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

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redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 9/28/2008 5:10 PM (GMT -7)   
 
 
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.....
 
 
29 YO Male
 
-CD diagnosed in 2005 illieum
-63cm bowel resection in Feb 08
-Steroid dependant following surgery
Humira Start date 8/1/08


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 9/28/2008 8:27 PM (GMT -7)   
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!
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 9/29/2008 5:31 PM (GMT -7)   
Anyone else?
29 YO Male
 
-CD diagnosed in 2005 illieum
-63cm bowel resection in Feb 08
-Steroid dependant following surgery
Humira Start date 8/1/08


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/29/2008 5:53 PM (GMT -7)   
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
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 9/30/2008 10:12 AM (GMT -7)   
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.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/30/2008 3:09 PM (GMT -7)   
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.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 9/30/2008 3:34 PM (GMT -7)   
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.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/30/2008 7:10 PM (GMT -7)   
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.

ShammyD
New Member


Date Joined May 2011
Total Posts : 6
   Posted 5/20/2011 7:36 PM (GMT -7)   
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?

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 5/20/2011 7:56 PM (GMT -7)   
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.
 
 

NY Veggie
Regular Member


Date Joined Apr 2011
Total Posts : 280
   Posted 5/20/2011 10:04 PM (GMT -7)   
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
Brain Aneurysn FIXED, Crohn's, Migraines, Fibromyalgia, Hypothyroid, Polychondritis, Pericarditis, Depression
Lacto-Vegetarian Low-Residue Diet,
Solgar V-75, Gentle Iron, Calcium, Vit D, Flaxseed Oil, B2, Biotin, B12 shot, Turmeric
Pentasa, Metaprolol, Gabapentin, Synthroid, Protonex, Plavix, ASPIRIN, Flexerol, Zocor, Xanax, Fiorinal
Was on Entocort, INH, Prednisone, Prednisolone, Cipro, Flagyl

sudsmom
Regular Member


Date Joined Nov 2010
Total Posts : 167
   Posted 5/20/2011 10:04 PM (GMT -7)   
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
CD since 1981, numerous surgeries including fistulaectomy, resections, adhesion removal.
Current medications: asacol, nexium, flagyl.
Successful fistula, adhesion, stricture removal (2 ft small bowel) on April 12th!
Will be going off Flagyl in a week, back on Humira sometime soon.

NY Veggie
Regular Member


Date Joined Apr 2011
Total Posts : 280
   Posted 5/20/2011 10:09 PM (GMT -7)   
Hi sudsmom! seems we posted to this thread at the same time!
NY VEGGIE
Brain Aneurysn FIXED, Crohn's, Migraines, Fibromyalgia, Hypothyroid, Polychondritis, Pericarditis, Depression
Lacto-Vegetarian Low-Residue Diet,
Solgar V-75, Gentle Iron, Calcium, Vit D, Flaxseed Oil, B2, Biotin, B12 shot, Turmeric
Pentasa, Metaprolol, Gabapentin, Synthroid, Protonex, Plavix, ASPIRIN, Flexerol, Zocor, Xanax, Fiorinal
Was on Entocort, INH, Prednisone, Prednisolone, Cipro, Flagyl

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 5/21/2011 7:23 AM (GMT -7)   
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?
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 5/22/2011 8:51 AM (GMT -7)   
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. 

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 5/22/2011 9:19 PM (GMT -7)   
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.

NY Veggie
Regular Member


Date Joined Apr 2011
Total Posts : 280
   Posted 5/24/2011 12:49 AM (GMT -7)   
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
Brain Aneurysn FIXED, Crohn's, Migraines, Fibromyalgia, Hypothyroid, Polychondritis, Pericarditis, Depression
Lacto-Vegetarian Low-Residue Diet,
Solgar V-75, Gentle Iron, Calcium, Vit D, Flaxseed Oil, B2, Biotin, B12 shot, Turmeric
Pentasa, Metaprolol, Gabapentin, Synthroid, Protonex, Plavix, ASPIRIN, Flexerol, Zocor, Xanax, Fiorinal
Was on Entocort, INH, Prednisone, Prednisolone, Cipro, Flagyl
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