Scar Tissue or Inflammation?

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mindyk81
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Date Joined Oct 2007
Total Posts : 54
   Posted 11/6/2007 11:54 AM (GMT -7)   
Is there a way they can tell if a stricture is caused by scar tissue or inflammation? A colonoscopy and Upper GI/SBFT has confirmed a stricture. The doctor is thinking of switching me from Imuran to Remicade or Humira. My question is if it's just scar tissue, why change meds? I haven't been feeling well, but I don't know what to do.

TammyGrl0528
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Date Joined Jun 2007
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   Posted 11/6/2007 12:47 PM (GMT -7)   
I don't know the answer to your question, I am sorry, but have you ran this thought by your doctor? I would think your doctor wouldn't change meds unless totally necessary. Are you comfortable with your doctors abilities? I hope you are, and I hope you are able to get the answers you are looking for.

Maybe someone who knows more about this than me will come a long with an answer for you.

Wishing you all the best!
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njmom
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Date Joined Apr 2006
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   Posted 11/6/2007 12:56 PM (GMT -7)   

Trust but verify. Docs can make mistakes. Sounds like you do need more info from your doc.

You can ask the doc what s/he saw. Did he see signs of active inflammation? Is this why s/he is proposing a switch?

You are quite right - why change meds if it is only scar tissue? 

If you are not feeling well, even though you have been on Imuran for four months or more, then that might be the real reason the switch is being proposed.  


Daughter (20) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress and needing more fiber but landed in hospital in 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill), SCD multivitamin, yogurt, vit D3 1800IU, 900+ mg calcium, 50 mg B complex vit, 25 mg iron. No longer on SCD diet.   
 


Lil1EB81
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Date Joined Oct 2007
Total Posts : 13
   Posted 11/6/2007 3:04 PM (GMT -7)   
Really, if you get a gastroenterologist to admit that you have scar tissue- you have just witnessed a miracle.  Most gastro's are against surgery.  There are many pros and cons to it.  Let me tell you a little story.  I was diagnosed with crohn's on my 19th birthday- literally that day July 3 2000.  Within a matter of 5 months i went from massive diahrrea to not being able to go to the bathroom at all. After a small bowel series I was told that I had massive inflamation that only left 1cm of able dilation in the area of my ileosecal valve.  The gastro doubled the steroids that i  had already been on since diagnosis and threw me on imuran.  The combination of the two made me nuts- I typically have every adverse reaction possible w/ meds- i guess i am hypersensitive or something- anywho the combo of being wired and starving from the pred and weak, throwing up and generally feeling like i constantly had the flu, I flushed both meds down the toilet.  Mind you, I was not a person that gave up easily.  I was going to college full time, working part time, I was in a sorority and was a cheerleader at college.  I thought well if eating is what hurts me I just will not do it, and as a classic me always taking things to the extreme I wound up 73lbs the day I got married (2 years after flushing meds and 6months after graduating college)  Anyway, something switched in me looking into my husbands eyes at the altar- how could i marry him and promise my life, when i am slowly killing myself- mind you I was not anorexic because I thought that I was fat- I just knew eating hurt, made me miss class, call off work- etc so I just stopped.  Finally- I took control of my disease again. I saw new gastros, and a surgeon!  When you go to see a surgeon, if he is worth his salt he will ask for all films, write ups, blood work, etc for your first appt- he told me that the lower bowel series I had way back 5 mos after diagnosis was already stricture, and that any med I was put on for that was a waste of time- and actually wrote a letter to the MD I had at the time about his neglet.  ALWAYS FIND OUT IF IT IS SWELLING OR SCAR TISSUE___GET A SURGEONS OPINION!  Taking meds that are so hard on your body for no reason is just rediculous, and I will never forgive myself for what I put myself thru because I was tired of no answers from my doc- get another opinion.  Keep a journal for a month before seeing the new guy or the surgeon.  I know this was very long, and believe me I left out alot, but I hope it helps! tongue  

Erin, 26, Pennsylvania
Crohn's disease, ankylosing spondyllitis, vasculitis
Second illeosecal resection scheduled for 12/4/7-yikes!!!


yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 11/6/2007 4:00 PM (GMT -7)   
my adhesions seem to have caused inflammation, so that is even another direction to take this. surgery is the only way to tell. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


JudyK89
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Date Joined Dec 2006
Total Posts : 1986
   Posted 11/6/2007 5:36 PM (GMT -7)   
Usually they can tell by colonoscopy, but if they can't, that's why they do a biopsy. A biopsy will tell them a lot. You need to ask your doctor these questions and if you don't trust him enough to discuss this with you, you have the wrong doctor.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


mindyk81
Regular Member


Date Joined Oct 2007
Total Posts : 54
   Posted 11/6/2007 5:38 PM (GMT -7)   
To Lil1EB81:

Thank you. I am worried that the doc's going to put me on all of these other drugs that won't really address the issue. My doc is totally against the surgery too. I don't know what else to do at this point. I'm tired of being in pain on and off, and I am afraid of trying new meds that may not be the answer. It's so frustrating. I have an 18 month old daughter who needs me, and the last thing I want is an emergency situation. I know for a fact that this stricture has been there for at least 4 years. That worries me to no end.

belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 11/6/2007 6:14 PM (GMT -7)   
If you have stricturing crohn's disease (where stricture formation is the predominent problem) going on remicade might make things worse. There is a body of evidence that suggests remicade heals ulcerations and inflammation so fast that it can actually contribute to stricture formation. You need to have a really frank discussion with your GI and perhaps ask for a surgical consult.

I agree that surgery should be a last resort, but I also see Remicade as my ace in the hole. If I ever get really sick and nothing else works then biologic therapy will be there, but in 2004 I was 11 years from my last resection and was having obstructive episodes with depressing frequency. At one point my GI started talking about upping the ante and starting my on Remicade. I figured my strictures were already so bad -- a balloon dilatation had only been able to open the stricture to less than 1/8th of an inch -- that I didn't want to waste remicade on a lost cause. I had surgery in 2005 and the pathology proved that my instincts were bang on. The stricture was completely occluding the bowel by that point and ulcerations ahead of the stricture were through the lumen. I made the right decision to have surgery (actually I probably left it a bit too long).

Most recently, during a recent exacerbation of the disease, there was again talk of Remicade, but given all the research my GI is now reluctant to start down that road because of the stricturing nature of the disease. We were able to get the inflammation settled with immuno-suppressants and anti-inflammatories (azathiopri8ne and Pentasa). The biologics are still there for me if I ever really need them (if I get a fistula again) but for now I'm glad that we've charted a more conservative course.
Belleenstein:

30+ years living with Crohn's.


ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 11/6/2007 7:00 PM (GMT -7)   
I have a 20 cm stricture in my terminal ileum and just upped my meds to Humira. I don't know if there's a way to determine if the stricture is due to scar tissue or inflammation, without actually undergoing surgery. All I know is, I wasn't feeling well on Imuran and thought I would try Humira before going to see a surgeon. I just started Humira two weeks ago and cut my Imuran down from 125 mg to 100 mg, even though my GI wanted me to stay on the 125 mg. Two nights ago, I thought I had an obstruction, so I'm definitely not feeling better yet. My doctor has been recommending Humira or Remicade for months, and it was not until recently that I accepted the fact that my current treatment (with Imuran) wasn't working for me. If the Humira works, then I guess my stricture is due to inflammation. If it doesn't, I'm going to see a surgeon.

There's no one way to treat this DD. My brother also has CD and chose to have surgery before trying any medication other than Pentasa. He's a surgeon and sees things black and white - it hurts, so cut it out! I'm on the other end of the spectrum - I manage medical malpractice claims and see all that can go wrong during surgery and am trying hard to avoid it. I can't say I'm doing everything I can do avoid surgery because I have not tried the SCD or the Maker's Diet. I just don't have the discipline or time to shop, prepare, cook and stick to those diets.

Your doctor may recommend different treatments, but ultimately, it's your choice. All of our options have inherent risks, advantages and disadvantages, so the decisions we have to make are very difficult. Have you tried Entocort? I had a couple of good months when I took Entocort along with Imuran. Maybe it can buy you some time while you try to sort through your options. Good luck with your decision and feel well.
CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira, Imuran and Entorcort. Hope to dc Imuran and Entorcort within one month of starting Humira.


inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 11/7/2007 9:20 AM (GMT -7)   
There's is no way to tell immediately. You can tell if you are scoped after you are treated for the inflammation. Once the inflammation is gone (and confirmed by the biopsy done during the scope) the strictures seen in the scope are all scar tissue.

Belleenstein is right to warn you about remicade. I've never taken it for the exact reason she mentioned. Fast healing does cause more scar tissue. For me it wasn't an option because pretty much any additional amount of scarring would entirely close the ileum.

The stricture is not necessarily the cause of all of your problems (and surgery to remove it might not resolve things). I've had mine for years too, and when the inflammation is gone I feel like a normal person. It was the inflammation, not the stricture, that caused the problem. If changing meds helps the inflammation, you may be able to live normally with the stricture.

Good luck.
Currently in remission!


jdiane
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Date Joined Jan 2003
Total Posts : 1131
   Posted 11/7/2007 11:37 AM (GMT -7)   
Well, generally speaking, if your not responding to the medication therapies then chances are it's scar tissue. A lot of GI's will go high dose steriods and if there is no change, your most likely looking at scar tissue. But, if it is inflammation and your still not responding to the medication therapies, then I don't know why surgery would be so out of the question. Yes, surgery should be a last resort, but if your not repsonding to the therapies then there you go, your last resort is surgery. You gotta weigh quality of life in there.... Good luck to you!
 
 


JudyK89
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Date Joined Dec 2006
Total Posts : 1986
   Posted 11/8/2007 8:05 AM (GMT -7)   
A GI can tell from a colonoscopy (and sometimes other tests) if a stricture is from inflammation, scar tissue, or as in a lot of cases, both. The surrounding tissue to the stricture tells them a lot (is there active inflammation?), and sometimes the biopsy can tell you if the stricture tissue is fibrous, ulcerous, inlfamed, or not. This is not full proof, but it is how GI's make decisions every day on medications vs. dilation vs. strictureplasty, vs. surgical resection. It is an educated guess on the facts presented to them through the various tests, scopes and radiographs. I'm not saying it's fool proof, but what part of medical science is?
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/8/2007 8:38 AM (GMT -7)   
belleenstein said...
There is a body of evidence that suggests remicade heals ulcerations and inflammation so fast that it can actually contribute to stricture formation. You need to have a really frank discussion with ur GI and perhaps ask for a surgical consult.
Belleenstein,
 
I've been doing some research and it seems that there are studies now showing that this isn't necessarily the case (anymore).  It seems the longevity of the disease, the severity of the disease and the presence of ileal disease were more predictors of scar tissue than the Remicade. 
 
One study even showed Remicade helped narrowing that was inflamation and fibrous tissue.
 
This is a controversial topic as some doctors believe we will get the scar tissue regardless of the treatment (if we're going to get scar tissue) whether it's Remicade, Humira, Immunosuppressants, etc.  After all, we've been gettting strictures (scar tissue) for longer than Remicade has been around.  The research showing that Remicade isn't necessarily the cuplrit is relatively new, and goes against what doctors have believed for a few years. 
 
I do know that I was in remission while I was on Remicade, and wish that it didn't have so many side effects (or the Humira for that matter).  I didn't start getting blockages (from narrowing from inflammation) until after I had to stop taking the medication.  Again, a one rat study. 
 
Mindy,
 
You need to have a frank discussion with your doctor and ask him why he thinks you should switch to this medication when you have no symptoms.  Maybe your blood levels?  There could be many reasons. 
 
Good luck, and let us know what the doctor says. 


Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 

Post Edited (JudyK89) : 11/8/2007 8:51:08 AM (GMT-7)


caras
Regular Member


Date Joined Apr 2006
Total Posts : 59
   Posted 11/8/2007 1:08 PM (GMT -7)   
i went on remicade after a year of trying so many meds to help with peri-anal fistulas and abscesses.
the remicade was a miracle for me and i could actually get out of bed for the first time in so so long.
it put me into remission...until i started having extreme stomach cramping.
about 8 months after i first started remicade, i had a SBFT and it showed a major stricture in my illeum where i had initially had minor inflamation (that was from my initial diagnosis)
my GI actually told me that the remicade probably healed the inflamation so well, which then created all the scrar tissue causing a stricture.
he actually recommended the surgery right away, rather than waiting for an emergency situation.
i had a ressection a month or so later (may 2006) and have been in remission since then.....
until about 6 weeks ago..i now have peri-anal abscesses and fistulas again so i've just stared back onto remicade taking the risk of another stricture.
however, since my most recent colonoscopy didnt show any inflamation in my gut at all..i'm hoping that there's nothing to turn into scar tissue.
good luck with everything!

nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 11/12/2007 5:44 AM (GMT -7)   
I too have the same problem and being diagnosed the end of August have done a bit of research. I called the pharm company that makes remicade and they said it is not approved for stricturing crohns. I am on pentasa and entocort and slowly getting better. I went from 12-15 liquid stools to 3-4 liquid and semi liquid stools a day and my pain is all gone. I am not sure if I have made the right choice or if scar tissue will develop but this is the plan I chose with the GI doc and am trying to be optimistic.
Good luck on your decision
Chris

gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 11/12/2007 6:32 AM (GMT -7)   
Hi I would just like to comment here that I can see a difference in size of stool passing threw and gage some of my decisions on how things are working if it is narrowing I would think stools would not be able to pass very good.Although the intestine is able to strecth.I don't know but that is how I think about it ,whether or not BM's are getting out. I am sure reducing inflamation lets things work better. lol gail

Nicoleyear1
New Member


Date Joined Dec 2012
Total Posts : 12
   Posted 1/1/2013 2:15 PM (GMT -7)   
I am in similar situation, my Dr said go on Humeria or Remicade, and then changed mind to say if its scar tissue, better to get it removed with surgery, and save Remicade and Humeria? My stricture is small in length but they can't tell me how WIDE it is? Like how much can pass through? Is there a way of telling this? They want to do surgery in a week and I am freaked out!
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