Thickening of Intestine? Anyone have this?

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Lili_Enigma
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 7/8/2009 5:48 PM (GMT -6)   
Hi there,
 
I'm new to Crohn's... just got my "working" diagnosis in March... I had a CT scan done in February that showed a thickening of my small intestine (where it meets my large intestine, I guess it's my Iliem?). It was fairly extensive swelling , and was causing partial blockage... I couldn't eat for 6 weeks, and now in July, having been on Entocort for 5 months and a fruit/veggie free low residue diet my symptoms aren't any better. My GI doctor is going to have to consider surgery due to the location, he can't get a biopsy any other way. I had 2 scopes done, one through mouth, one colonoscopy, but neither could reach, and both were relatively normal. The CT didn;t show any lymph nodes. The GI doctor says it could be cancer, but he thinks it is from Crohn's.
 
Question is: if I am on steroids, and my ESR is 6, shouldn't the thickening have resolved if it was inflammation?
 
My doctor is not very forthcoming in his information right now, just keeps telling me "we'll wait and see after the biopsy".
 
Have any of you had a thickening of the intestine from Crohn's? if so, what was it?
 
I'm getting a little freaked out after so many months of the big "C" word hanging over my head and no relief from the steroids.
 
Thanks for your info!
 
 
"working" diagnosis: March 9, 2009
symptoms misdiagnosed: 18 years
current meds: Entocort 9 mg/day, Percocet as needed for pain
 

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 7/8/2009 6:52 PM (GMT -6)   
If you have had trouble brewing inside, even without you knowing, you could have developed scar tissue. Repeated bouts of inflammation leave scar tissue behind and that scar tissue builds up. No amount of medication will reduce scar tissue. So even though it was caused by CD, it isn't treatable by steroids. But if it is active disease you may need a different medication or a combination of medications. I know it is hard not to jump to the worst possible scenario, we all do, but try to stay calm and wait for whatever tests your doctor needs to do. It is reasonable to assume that thickening could not respond to steroids and Entocort is on the more mild side as compared to prednisone. You may just need a higher dose for a short course. It sounds like you have a conservative doctor who wants to make sure not to jump the gun and over treat. If you are uncomfortable waiting you could always seek a second opinion. But the short answer to your questions is not necessarily, depending on what the inflammation is from. I hope you can get some answers soon and get some relief.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


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


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/8/2009 7:35 PM (GMT -6)   
I have several thickened loops in about the same place. And they're stuck together. I have to watch out a lot for SIBO. My GI never said anything about cancer. Just crohn's. I'm having surgery next month for something else, I'm hoping I can get the surgeon to take a peek over there too while he's in dealing with my illeum and hernia.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 7/8/2009 8:06 PM (GMT -6)   

Hi,  They used the word thickening quite a few times in the operative report (endorectal ultrasound) in regards to the different layers of the intestine at the stricture site in my colon. I would basically repeat what Zanne had to say.

I am going to have a small bowel ultrasound done in September as there has been some mild Crohn's in the ileum.

Good luck.


57 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Lap assisted sigmoidoscopy done May 11/2009


Lili_Enigma
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 7/9/2009 12:13 AM (GMT -6)   
Thanks guys, that makes me feel quite a bit better. That does make a lot of sense.

I have to admit, I really don't know very much about Crohn's yet, and it is hard to get information on this particular "symptom". My doctor is ultra-conservative and won't up or change my meds, or even discuss what the thickening could be beyond "chronic Crohn's damage, lymphoma or resistant Crohn's". what those are or the implications mean, he won't discuss until after the biopsy. I can't help but fret about the unknown factor! Lol He is a bit short on words... *sigh* you really reassured me! I really am glad I found this site! :)

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 7/9/2009 6:32 AM (GMT -6)   
I had extreme thickening and that is why they needed to remove it. Don't freak out about cancer, it's probably not that.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


moedon1
Regular Member


Date Joined Jun 2005
Total Posts : 139
   Posted 7/9/2009 1:24 PM (GMT -6)   
Keep coming back. I just came back in June. I had forgotten how supportive it is here. In regards to your questions Zanne says it perfectly. Generally scar tissue it the culprit and pred. will not do anything for that. I would seriously consider a second opinion if at all possible!
Good luck
Donna
 Formal diagnosis 3/2006, IBS 1992, Degenerative Arthritis Facet block and RFA, Seizure Disorder, Severe Carpal Tunnel both hands, SVT arrythmia, 2004 cardiac Ablation
Cushings Syndrome(thanks Prednisone), Asthma, Multiple Laps for ovarian adhesion to bowel, C/5 & 6 disc herniation - plate with screws, resistant to anethesia/most pain meds.  Chronic fungal infections.
Multitude of Meds. Have tried most Crohn's meds.  Gall bladder removal and Intestinal Lap. June 08.- Intestinal blockage July 08 moved on from on Humira..now on Cimzia. .Off the Cimzia 7/8/09.  Back on Humira.  Systemic fungal infection.  Waiting on Liver Biopsy & Hepatitis results.


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 7/9/2009 2:27 PM (GMT -6)   
I had thickening and scarrring in my iliuem for years and my doctor never mentioned the C word and it runs in my family. Prednisone did help me off and on but I finally had to have a bowel resection. I was tired of all the meds and the obstructions taking over my life. Good Luck!

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 7/10/2009 9:52 AM (GMT -6)   
Unfortunately, one of the long terms effects of Crohns is thickening in the intestines due to scarring. My ileum is scarred quite a bit but as long as things can pass through, my doc isn't too worried about it. As more and more scarring takes place though, I'm sure I will eventually need to have a bowel resection.
Sorry about your new diagnosis but as you can see, you aren't alone. We'll be happy to answer whatever questions you might have. :)
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.  Currently have C-Diff.
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Levsin, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 7/10/2009 11:10 AM (GMT -6)   
When my daughter was first diagnosed, there was so much swelling (thickening) that the doc couldn't get the scope through. Both the CAT scan and SBFT showed a very long stricture.
 
However, with Entocort and dietary changes, my daughter's stricture vanished - seems it was due to inflammation, not scarring.
 
If there is no change in symptoms, is it possible the Entocort just isn't working? Based on my daugther's experience, I know it is quite possible to have low CRP and sed rates but still have active Crohn's. Her CRP was less than 1, and sed rate in the single digits, when the colonoscopy showed active inflammation.

ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 7/10/2009 11:31 AM (GMT -6)   
My sed rates and CRP have never been indictive of how bad my current condition is either.  I agree with the previous post.
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.  Currently have C-Diff.
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Levsin, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort


strong hearted
New Member


Date Joined Jul 2013
Total Posts : 1
   Posted 7/20/2013 2:05 AM (GMT -6)   
Hi there.
I have had crohns for 19 years and have had only one surgery because after I was diagnosed I read on crohns and learned what foods to advoid and that stress is the number one cause for crohns flaring up on you. Now the foods everyone is different on what foods will bother you like milk doesn't bother my crohns but it might your and the only veggies I can eat is greenbeans all others will double me over. I have had my Dr say I have thickening of the bowel and was explained to me of it being maybe a few things like its the crohns inflammation flaring up or it is old scar tissue buildup which causes narrowing of the inside bowel wall which will evenly keep thickening to where it will buildup and cause blockage and you will need surgery. I also had a scare with the big C but what they thought was the c word turned out to being just polyps that were not cancer. I see my doctor in Danville pa and his name is Komar he is the chef GI doc and I think he is great. I think if ur Dr don't communicate like you want and doesn't give you info that you should see some else after all this is the Dr you will see the rest of ur life and you should have somewhat of a bond and feel comfortable with him. My Dr gives me hope and feel like if it wasn't for him I won't be here. He has me on Imuran, humria, budesionded its like prednisone but not has hard on ur body as prednisone, but D, B12 shots. Now the only bad thing is about my Dr is he does not subscribe me any pain medicine because he believes taken pain medicine only slows your bowel up and that's not good when you are having a flare bc it can cause your bowels to slow up to much and cause blockage. I have been on those medications for 3 yrs and I have been in readmission for 3 yrs and I haven't felt better.
Hope all is well and everything is working out for you and everyone.
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