its normally quite evident visually.
Sorry can't add more than.