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Crohn's Disease Forum » General IBD Discussion » Living with small-bowel strictures...


02-23-2011, 10:01 AM   #1
Tami Lynn
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Living with small-bowel strictures...

Hello everyone! Wow - it's so great to see that this forum is growing and still going strong! It's been a long time since I last dropped by. I really should come by more often.

A quick update on my situation for anyone who knows or remembers me from the beginning.

In 2002 I had my last bowel resection: only this time it wasn't for active Crohns, but to remove a tennis-ball sized mass that was almost completely obstructing the lumen. After surgery, the surgeon told me that there were two more strictures that he didn't remove. He was trying to conserve as much small bowel as possible and avoid giving me short-bowel syndrome. He did say that more than likely the strictures would need to be removed surgically at some point in the future.

Well, those strictures are still there (alive and well) and have caused me problems off and on with partial bowel obstructions for these past 8+ years. Honestly, my good days have seemed to outweigh my bad ones for a long time now, so I really can't complain. I don't have any symptoms of active Crohns and that is a blessing I cannot even describe! However, after having my most recent CT enterography, my GI suggested that a visit with the surgeon was in order.

The bottom line, after speaking with the surgeon, is he would like me to choose to have an elective resection before an incident caused by the strictures becomes a "major incident". More or less he thinks I should call the shots rather than allow my health to dictate what needs to be done. He stressed that allowing my health to deteriorate would make surgery and recovery all the more difficult, and that timing was key. He also said that he didn't advocate "rushing" into surgery...so what a precarious matter that has left me with in respects to trying to decide when "the right" time is.

Since the decline has been so gradual, sometimes it's difficult to access when "it's time" to act. He said to watch my weight and to access the situation by determining how much I have to alter my diet to avoid an obstructive incident. I told him I would start to blog about it, so I'll be able to guage the situation better over time.

I really don't want to have surgery again! -ugh- I just started going to school and am trying to have a career at 40+ years of age, now that my children are grown.

I'm not sure what to do, but I did end up having an "incident" just the other night and have noticed a progressive decline recently. Why did this all seem to coincide with my visit with the surgeon?! I swear I must've cursed myself by going to see the doctor! But I will hope against hope that things will resolve as they have in the past and that I will be able to maintain the status quo through diet, rest and moderation. My goal is to hold out for AT LEAST the next 2-3 years until I can graduate from court reporting school. Let's hope and pray I can make it that long!

My daughter, Alyssa, who was diagnosed with CD in 2007 at the age of 16, got married in May of 2010. She had her first re-section for Crohns in October of 2009 and is currently taking Pentasa and Remicade to try to control her symptoms.

For anyone out there who has lived with strictures caused by Crohns, do you know if it's possible to go on indefinitely living with them? My surgeon claims that I will most certainly need surgery as time goes on, and that the strictures will eventually get worse and cause a complete obstruction. But, if I'm not having any active inflammation from Crohns, I don't understand why this has to be. I feel like I am caught in a vicious cycle on the surgical merry-go-round. When does it ever end?!

I'd love to hear from people who have experience with the type of Crohns that causes strictures - especially small bowel strictures and to hear what works for them. The way the doctor explained it to me, there are different types of Crohns. Some people get fistulas and abscesses and some get stricture-causing CD.

Thanks for letting me ramble on...
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"The only thing worse than being diagnosed with Crohn's disease 25 years ago, was when my daughter got diagnosed with this dreaded disease 4 years ago and having to stand by and watch her suffer with the same things I've dealt with for most of my life and feeling so utterly helpless to do anything about it!"
03-03-2013, 08:03 AM   #2
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Anyway this forum is still open? Am wanting to know if there is a type of crohns that just causes strictures?
03-03-2013, 08:12 AM   #3
nogutsnoglory
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All types of Crohn's can cause strictures, fistulas, etc. Some get them more than others but the disease puts us all at risk.
03-03-2013, 08:42 AM   #4
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I found this forum by doing a random search. My 24 year old daughter keeps experiencing intestinal strictures and blockage. A test was does for Crohn's but her Dr. Said it was negative. Was curious if the test could be wrong or if anyone else had experienced this.
03-03-2013, 11:00 AM   #5
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There may be other diseases that cause stricture but I don't know. Did she see a gastroenterologist? What test was done?

A colonoscopy or imaging would be critical for an accurate IBD diagnosis.
03-03-2013, 11:22 AM   #6
Sarah50
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I found this forum by doing a random search. My 24 year old daughter keeps experiencing intestinal strictures and blockage. A test was does for Crohn's but her Dr. Said it was negative. Was curious if the test could be wrong or if anyone else had experienced this.
I agree with the other poster, that your daughter needs a colonoscopy to determine whether it's crohn's or something else. Also, a "Upper and lower GI barium x-ray can show if it's crohn's or something else. When I had the GI barium x-ray, the radiologist said I had a segment of stricturing in my small intestine that definitely showed Crohn's disease. Do you know if the strictures are in the large or small bowel? What kind of test was done and by what kind of doctor?

My doctor put me on a low residue diet - pretty much for life - because of the stricturing - that, along with putting me on Asacol, I've pretty much been in remission since, So I'm keeping on this diet ... since it works and to prevent surgery.

Here's a link about bowel obstruction and what can cause it. But if you google "bowel stricture", I've only seen it caused by Crohn's. Good luck.

http://en.wikipedia.org/wiki/Bowel_obstruction
03-03-2013, 12:05 PM   #7
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You can also get obstructions from external adhesions around the bowel caused by abdominal surgeries of any kind, endometriosis, pelvic inflammatory disease, and others. I have had several partial obstructions from external adhesions over the years.
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03-03-2013, 12:07 PM   #8
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Oops! Just saw your link, Sarah. Sorry to repeat.
03-03-2013, 01:31 PM   #9
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Oops! Just saw your link, Sarah. Sorry to repeat.
No problem!! Great info!!
03-03-2013, 01:53 PM   #10
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Appreciate all the feedback. My daughter has had all the tests: colonoscopy; upper/lower GI; high resolution scans; and Prometheus test. Her gastroenterologist said it first appeared to be crohn's in small intestine near ileum. Everything came back negative. Her symptoms are atypical in that she suffers from constipation and no diarrhea. After 9 days in hospital, and 9 months seeing 3 specialists, we are stumped. She sticks to soft gastro diet and all is fine. But she cannot eat much. Now she is looking into gluten intolerance. Just would like to know if anyone has ever had these symptoms. -thanks
03-03-2013, 01:56 PM   #11
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I really have no clue than, maybe Judith can help.
03-03-2013, 04:00 PM   #12
Sarah50
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Appreciate all the feedback. My daughter has had all the tests: colonoscopy; upper/lower GI; high resolution scans; and Prometheus test. Her gastroenterologist said it first appeared to be crohn's in small intestine near ileum. Everything came back negative. Her symptoms are atypical in that she suffers from constipation and no diarrhea. After 9 days in hospital, and 9 months seeing 3 specialists, we are stumped. She sticks to soft gastro diet and all is fine. But she cannot eat much. Now she is looking into gluten intolerance. Just would like to know if anyone has ever had these symptoms. -thanks
I didn't have diarrhea nor do I with my crohn's. I had some constipation before I was diagnosed but not anymore. What other symptoms, if any, does she have? You said the doctor said she had a stricture in the intestine and blockage. I'm wondering how he ruled out crohn's since he thought she had it in the small intestine near the ileum - that's where mine is. I posted a link below to "possible causes of bowel stricturing" that I found.

Here's a link about strictures and diet and a little bit from the diet:

"If you have a narrowing or stricture in your small bowel you can have symptoms of bloating, feeling sick, poor appetite or pain. You can help these symptoms by changing your diet to avoid foods that are difficult to digest and by choosing foods that pass through the narrowing more easily."

"In some people with Crohn?s disease, the small intestine may also become very narrowed. A low-residue diet is a diet in which fiber and other foods that are harder for your body to digest are restricted. Fiber is made up of plant material that cannot be completely digested by the body. High-fiber foods include whole-grain breads and cereals, nuts, seeds, and raw or dried fruits and vegetables.

Residue refers to undigested foods, including fiber, that make up stool. If intestinal walls are inflamed or damaged, digestion and absorption of nutrients and water may be impaired, depending on the location of disease activity."

http://uvahealth.com/services/digest...due_diet_3.pdf


Here's a link I found from googling "possible causes for bowel strictures"

http://en.diagnosispro.com/different...14857-154.html
03-03-2013, 05:02 PM   #13
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Thanks so much for all the info. I am going to look into it.
03-03-2013, 05:04 PM   #14
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Funny thing is, the foods not allowed on low residue diet, are exactly what she used to live off of.
03-03-2013, 05:34 PM   #15
Sarah50
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Funny thing is, the foods not allowed on low residue diet, are exactly what she used to live off of.
I used to live off of the same food as your daughter before my diagnosis with crohns - high fiber bread and cereal, lots of salads with raw veggies. Not anymore....... it's white bread, no cereal except cream of wheat and the only raw veggies I can have that I just experimented with because they were on someone's low residue diet are butterleaf lettuce (soft and low fiber) and English cucumbers (peel the skin and they have no seeds) and mushrooms. Other than that, it's cooked veggies and the only ones listed on the low residue diet.
03-03-2013, 11:02 PM   #16
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Hello everyone! Wow - it's so great to see that this forum is growing and still going strong! It's been a long time since I last dropped by. I really should come by more often.

A quick update on my situation for anyone who knows or remembers me from the beginning.

In 2002 I had my last bowel resection: only this time it wasn't for active Crohns, but to remove a tennis-ball sized mass that was almost completely obstructing the lumen. After surgery, the surgeon told me that there were two more strictures that he didn't remove. He was trying to conserve as much small bowel as possible and avoid giving me short-bowel syndrome. He did say that more than likely the strictures would need to be removed surgically at some point in the future.

Well, those strictures are still there (alive and well) and have caused me problems off and on with partial bowel obstructions for these past 8+ years. Honestly, my good days have seemed to outweigh my bad ones for a long time now, so I really can't complain. I don't have any symptoms of active Crohns and that is a blessing I cannot even describe! However, after having my most recent CT enterography, my GI suggested that a visit with the surgeon was in order.

The bottom line, after speaking with the surgeon, is he would like me to choose to have an elective resection before an incident caused by the strictures becomes a "major incident". More or less he thinks I should call the shots rather than allow my health to dictate what needs to be done. He stressed that allowing my health to deteriorate would make surgery and recovery all the more difficult, and that timing was key. He also said that he didn't advocate "rushing" into surgery...so what a precarious matter that has left me with in respects to trying to decide when "the right" time is.

Since the decline has been so gradual, sometimes it's difficult to access when "it's time" to act. He said to watch my weight and to access the situation by determining how much I have to alter my diet to avoid an obstructive incident. I told him I would start to blog about it, so I'll be able to guage the situation better over time.

I really don't want to have surgery again! -ugh- I just started going to school and am trying to have a career at 40+ years of age, now that my children are grown.

I'm not sure what to do, but I did end up having an "incident" just the other night and have noticed a progressive decline recently. Why did this all seem to coincide with my visit with the surgeon?! I swear I must've cursed myself by going to see the doctor! But I will hope against hope that things will resolve as they have in the past and that I will be able to maintain the status quo through diet, rest and moderation. My goal is to hold out for AT LEAST the next 2-3 years until I can graduate from court reporting school. Let's hope and pray I can make it that long!

My daughter, Alyssa, who was diagnosed with CD in 2007 at the age of 16, got married in May of 2010. She had her first re-section for Crohns in October of 2009 and is currently taking Pentasa and Remicade to try to control her symptoms.

For anyone out there who has lived with strictures caused by Crohns, do you know if it's possible to go on indefinitely living with them? My surgeon claims that I will most certainly need surgery as time goes on, and that the strictures will eventually get worse and cause a complete obstruction. But, if I'm not having any active inflammation from Crohns, I don't understand why this has to be. I feel like I am caught in a vicious cycle on the surgical merry-go-round. When does it ever end?!

I'd love to hear from people who have experience with the type of Crohns that causes strictures - especially small bowel strictures and to hear what works for them. The way the doctor explained it to me, there are different types of Crohns. Some people get fistulas and abscesses and some get stricture-causing CD.

Thanks for letting me ramble on...
Tami Lynn,
It sounds like you have a difficult decision on your hands. There are different types of Crohn's. Some people have fistulas, abscesses, or strictures, some people have all three while others have none. Crohn's is extremely complicated and researchers are still trying to figure out everything that causes Crohn's and its symptoms.

It is a difficult decision to make because obviously you want to delay surgery for as long as possible, but you will heal more quickly and with less complications if you are healthy.

A second opinion might be beneficial if you are able.
03-03-2013, 11:26 PM   #17
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Appreciate all the feedback. My daughter has had all the tests: colonoscopy; upper/lower GI; high resolution scans; and Prometheus test. Her gastroenterologist said it first appeared to be crohn's in small intestine near ileum. Everything came back negative. Her symptoms are atypical in that she suffers from constipation and no diarrhea. After 9 days in hospital, and 9 months seeing 3 specialists, we are stumped. She sticks to soft gastro diet and all is fine. But she cannot eat much. Now she is looking into gluten intolerance. Just would like to know if anyone has ever had these symptoms. -thanks

Appreciate all the feedback. My daughter has had all the tests: colonoscopy; upper/lower GI; high resolution scans; and Prometheus test. Her gastroenterologist said it first appeared to be crohn's in small intestine near ileum. Everything came back negative. Her symptoms are atypical in that she suffers from constipation and no diarrhea. After 9 days in hospital, and 9 months seeing 3 specialists, we are stumped. She sticks to soft gastro diet and all is fine. But she cannot eat much. Now she is looking into gluten intolerance. Just would like to know if anyone has ever had these symptoms. -thanks
Crohn's will often display "skip" areas of disease in her GI series, while other diseases will show confluent areas of disease in the GI tract.

Her Prometheus test may have come back negative but she could still have Crohn's disease. The Prometheus test looks for certain gene mutations that are most often found in persons with Crohn's. However, she can have a form of Crohn's that is not tested for using the Prometheus diagnostic.

If your daughter suffers from Gluten intolerance (she can have both Crohn's and Celiac disease by the way), she may also be Lactose (milk sugar) intolerant. If you try a Gluten free diet, I would suggest a Gluten AND Lactose free diet rather than just a Gluten free diet to test if she feels better.

The enzyme that breaks down the milk sugar called Lactose is made in a part of the intestine damaged by Gluten intake in persons with Celiac Disease. As a result, Celiac Disease (especially in those not on a strict Gluten-free diet) can also cause Lactose intolerance.

These Wiki pages may help too:
Lactose
Celiac disease

I hope it helps and I hope your daughter feels better soon.
03-04-2013, 05:42 PM   #18
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I have stricturing in the ileum and a fistula. The doctor seems to think Remicade will help with them both, so I'm wondering why you weren't put on medication. In my case we're hoping that will keep me from having to have another surgery.
08-31-2013, 02:26 AM   #19
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Hi, I'm new to the Forum and stumbled across this because I'm dragging and it has been almost week since my partial bowel obstruction. I don't know if the previous posters will see this, but I wanted to share my story with the hope of helping ease the suffering of another. I first thought I had the flu when I was 21. It took a year, many tests, surgery to remove my gall bladder and a colonoscopy for a GI to guess that I had small bowel Crohn's, even though he couldn't see it. Two weeks later I graduated from college and moved to Chicago. My disease is triggered by stress, over-eating (i.e. Thanksgiving) and eating too much of a bad thing (roughage). I found a wonderful GI who kept a very close eye on me, but no one could prove that it was definitely Crohn's, until...4 1/2 years after my first flare, I swallowed the pill endoscopy as part of a study. Despite the countless small bowel series, CT scans and I don't know what else, we could finally see the strictures live on the doc's computer screen. That was a good day - I could finally say I had small bowel Crohn's with strictures. The bad news was that the battery died before the pill ever left my small intestine. It wasn't until 8 months later that we discovered it had gotten stuck on a very tight stricture, therefore I was facing my first surgery. BTW...I had been on every drug, except Humira, by this time. My beloved pill cam ended up being in my body longer than it had been in anyone else's body in the entire world, so I had that going for me. My strictures looked NOTHING like anything they had ever seen, but there are a few VERY important things to note:

1. they are seeing my rare strictures in people who do NOT have IBD, but who have a history of heavy ibuprofen usage (possibly all NSAIDS...I can't remember)

2. MR Enterographies have turned out to be the best way to monitor the development of strictures and prior to my last and 3rd surgery, I even swallowed a DISSOLVABLE pill cam to see just how tight the stricture was.

3. I hate to be Debbie Downer, but I was taught that strictures aren't to be taken lightly. If waste can't properly move through your system, the toxins will poison you. Also, if your bowel kinks due to scar tissue, or for any other reason, it can cut off the blood supply and you must get to an OR ASAP!! I just don't know if you would know the difference in the level of pain between a stricture and a kink.

4. Everyone's disease is different and my major problem is strictures, though constipation is a huge problem, as well. I have never had fissures, etc. AND my strictures always have appeared in new locations in my small bowel, which isn't as typical.

5. Find the best surgeon you can. I love mine at Northwestern, in Chicago, and have even gone back after moving back to KC. I have even considered going to the Cleveland Clinic, considered to be one of the best places for bowel surgery, although my surgeon trained there.

6. I have had approximately 20 strictures operated on and still have 100% of my bowel. Dr. Halverson has done what are called strictureplasties. Google it. It is amazingly simple, yet so effective, at least for me.

Good luck to everyone and don't hesitate to push docs until an answer is found. That is what they get paid to do. Having an unusual form of CD, along with a variety of other health issues, I have found that a research hospital is the best place for me. Those docs are more likely to be up-to-date on cutting edge meds, techniques, etc.

I'm sorry for rambling, but I hope at least one person will have a better go at it because of the lessons I have learned (which go way beyond what I could type here!).

Good Luck!
Dustin
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