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WWYD? Simmering CD ==> stricture ==> ??

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Posted 11/15/2010 3:51 PM (GMT 0)
I am feeling much better compared to when I first came to this forum.  The flare that I've been in since March '10 is receding - I have an appetite back, I'm not nauseated after I eat, I haven't had D in a few weeks and most of my joints are not aching.

Starting about a year ago I noticed that I had pain in the URQ if my bowels were full - I would only get this pain right before a bowel movement.  Then starting late this summer, as my flare was at its peak, the pain was constant and annoying.  I would say that it was at worst a 3 on a scale of 1-10.  It has gone away, mostly.  But now, instead of appearing suddenly before a bowel movement, it is still a constant dull ache, waxing and waning depending on when I've last eaten.

I've mentioned this to my GI a few times.  When it started last year I told him and he shrugged.  When I saw him this summer I told him and he shrugged.  When I was at my worst I called his office and he prescribed an anti-spasmodic med.  I did not take it, because I don't think this is a spasm and I don't want to slow my bowels any more than they already are (I am a Crohnie who tends toward C, not D).  I am pretty certain I have a stricture somewhere (I am a stricturing Crohnie, not a fistulizing one).

So I've been thinking whether I should call and schedule a SBFT, or some other looksie method.  I'm feeling well enough now to consider drinking that nasty barium.  So what if I have a stricture?  I probably shouldn't overthink this, but from what I've seen on this forum, most of you don't even talk to your DR unless you're vomiting and presenting with a probable obstruction.  WWYD?

Posted 11/15/2010 4:24 PM (GMT 0)
Honestly I deal with it every day and no one can give me a really great explaination. Other then what I have said it feel like there is food going over open wounds. I have found that sipping on apple juice after a meal seems to help me with getting thru more gentlely.
Posted 11/15/2010 4:44 PM (GMT 0)
I had this same debate recently with myself/my GI doc for about a month.  I felt good overall.  A little bit of pain from time to time after eating and some nausea, but no other real symptoms.

However, everytime I went to see my GI doc (and I'm currently in a clinical nutrition study so I go A LOT) my CRP and ESR levels were elevated and I had a slight fever.  My GI doc said my disease was probably smoldering and we should do a SBFT just to make sure nothing was wrong.  I felt like, why???  Didn't want to do it.  So we talked it over and decided to wait until I felt ready to do it.

Flash forward to a few weeks ago...I decided I was ready and went in for the SBFT.  It was less awful than I remembered and it was over quickly.  I just got the results back late last week - and I have a small stricture in my upper bowel that looks like active disease.  So, what do we do about it?  We basically just wait and keep an eye on it....so, am I glad I know it's there and that is what is causing the elevated CRP and ESR, yes.  But it doesn't really mean much of a change in my meds. 

Have you had any other inflammation markers when you've gone to the doc?  or mainly just the symptoms you mentioned below? 

I'm not for barium and radiation exposure if you don't have to do it....but at the same time, if you are having other issues, it's good to make sure it's nothing more serious.

Posted 11/15/2010 4:53 PM (GMT 0)
It can't hurt to have the SBFT to rule out strictures etc. If you do have one, maybe a change up in meds "might" be called for. Maybe moving up to 6mp or something like from the 5ASA's. Just a thought. Hugs!
Posted 11/15/2010 4:56 PM (GMT 0)
CDS1, my inflammation markers are typically normal or low. I think the highest my CRP has ever been was 4, and that was a few years ago before I had my CD under good control AND in the middle of allergy season when my asthma was bad. ;-| It's hard to get my DR's attention because I'm not having 15 BMs/day, I'm not losing tons of weight. The only other evidence I have of active inflammation is my joint pain, and that is still present although much better than it was. Even my fatigue has gone away - thank goodness. It feels good to be able to come home from work and make dinner - couldn't do that last month.

Thanks for your feedback. Your experience is what I would expect for me - although did anyone talk to you about a steroid trial to reduce the stricture? My rheumatologist is kind of pushing for me to go onto one of the biologics. I haven't ever had a resection and I'd like to avoid that, but I'm not sure I'm ready to take on the risks of the bigger medical guns.

I had an esophageal stricture a few years ago that my GI opened up with a balloon. That worked well, but I guess depending on where a bowel stricture is you might not be able to do that.
Posted 11/15/2010 5:13 PM (GMT 0)

Oh wow – a CRP of 4!  That is amazing!  Mine was getting up to 77...so they did have cause for concern.  Though I'm sure with normal numbers like that it is really hard to get your doctor's attention when you do have issues!   Having your doctor just shrug at your concerns is not good either. L

 

My doctor and I did talk about meds, but she didn't want to add anything into the mix right now.   That is an option going forward though if the stricture or my symptoms get worse.   I'm currently on Remicade and she doesn’t like to add in steroids unless completely necessary.  She did mention the balloon option, but was unsure of how well that would work based on the placement of my stricture.  Though I was going to ask people on the board about that and see about experiences – so I’m glad yours was positive! 

 

I’m in the clinical diet study until the end of this month, but once that is done she is going to have me come in once a month to see how I’m feeling and monitor the stricture in that way.  I’m also working to get x-rays from past GI docs so we have something to compare this SBFT with.  I also asked about having an MR enterography done to make sure this is active disease vs scar tissue, and she said we could do that as well.

 

In my case too….I was really hoping to try and get pregnant early in 2011, but my doctor wants to be sure the stricture and my disease is more in control before I proceed with that.  So that was disappointing, but also even more reason to do what I can and get healthier!  It’s just frustrating when you feel pretty good!  I never would have gone to the GI doc with the symptoms I’m currently having without being part of this study…

 

Good luck!!  Let us know what you decide to do and the results!   

Posted 11/15/2010 5:35 PM (GMT 0)
any chance it is a gall bladder issue? I had my first flare in 12 years this year and there was CD pain including (what I thought was crohns related) URQ pain... which came and went... and now the flare is under control the pain in the URQ was more of a dull ache... got a ultrasound and sure enough have a gall bladder stone which is acting up... so my flare and my GB issue came around the same time and as CD got a little better the GB pain was worse... now I have to get the GB removed.

Just throwing this out for you as another option.

B
Posted 11/15/2010 6:38 PM (GMT 0)
Yeah, I had a thought about gallbladder. I spoke to some doc about it early in the summer and what she said was I'd have significant spasmodic pain with food. Is that your experience?

What I'm feeling most of the time is like there's a small ball of pain right inside my ribcage near the diaphragm. I can't find a sore spot with my fingers. Sometimes the pain is in front, sometimes in back. I can stretch my body and relieve some of the pressure but the pain remains. It is constant and not spasmodic (anymore - used to be when it was preceding a bowel movement).

Hmm. So perhaps a gallstone would do this? I'll check it out.
Posted 11/16/2010 2:36 AM (GMT 0)
WWYD what would Yoda do? ;0)
Posted 11/16/2010 2:49 AM (GMT 0)
Yoda?!?!?   hahahahahaha

Actually Kaz, that symptom sounds a lot like a friend of mine who DID have gall bladder issues that subsequently involved it being removed.  Other than that I got nothing, no experience, except to say my back hurts that as I am getting ready to have a really rough day.  When the day is done, so is that pain.

Posted 11/16/2010 4:16 AM (GMT 0)
Go to yoga Yoda would.  Twist he would until his internal organs were massaged.

Call his DR he would and make an appointment for Thursday.

;-)))

Posted 11/16/2010 4:16 AM (GMT 0)
how about trying entocort?
Posted 11/16/2010 5:03 AM (GMT 0)
Your symptoms sound exactly like mine, except mine does not go into my back, but i know as a GB issue gets worse there is back pain. I'd say check it out.

best of luck

B
Posted 11/16/2010 3:13 PM (GMT 0)

Janicea, thanks for your suggestion - I used entocort about 2 years ago for 6 months to help with my hand arthralgia, then weaned off and put sulfasalazine in.  I wasn't having this pain then.

Bectoria, I did read about CD and gallbladder yesterday - GB issues stem from inflammation in the ileum.  I wonder if this development (if it is indeed GB) will bring my GI to another conclusion regarding biologics.  So far his feeling is that I'm "not sick enough."  sigh.

I read about treatment for gallstones.  Why did your DR recommend removing your GB?  How were your stones visualized, with external u/s or endoscopic u/s?  Did you discuss any other treatment besides surgery?

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