** Songstress.....Would you mind taking out the quote in your sig it is a link to a site......
...Thanks for your co operation..I dont know if you knew that or not
...You can email me if you would like....LYN
Post Edited By Moderator (Howlyncat) : 11/16/2008 6:28:56 PM (GMT-7)
I have a stricture too, have had it for many years, and as ivy6 it doesn't really cause me a lot of trouble. The only thing I have to watch though is to peel all the fruits and veggies, I don't eat nuts, green salad etc, because they tend to cause blockages if they are stuck in the stricture. Sometimes when I eat something forbitten, I have pain near my belly button, because the food tries to pass through the stricture, but nothing major.
I know people who have been living with strictures for years.
I have had many strictures... I grow scar tissue like other people grow crab grass. It's true that strictures often don't show up well on CT scans, and an Upper GI Small Bowel Follow Thru has always been the most reliable test for me-but that's my body, so it may not be true for you. Whatever you do, don't, I repeat DO NOT, swallow the "little" GI camera if you suspect a stricture. It's not that little, and getting it back out can be a real drag.
Some things I experience when a stricture is becoming a problem for me are gurgling coming from a specific area of the bowel after eating, excessive belching, and changed bowel habits, and of course pain in that specific area. I can usually point right at it. It is best to watch what you eat, staying away from fibrous raw veggies, etc., but my experience has been that if the stricture narrows to 5cm or less there's nothing you can eat and you'd need to go liquid to avoid hospitalizations. Don't ask how I know. I just do. (It is kind of nice when all the ER docs and nurses at the local hospital know you so well they don't even have to ask what's wrong before ordering your meds and whisking you away to your favorite room. )
okay so I have been swamped and havent been able to get to a computer...thx for all the helpful replies....I think I relate to the last one. My bowels have been very very and I mean VERY...loud lately/thats why at first I suspected an obstruction until I finally started having some movement. Everytime I eat I get the umbilicus / belly button pain and very loud bowel sounds near that area. I actually feel bubbles and contents trying to move through the area.
but if you think a change of diet would help, I will probably try that first. He also suggested miralax for 2 weeks to try and see if that can make me go without all the pain (the other morning the pain had me puking nonstop because it was so excruciating..He thinks if the pain keeps up to go ahead with the smallbowel followthru. ugh...last time I had one it took 6 hrs to do because the barium wouldnt move through me easily
hopefully this one will be better...cross your fingers
Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength
Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Currently on Humira every 2wks, Pentasa, Entocort, Phenergan, Lomotil, Celexa, Lortab, Ambien, and new this week Zoloft.
I've had many bouts with problems regarding my stricture before which has left me in acute pain for around 5 hours or so then finally its passed. I'd say its happened about 10-15 times , all started when I was around 20 and now im 36. The last 2 times ive gone to the hospital for help, in future this is what I will do.
My most recent was in March 08 which for some reason I've never felt the same afterwards. Now I have constant loud noises and feel very distended and uncomfortable. I've tried Pred and Imuran ( high doses ) to no avail. In the next 2 weeks I will also be having a small bowel enema to see if my stricture has closed more.
Several years ago, I had a GI series with small bowel followthrough that showed that a 12" section of my small intestine was very narrow. My doctor put me on 6MP and a low fiber/low residue diet. Even though the symptoms continued, another followthrough two years later showed that the narrowing had disappeared--which meant that the stricture had been caused by inflammation and not yet by scar tissue. So I was lucky, at least that time.
Although you have to drink lots of barium for the small bowel followthrough, I really recommend the test, since it will show you clearly what's going on in your ileum. And the barium seems to improve a little every year--it used to be an incredible ordeal to try to drink the stuff; now it's just kind of yucky, but not hideous.
My thoughts are with you. I wish you much good luck.
I know when I have a stricture due to continous intestinal noise and bad cramps..I can't eat certain things like raw vegetables which really cause an issue..I have found a low residue diet very helpful for this issue.
Yes..It has been a sure sign for me..I will feel like vomiting before I go along with it..Scar tissue vs inflammation is what those tests can tell you and can be a necessary evil. I just hate all those tests. I start seeing the dollar signs of what I am going to owe afterward, and I have half way decent insurance..
After reading the posts, just wanted to note 2 pre-surgery episodes (I have had 4 major surgeries total) where partial obstructions were causing me to be hospitalized monthly. During those 2 episodes the local hospital could not find the problem with UP GI/small bowel follow-thrus or CT scans. So I went to the Mayo (I have a relationship there because I used to live in Rochester) and their CT scans picked up 4 major strictures from scar tissue the first time, and 2 the second time, both times requiring surgery. My GI here now recommends that I fly out to Rochester for all my scans. The Mayo has superior equipment and the process was slightly different also. And the best thing? The docs at the Mayo might tell me that they haven't found the problem yet with the tests performed so far, but they never tell me there isn't a problem. They just keep looking. They know that Crohn's is complicated and not all patients exhibit the same symptoms, and they really listen to me. My problem locally is not with my GI doc, he's great, but your typical radiologist working in some run-of-the-mill hospital doesn't see Crohn's, let alone complicated cases of it, very often. I think they're often looking for the textbook signs associated with Crohn's, thus missing the real problem. I once had a young radiologist tell me that my terminal ileum looked fine, and since "that is where Crohn's presents" (his exact words) everything was great. Never mind that my entire terminal ileum had been removed 7 years before, and my Crohn's was currently having a heyday destroying my upper jejunum.
Also, about the thin bowel movement - I had that problem for awhile, and it turned out to be a scar tissue problem also. My first surgery 16 years ago involved removing the terminal ileum and ceucum (sp?) and reattaching the small bowel to my colon. Over time scar tissue grew at that resection site to the point they could not even get a pediatric colonoscopy camera through it and into the small bowel (I learned that, at least at the Mayo, during a colonoscopy they try to continue up into the small bowel as far as possible). Last year they surgically resected that area and I am totally fine now (yeah!). This problem was never picked up during a CT scan or a SBFT, even at the Mayo. At least on me it's a difficult place to get to other than with a colonoscopy (I've also had that area ballooned once during a colonoscopy, and I showed some improvement but it didn't last long.).
Hope this info helps -- most importantly don't give up. Be sure to drink your protein drinks!
I agree, surgery is always the last choice, but sometimes it becomes no choice at all and that's when it's really no fun. I got talked into trying the GI camera last year because, like you, they just couldn't find the stricture I was sure was there. I spent the holidays from Thanksgiving day through January in the hospital, having surgery and recovering from surgery to remove said camera and bisect the stricture it got hung up in. Any other time of the year would have been fine, but when you have kids you want to be able to make Christmas memorable. And not because all your gifts were ordered online in a post-surgery drug-induced state and didn't show up until 2 days after.
Anyway, what I've learned from this journey is to trust myself and my intuition about what's going on in my body. And it's okay to say no to the docs, and to insist on better care.
By the way, I noticed on your post that you're on prednisone, but not one of the newer tnf inhibitors... just wondering if you've every tried any. Prednisone always helped my inflammation short-term, but my body always adjusted to it pretty quickly and it was just like I wasn't taking it at all (except for the hideous side effects-they stayed). I'm just wondering if they increase your prednisone (I know, dirty words), or you try remicade, or something along those lines, you might be able to tell if your problem is more related to inflammation versus hard stricture. I mention remicade because I had pretty quick results (within days) from it, as opposed to Humira which takes a little longer to kick in. Both worked for me, but I eventually had an allergic response to the remicade.