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Stricture vs Active Crohn's.... The pain is unbearable!

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Posted 9/29/2008 12:10 AM (GMT 0)
 

Okay so Im comming up on my 60yh day of HUMIRA!!! It has helped alot but Im still having issues. My GI dosent know if Im having active CD or if its just a stricture. How can you tell???

My colonoscopy came back normal. Small bowel followthrough normal. But I keep getting these partial obstructions which leave my belly distended and in severe pain.

My doc thinks I should have a capsul endo, and if it gets stuck, well then I have a srticture that needs to be surgically repaired any ways.....right? My Insurance will not pay for the test because my colol and small bowel series  were normal.....

 

Posted 9/29/2008 3:27 AM (GMT 0)
Have you tried appealling the insurance decision? Last time I needed something done for my son that they didn't want covered, I asked for names when they said it was denied, letting them know that I would be sure to pass their names on when my son needed a $40,000 surgery because he wasn't given a $2000 test to treat the problem early. It only took a couple of times and they covered it. Sometimes the squeaky wheel really does get the grease! It's worth a try anyway!
Posted 9/30/2008 12:31 AM (GMT 0)
Anyone else?
Posted 9/30/2008 12:53 AM (GMT 0)
Hi I had a CT done to help find out with me what was going on, I'am not sure if the SBF can see all the narrowing if there is some or not . You mentioned the pain is very bad how often and how long has the bad pain been going on ? Sure hope things get better soon .I see you also had a resection done in Feb. are you having the same problems you had before surgery? lol gail
Posted 9/30/2008 5:12 PM (GMT 0)
Yes, a small bowel follow through does show strictures. I have a stricture. It is quite painful when it is inflamed. If you had a stricture it would have shown up. I just had a sbft doen in June or July and you can clearly see the stricture. My dr also saw the inflammation that my sed rate did not show.

Are you sure you're having partial obstructions, or could it be a flare? Flares can make you look pregnant, your belly swells so much.
Posted 9/30/2008 10:09 PM (GMT 0)
I have problems with obstructions. Nothing shows on tests, except when I am in pain and then it just looks like I am constipated. What my doctor and I believe is happening is adhesions wrapping around my intestines and causing the obstruction. Sometimes they clear in a matter of hours, sometimes it takes days. The last one took 5 days to clear. I looked 7 months pregnant, went into the bathroom and came out with a perfectly flat tummy. The only thing they can do if it is adhesions is more surgery which then creates more adhesions, vicious cycle. For now, I'm in a wait and see mode.

Have you had any tests done when you are having the unbearable pain? Just another theory/thought.
Posted 9/30/2008 10:34 PM (GMT 0)
Strictures sometimes can be missed on SBFT's.  A better test is the CT Enterography, which is not perfect but is generally better at identifying strictures.  I'm not saying you definitely have a stricture, just that it's still a possibility, even with a clear SBFT.

Posted 10/1/2008 2:10 AM (GMT 0)
I have a stricture as well. Not sure how bad it is because I also have inflammation there. After I have my baby, I'll consider surgery if I start having obstructions again. Thank God they finally stopped when I was 4 months pregnant, otherwise I'd have had surgery while pregnant. Scary stuff.
Posted 5/21/2011 2:36 AM (GMT 0)
I have Crohn's, and my experience is that every other test in the world missed my problem, but the Small Bowel Follow Through showed that I had Crohn's and a very serious stricture toward the end of my small bowel. I looked at the film and it's very obvious. I know where the stricture is, and I can tell when my pain is located there. I was recently hospitalized for a week, with horrible NG tube in for 3 days, due to an obstruction at the stricture caused by eating a carrot. Luckily, the NG tube finally got the carrot out,
To make things more interesting, because of several abdominal surgeries, I also have adhesions which are affecting a different area of my bowel, by strangulating it.
Both of these are VERY painful, but I can tell what's what by where the pain is.
Anybody got a solution for strictures or adhesions?
Posted 5/21/2011 2:56 AM (GMT 0)
My guess is the only way you can tell whether the stricture is due to scar tissue is to visualize it - a pill cam could see where the colonoscopy left off. But so could an endoscopy. My daughter had a cat scan w/contrast and SBFT and not a single doc could tell whether the stricture was due to scar tissue, or just inflammation. 

I can't agree it is OK to use a pill cam if you might have a stricture. IF you have a stricture, you might not need surgery if it is due to inflammation. Seems they could do an endoscopy instead, starting from the mouth down.

 

Posted 5/21/2011 5:04 AM (GMT 0)
I can attest to the fact that cat scans DO NOT show strictures very well or at all in my case so I totally disagree with beave.
I was Dxed with IBD in the ER after a double contrast cat scan. There was a lot of thickening of my ascending colon. I was in the hospital on liquids and cipro/flagyl for 3 days. They did a colonoscopy which showed some ulcers in my colon and then they sent me home with pentasa and entocort and told me to eat whatever I could tolerate. (HAHAHA.. really not funny)

Being a veggie I had some beans and some fresh vegetables when I got home and wow was I in pain. The same pain that made me go to the ER in the first place! It wasn't until the small bowel series that the stricture became evident and it was 20cm

Even after many months of pentasa and entocort the stricture stayed pretty much the same. It's hard to know for sure because the SBS test was done by 2 different radiologists and it's best to have the same measuring etc etc.

My stricture is sooo narrow that a pill cam would easily get trapped in it.
If there is no improvement with your stricture after using entocort for a few months then it is probably all scar tissue at this point and the only thing to do is have a strictureplasty or a resection. I was told by 2 different GI's that they can't tell by any of these tests if it is scar tissue or active inflammation. JMHO
NY VEGGIE
Posted 5/21/2011 5:04 AM (GMT 0)
I just had 2 ft of inflamed small bowel removed along with a fistula (the main reason for the surgery) and a stricture. I knew I had a narrowing somewhere, but it never showed up. I had every test under the sun, but everytime I had the temporary obstruction, by the time they got me on the table, it was gone. This includes SBFT, colo, CT, Ultrasound, MRI enterography and numerous abdominal xrays. The MRI was done a week before the surgery, so I never saw that report - it might have shown something. I went to the ER at least 5 times with terrible pain, vomiting, etc. over a period of 5 years.

The surgeon found a knot of bowel with adhesions all over (I have had adhesions removed surgically before, and they do just come back, but the pain was so bad the surgery was worth it). There was a narrowing in the middle of that mess that was less than .5 cm. Surgeon said she couldn't believe anything was getting thru that mess. I was coping by drinking lots of Ensure and eating small meals. Apparently there was alot of inflamation there, which I had no idea - my sed rate was only slightly elevated. I was having 3 -4 normal bms a day. My worst symptom was pain.

It is much better now, but I am only 4 weeks post surgery. I am slowly adding stuff back into my diet. It was definitely worth it!

Oh and my 2 cents - I don't think a pill endo is safe if you think you have a stricture. You might end up having emergency surgery if it gets stuck.. Just my opinion :) I am not a medical doctor.

Good luck, and I hope you figure out what it is...
Sudsmom
Posted 5/21/2011 5:09 AM (GMT 0)
Hi sudsmom! seems we posted to this thread at the same time!
NY VEGGIE
Posted 5/21/2011 2:23 PM (GMT 0)
Isn't there a dissolving pill that is the same size as the pill cam that people take before the camera to see if they can pass it without getting trapped?
Posted 5/22/2011 3:51 PM (GMT 0)
Btw, my daughter's stricture was easily visible on a cat scan (with contrast) and SBFT. It was so bad that one GI suggested surgery right away, saying the surgery could give her 7 great years. I thought, "So what, after seven years she will be only 25 - what about the rest of her life???"

Today, thanks to meds and diet, the stricture is gone - we couldn't believe our eyes when we saw the SBFT and colonoscopy in 2008 and 2009, which both confirmed it was gone. So I'm not going to assume your stricture is scar tissue.  

Surgery is almost never a permanent solution for a Crohn's patient.  While there's no question surgery can be a blessing for Crohn's not responding to any med or diets, I do think in your case the doc's attitude to the pill cam getting stuck is a little cavalier.

Even pill cams which supposedly can be dissolved scare me, as I'm pretty sure somebody posted on healing well talked about such a pill cam getting stuck. 

Posted 5/23/2011 4:19 AM (GMT 0)
Zanne, did you see this post was from 2008? You and I both were complaining about our obstructions even then. Funny when these old posts come up.
Posted 5/24/2011 7:49 AM (GMT 0)
njmom.. When I was in the ER in unbelievable pain a year and a half ago, and the Dr on duty sent me for the double contrast cat scan (ingested liquid and also had contrast injected) the only thing that really showed up was the thickened ascending colon. No mention of my small bowel having problems at all. Had there been a hint of the 20cm stricture I don't think they would ever have told me to 'go home and eat whatever you want' I really wish they had seen it and told me, as I took their advice and was in so much pain until the sbs several weeks later. I would LOVE to have a CD-ROM of this but my hospital closed its doors and I don't have a clue how to order it!!
NY VEGGIE
Posted 2/13/2017 3:59 PM (GMT 0)
Hi everyone... Just reading through all of your posts.

I am wondering if my husband could have a stricture. Full workup at Mayo with traditional colonoscopy showed no active Crohn's, but he is in pain after eating still.

Did anyone ever try dilation of the stricture as treatment?
Posted 2/13/2017 4:29 PM (GMT 0)
Hi andrealeigh, I think I had mentioned this as a possibility in one of your other posts. I had one that had to be dilated twice. Usually if its in an area where it can be dilated its seen during a colonoscopy. Otherwise its picked up during a MRE. Mine was small enough that even though it was constricting quite a bit it wasn't affecting a length of the bowel long enough to show up very well on the MRE and would have been missed had i not already had the scope that determined its presence. So no test is 100% accurate. Technically he could have one in his small bowel that was not picked up. Did they do a pill cam?
Posted 2/13/2017 4:38 PM (GMT 0)
Labradorite~
Yes you did which is why I am researching this quite a bit. Can you tell me more about the dilation procedure (how long did it take, outpatient vs. inpatient, how long it took to see benefit)?

If this whole "constipation trial" doesn't work, his GI did suggest a capsule study. So yours was found on a pill cam?
Posted 2/14/2017 3:35 AM (GMT 0)
my stricture was found during a colonoscopy. the dilation was done outpatient during a colonoscopy. the insert a small balloon in through the endoscope and stretch the scar tissue with it slowly. some times it takes several tries to see results and sometimes it doesn't work. It did for me though and its a good option to avoid surgery if the stricture is reachable through a colonoscopy and does not involve inflammation or too much bowel. Results were pretty much immediate, I had a slight pain in my side for a few hours after but that is very unusual.I had the first dilation when the stricture was discovered and another about a month later to expand it to full size.

Pill cam would be the only way to investigate the cause of his pain if nothing shows up on an mri, CT or during a scope. only issue with that is the cam could get stuck and need to be surgically removed if a stricture is present so its usually avoided if a stricture is suspected.

I was definitely having major constipation issues before the dilation though. It was odd because the stool was soft but it wasn't coming out. haven't had any issues since

Post Edited (Labradorite) : 2/13/2017 10:27:09 PM (GMT-7)

Posted 2/14/2017 4:03 AM (GMT 0)
andrea, did you husband have an MR Enterography or a CT enterography?

A capsule study isn't appropriate if a stricture is suspected. It should only be done if MR or CT enterography show no strictures.

Note, however, that in some cases MR/CT enterography can miss strictures - due to incomplete distention of bowel, movement during scanning, or really narrow "web" strictures.
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