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For those who have had narrowing of terminal ileum

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Crohn's Disease
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Posted 9/14/2007 6:35 PM (GMT 0)
I was diagnosed with Crohns 3 weeks ago and have found this site very helpful.  I am on pentasa and entocort and had an appt with Dr. Ellen Scherl at Cornell today.  She was very knowledgable but is going to review my CAT scans with her associate to determine if the narrowing of the ti is severe enough to warrant laparoscopic bowel resection.  This was mentioned at the end of my appt. and I have to say I was taken back with the mention of surgery at this early stage of my treatment.  I still am alot of pain and she added rifaximin to the other 2 meds. For those who have had the narrowing how do they determine if it needs surgery.  I do not have an obstruction.  I am so confused on all this.  Could remicade be used to unblock the ti?  Surgery is a major thing...and I thought should be avoided...hoping someone has some experience with this.

Thanks so much

Chris

Posted 9/14/2007 7:06 PM (GMT 0)
I have Crohn's in the TI and have "stricturing disease". Thats the narrowing. If the narrowing is due to inflammation, then the general course is medications to decrease the inflammation. After long periods of inflammation, you can begin scarring. The only way to get rid of scarring is surgically. I had surgery 6 months after diagnoses due to scar tissue. The decission was made after long course of medications including steriods that did not resolve the problem, it was then determined to most likely be scar tissure causing my narrowing and not just inflammation.

Now, I would also ask about strictureplasty. This surgically opens up the bowel without removing.
Posted 9/14/2007 8:03 PM (GMT 0)
The question that you asked "if it is narrowing how do they determine if it needs surgery?" is the exact question I have right now. I had Crohn's in my small intestine (terminal ileum). I am having severe pain too after eating and was told a test on Wed. didnt show an obstruction. I see my GI today and will see what he says. I had an obstruction last in Oct. 2005 and it cleared up after 3 days in the hospital but I was still in severe pain and that lasted for 2 weeks until they did Remicade. I mean high dose steroids, TPN (total parental nutrition for bowel rest and nourishment) and nothing was touching the pain. I finally got out and avoid surgery thankfully. I feel like I am having the same thing happen again only this time I have been on the Remicade for 2 years (infusion every 8 weeks) and Imuran 175mg which he added after the problems I had last time. The danger with having surgery alot which I have had is having to remove intestines and such. I had strictureplasty in 2001 which is what JDiane mentioned and that is the last time I had surgery for my Crohns. I had 8 strictures widened and hadnt had any problems since until 2 years ago and now. For me the Crohn's always comes back in the same area and same pain, symptoms. I know it is hard to know what to do next. For me in 2005 I had the Remicade on Thursday and by Saturday morning that same week I was hardly in any pain and able to eat and drink again. The doctors said it was a miracle that it worked that fast. I would imagine they will probably try more tests and meds if they will help first. It is so hard not knowing what to do next. I wish nothing but the best for you. Even though I have had this for over 20 years it always is a little different. The flares I have had in the last 10 years have been longer and complex than the first 10. Good luck and let us know how you are doing.
Posted 9/14/2007 8:24 PM (GMT 0)
I had TI stricure, I knew some day I would need surgery and was told by my ped GI that it is better to do when healthy rather than an emergency, the last time I saw her was 11 yrs ago, got too old for ped GI lol. My old GI (the adult one I had before my ordeal this yr) never mentioned Sx even after all of my tests etc. I ended up needing emergency Sx since my ileum perforated and I had many complications since I was not "cleaned out" prior to Sx.
Posted 9/15/2007 1:31 AM (GMT 0)
Chris, I'm facing the same dilemma - elective surgery vs. buying time with meds. I just had a small bowel follow-thru that showed approx. 20 cm stricture of the distal TI, the distal portion has a a string sign and there's "cobblestonning." Because I'm on Imuran and Entocort, I'm inclined to believe that it's due to scar tissue that wouldn't benefit from Humira or Remicade. Surgery is an option and I'm trying to get up the energy to do some due diligence research on the surgeon my GI recommended as well as asking around about other potential surgeons I would consider trusting. I better get moving on this before I'm off Entocort because I may feel like crap again soon. I know how you feel when you say you're confused. I've been stessing about this decision for almost two years. Dragonfly, I've read about all you've been through, appreciate you sharing your experience, and will keep that in mine as I battle with this decision. It sounds like you (Chris) are in really good hands - your doctor is actually going to review the CT scans? My GI has never done this, just relied on the radiologist's report. She sounds very thorough. Keep us posted.
Posted 9/15/2007 2:27 AM (GMT 0)

How do we know though if it is scar tissue or active chronic inflammation???  I am thinking that I should ask why don't we get more aggressive and try other drugs to get rid of inflammation and then repeat tests to see if is scar tissue.  Can they tell from a colonoscopy?  Also what is a small bowel follow through??  I thought you only developed scar tissue from surgery resections?  Do you think you still have inflammation.  I know it is still bad because of the pain and diarrhea.

Chris

Posted 9/15/2007 2:54 AM (GMT 0)
i guess besides trying anti imflammatories like prednisone to see if the inflammation dissappears there isnt a way to know? im surious about this too. i have a 10 sm stricture, its scarring but there WAS inflammation that got better on prednisone. now i just have the scarred portion left.

if it was me i would try the steriods first. i am all about preserving the intestines that i have and i heard that after you have surgery you are more likely to develop crohns in the same spot becasue if the scarring and because you are inviting more inflammation. but please dont quote me on that i may be way off the mark. either way i personally think that meds should be tried first rather than surgery unless it is so bad they are scared you are going to obstruct. thats what they are probably looking at. if it is too narrow, then you have a greater chance of obstructing and then you could perforate.

scar tissue can form wherever tissue has been inflamed. when there is prolonged inflammation eventually the tissue hardens and scars and thats when the passage narrows.

a small bowel follow through (SBFT) is a procedure where they give you various things to drink, like barium and chart the progress as it passes through your intestine. they take a lot of films and it took me a few hours to get it all done. its a really great tool to see how narrow your intestine may be and to see the condition of your intestine. the SBFT isnt bad really at all you just have to drink the stuff which can be unpleasant and you have to either walk or lay and wait inbetween films.

i hope this helps and i was as accruate as possible :)

bunny

Posted 9/15/2007 2:56 AM (GMT 0)

A small bowel followthrough (SBFT) is a whole series of x-rays. You drink barium and they photograph you every few minutes, until the stuff has worked its way from one end of your system to another. It's very effective in showing whether you have a stricture in your terminal ileum. There is, however, no way to tell whether the stricture is made up of inflammation and edema or scar tissue.

Scar tissue doesn't only result from ileal resections. If your ileum gets irritated and your immune response activates, you'll get inflammation. After bouts of inflammation, eventually you'll get all scarred up. As the above posters said, you may be able to alleviate inflammation with meds and diet, but, once you've got scar tissue, it stays there, permanently narrowing that area of your intestinal tract. Once you've developed scar tissue, you've greatly increased the likelihood that you'll need surgery eventually.

The best thing is to assume (hope!) that any stricture that shows up in the SBFT is inflammation and to try throwing meds at it (and trying a more restrictive, less irritating diet), so that it may heal. Interestingly enough, the severity of your symptoms (pain, diarrhea, nausea) may not necessary correspond to the severity of your stricture. But, believe me, if you ever have a complete ileal obstruction, you'll know--that's a whole different level of discomfort!

Posted 9/15/2007 3:01 AM (GMT 0)
I have severe strictures in my terminal illeum. Like you, I was initially told I would have to have surgery sooner or later, most likely sooner. The first year I was Dxed I had a few obstructions. Since then I tried 6mp and have been in remission for over 3 years. I still have the scars in my illeum and after scopes the pics look like very little should pass (but everything is liquid at that point so it works its way through), but I have no pain and still do not need surgery. The difference for me was that when there was inflammation on top of the scars I would have pain and obstructions. When meds cleared the inflammation the scars didn't matter. I hope it stays that way several more years. My GI has had other patients just as lucky. Since the risk of recurrence at the surgery site is so high, I've always sought to delay surgery. The results I've had with meds give me no reason to even consider it now. The only concession I had to make was giving up popcorn and nuts (though 3 years in a small amount of popcorn is back in my diet without problems)

Good luck in your decision. I just wanted you to know that even with major strictures it is possible, in some cases, to get into remission and lead a normal life without surgery.
Posted 9/15/2007 4:22 AM (GMT 0)
There has been a lot of great advice given to you. You will know the difference if you get obstructed. If you do wait until that point you may take away the option of having a laparoscopic surgery. A laparotomy would take a lot longer to heal and get back to normal.
I hope you are feeling better soon and make the best decision for you.
Posted 9/15/2007 4:03 PM (GMT 0)
You just don't need to have a stricture to have surgery of the TI. I had a weaking of the the wall of the TI and feces went into my blood stream and I almost died from the infection. Temp went up to 104 etc , wife got me to the ER just in time. I laid in the hosp for two weeks with an open wound while they pumped antiboitics into me to save my life. They took about a foot of my TI , I am still alive at 64 and been on remicade for (3+) years and get the max. If your Doc thinks you need a Lapy surgery, do it , its better than what happened to me. Or, if you dont feel like you trust this doc, get a second aopinion, do NOT wait too long. My my died of CD, same as happend to me, but she waited too long to go to the hospital and they could not save her. GOOD LUCK !
Posted 9/15/2007 4:28 PM (GMT 0)
Inflamed has given you really sound advice. These observations mirror my experience. By the time I was diagnosed on xray my TI was almost occuded. There was a nine inch string segment that looked pretty bad. Despite that, it was 15 years before my first resection. In retrospect, I probably left it a couple of years too long and ended up with many complications but for the majority of that period i was able to manage. In that time I probably had a half dozen obstructive episodes but they always cleared on their own within 12-18 hours.

I definitely think it was the best choice for me to manage my disease medically as long as possible. The decision to do surgery is often influenced by the patient's history. Given two bowels with the same degree of stricture, one patient might report being able to manage and maintain a decent quality of life while another is in misery and reports having a poor quality of life.

As for Kurt's experiences, bowel perforation is a complication of crohn's that can occur at anytime, but it usually doesn't happen in the absence of symptoms. People usually feel unwell in the lead up to a perforation. Usually they have been experiencing pain, fever, cramps and the general malaise of active disease. The pain and feeling of unwellness of perforation escalates quickly and is usually heralded by pain that rebounds(hurts more when you let go of pressure) and by an abdomen that demonstrates guarding when touched.

It is critical that we crohn's patients self-monitor our condition and take action when we notice a change in symptoms. I suspect that a lot of us have gotten into trouble because we ignored warning signs in the hopes that things would get better.

I think the hardest thing for me has always been making the decision that I need medical intervention.

Maybe you could ask your GI what signs or symptoms should set off the alarm bells.
Posted 9/15/2007 8:37 PM (GMT 0)
We considered surgery last winter (Jan/Feb) when nothing seemed to help get the inflammation down and I was on liquid only. Because the surgery isn't a walk in the park (even done labroscopicly - I can't spell that!), I sought out every last medical treatment I could before opting for it.

Thankfully, Humira worked and I avoided it.

I figure I'll have it done eventually but while I'm working FT and have other things on my plate, I am not going to elect for it unless I can't function anymore. Others may make the decision to beat it to the punch but I want to hold onto my intestines for as long as I can =) Plus, the surgery doesn't solve the problem and I'll likely be on teh same meds regardless.

I have done the tests and things are okay to leave as they are for now (I've only had the disease 3-4 years). I have obstructed several times but they moved on without surgical help.
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