My daughter has a stricture 13 cm long. She is currently taking Pentasa. Has anyone had a stricture improve without surgery? Has anyone just taken medicine and not had surgery and just lived with the stricture? The stricture was very narrow at the time of diagnosis. The doctor just now mentioned Prednisone, so I guess that is the next step. Thank you in advance for your replies!
Has anyone ever had a stricture improve without surgery?
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I'm not sure if that's a long stricture, but it sounds like it. Some people have strictures and just live with them. Some people have their strictures "baloon dilated" during colonoscopies and that seems to be effective for a while (seems like it usually "wears off" by about a year).
But if the stricture is severely narrow and long, surgery may be the best option. Severe enough ones left untreated can lead to awful things like obstructions (which end in surgery anyway).
But if the stricture is severely narrow and long, surgery may be the best option. Severe enough ones left untreated can lead to awful things like obstructions (which end in surgery anyway).
Terriernut
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That's 5 inches 11 centimeters. Thats quite a stricture! Balloon dilatation, has that been considered? Is it scar tissue that has done this?
Its the worry of perforation that concerns me with that big of a stricture.
Its the worry of perforation that concerns me with that big of a stricture.
Angrybird
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The first narrowing I had about 5-6yrs ago was sorted during colonoscopy. The second one was too bad and within 4 months it was out, it was so I couldn't eat food in the month leading up to the op so I was on shakes. The surgeon did confirm that the bit they chopped out was nearly completly closed so it was a good thing that it had come out. I agree that 13cm seems fairly big and whilst the pred will help with any inflammation that is in it I can't see how this will sort the scarring as once it's there it stays there. Not the most positive of responses I'm afraid. How quickly will you be seeing the doc again to see if the pred as done anything?
I guess I was wrong. It is 15 cm instead of 13 and the doctor said strictureplasty is off the table. He said they cannot tell if it is scar tissue causing the stricture or inflammation. Thanks for your response!
Oddly enough, she was just diagnosed with CD four months ago when they found the stricture and she had a near bowel obstruction. She was in the hospital 3 days and released with a prescription for Pentasa. Now the doctor says he thinks she should have surgery, but no further tests have been done to see if there is improvement from the Pentasa. My daughter told him she would like to try Prednisone first and then see if there is improvement. We don't know if the stricture is from scarring or inflammation. The doctor said he doesn't know. Thank you for your response!
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Hi Kem53, I'm in the exactly the same boat. I was in hospital twice in the month of october with bowel obstructions. In hospital I had morphine and IV steriods for 6 days then was discharged with Prednisone 45mg tapering 5mg every week, I got down to about 20mg and then had another blockage and was admitted to hospital again with more IV steriods, sent home again with 45mg of Pred. I had a CT scan that showed a stricture, again the doctors couldn't really say if its inflammation or scar tissue. In the months of Dec and Jan I had 4 more blockages, my GI has me on Remicade now to see if that can make any difference, so far Ive had 1 infusion. He said if I don't see any improvement after 2 its surgery time. At the moment I'm only having soup, fish and potato. I really struggle with constant bloating too. I've already had 1 bowel resection due to obstructions 3 years ago so Im really depressed its happening again so soon. Prior to my first surgery I went 15 years living with a stricture in which I had about 10 obstructions during that time but being young and dumb went throught the excruciating pain. I hate these strictures and in my experience once they come they are so bloody hard to get rid.
How do you know she had a near bowel obstruction, did she have pain?
Thank you.
How do you know she had a near bowel obstruction, did she have pain?
Thank you.
I have been living with my second stricture for the past 6 months and just ended up having my second resection. All of the doctors I consulted (second and third opinions on drugs and treatment) thought that strictures are non-reversible. There is a treatment called double balloon enteroscopy where they can try and "open" up the stricture but it is a risky procedure if they have to go deep into the intestine due to possible puncturing of the intestine. I was also on Pentasa for the last 3 years but apparently it was not helping the prevention of strictures. Things that I tried to help live with the stricture included eating smaller meals more frequently, eating soft food, and staying away from any food that might cause a flare, etc. My last stricture opening was less than 2 cm so the surgeon recommended surgery even though I was in no pain but I could tell things were not 'processing' very well. Best of luck....
Hi I had a ft long stricture which they tried to heal with pentasa and steroids for 6 months and although I felt a bit better when I had my review with the surgeon he said that the tissue was fibrosed and would never heal with meds and strictioPlasty surgery wasn't an option. The risk of perforation etc is very high when it is damaged like that so the best option was to have an elective resection. I was surprised at first and dreaded the thought of surgery however I also know the risks of having damaged tissue inside. It wasn't an option though the surgeon said 100% resection was the only answer due to the extent of inflammation. That was a yr ago and so far so good no complications and I haven't needed meds (yet) since surgery. Good luck but try and get a few opinions for ease of mind that's what I did.
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Archie, please be careful with no maintenace meds after surgery, my GI thought that was a good idea for me at the time. I went without meds for 2 years and then when I had symptoms it was to late. I really wished I listened to what people said on here after my surgery.
Good luck.
Thanks for advise I do appreciate it and I have no probs taking meds but so far both my surgeon and GI haven't suggested any so I'm just going along with them. I am not refusing them and never would and I certainly wouldn't recommend anyone else to go med free it's just the advise I've been given so far mYbe it's because I didnt have any symptoms until last year. My surgeon and gp are very good and keep checking me every 6 months and if anything changes then yes they will give me maintenance meds but my GI discharged me straight after the surgery (which I thought was a bit abrupt!!) When did your symptoms return and what meds ru on now? I find it all a bit confusing as I have odd days of symptoms then have long periods of being great but I don't want to mistake the odd bad day as the start of a flare.
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I'm also from the Uk Archie and I'll like to think my GI and surgeon are some of the best in the country. After not needing surgery for some 15 years I honestly thought I had a mild case of Crohns. However 4 weeks after my resection I met with my GI and surgeon together which the surgeon explained that he had removed the narrowing and diseased portion and said I didn't need to take medication because there was no disease to treat. I too had a ileocecal operation. The GI said he will do a check colonoscopy in 6 months time to see if it was returning.. After about 2 months or so after the operation bloating starting to return...
Thats when I saw my GI in which he thought I had IBS on top of Crohns, the 6 month check colonoscopy showed no Inflammation and a wide anastomosis. All good.
The bloating continued after that in which i put down to IBS like he said. Every time I saw him I mentioned how uncomfortable I was feeling. He then place me on a diet which is called the LOFFLEX diet. Basically its an elimination diet where you add 1 food item every few days but still I had no relieve after the month.
fast forwad to 2 years after the Operation I had another colonoscopy and this time Inflammation and narrowing were seen on the scope. He then place me on 3 months of Budesonide and 125mg 6mp, 4 months after that I was having the evil obstructions. Now after 2 hosptial stays the consultants are talking about surgery to remove the stricture. At the moment ive been placed on Remicade and had only 1 infusion and if its not improved its another resection.
Never in my wildest dreams did I ever think I would need Remicade or another surgery.
I remember posting on a forum and telling others that I had been taken off all meds, I must of got 20 replies telling me to be careful but guess what?? I believed my top GI new best!!
What ever path you choose Archie I wish you well.....
Thats when I saw my GI in which he thought I had IBS on top of Crohns, the 6 month check colonoscopy showed no Inflammation and a wide anastomosis. All good.
The bloating continued after that in which i put down to IBS like he said. Every time I saw him I mentioned how uncomfortable I was feeling. He then place me on a diet which is called the LOFFLEX diet. Basically its an elimination diet where you add 1 food item every few days but still I had no relieve after the month.
fast forwad to 2 years after the Operation I had another colonoscopy and this time Inflammation and narrowing were seen on the scope. He then place me on 3 months of Budesonide and 125mg 6mp, 4 months after that I was having the evil obstructions. Now after 2 hosptial stays the consultants are talking about surgery to remove the stricture. At the moment ive been placed on Remicade and had only 1 infusion and if its not improved its another resection.
Never in my wildest dreams did I ever think I would need Remicade or another surgery.
I remember posting on a forum and telling others that I had been taken off all meds, I must of got 20 replies telling me to be careful but guess what?? I believed my top GI new best!!
What ever path you choose Archie I wish you well.....
Wow, spiceman, You have been through a lot and I feel really badly for you. This is a tough road to watch my daughter travel as well. You asked how we knew she had a near bowel obstruction. She had been sick with vomiting and terrible reflux for about 10 days. She thought she might have the flu, but I told her it didn't act like a flu bug. She started having stabbing pains in her stomach and I took her to the doctor. He sent her for a CT scan where they found a softball size mass of inflammation. She was hospitalized and they did a colonoscopy and small bowel followthrough. This is when they said she had a very narrow opening in her small bowel and that it was a stricture. This is also when she was diagnosed with CD. About three years ago I went with her to my gastroenterologist and told him that we thought she had CD. She had many of the signs and symptoms, including pain after eating. Fortunately, she doesn't have chronic diarrhea. He dismissed us and told us that she didn't need a colonoscopy and that she probably had IBS. She got down to 97 pounds on a 5'7" frame last year, which was frightening. She drank GNC's Weight Gainer 2000 Gold and got up to 138 pounds. We went to many doctors and none diagnosed it. My mother has ulcerative colitis and I have indeterminate colitis, which is what we emphasized to my GI. I've read about a lot of people going a long time before their diagnosis.
I had a fairly extensive stricture right side a few years after I was dx in my teens, but to my doc's surprise it disappeared over the course of a couple years, I can't remember the meds I was on as it was over 20 years ago but it was nothing too strong probably a mesalazine like pentasa, they came to the conclusion that my growing body had made room, at my first scope the GI said my colon was 1 1/2 times longer than the average he had seen and that it was looped back on itself several times.
If your doc has suggested preds it is probably inflammation that has caused stricture, hopefully meds will sort this out for your daughter.
Gwen xxx
If your doc has suggested preds it is probably inflammation that has caused stricture, hopefully meds will sort this out for your daughter.
Gwen xxx
The doctor actually told her to have surgery for the stricture after just 4 months on Pentasa and no steroids. There were no followup tests to show whether the stricture is lessening or not. He is basing this on her symptoms since she is in a flare. She did just go to the emergency room where they did an x-ray and said she doesn't have an obstruction. She asked if she could take steroids and see if that does any good. We'd really like to repeat the colonoscopy and small bowel follow through and see if there is improvement in the inflammation and stricture but the GI said it isn't necessary because she just had those tests 4 months ago. That was when she was diagnosed and before treatment, so I am not sure what harm there would be in seeing in the Pentasa has improved her condition at all.
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If you're not happy with your doctor's suggestions by all means seek a second opinion. If you both don't want her to have surgery, there is nothing wrong with attempting every other option you consider viable. Surgery is one of those things that you can't go back on, and if she's not in any immediate danger putting it off to explore other possibilities should be fine.
If the doctor says he doesn't know if it's inflammation or scarring there is absolutely no reason not to try the Prednisone and see how she responds.
I hope you find a treatment for her going forward that you are both comfortable with and that is effective. Sometimes we have to go out of our comfort zones to treat this disease, but it's usually worthwhile. Good luck.
If the doctor says he doesn't know if it's inflammation or scarring there is absolutely no reason not to try the Prednisone and see how she responds.
I hope you find a treatment for her going forward that you are both comfortable with and that is effective. Sometimes we have to go out of our comfort zones to treat this disease, but it's usually worthwhile. Good luck.
Hi kem53 has your daughter had repeat bloods to show if inflammatory markers have improved with meds? I agree she needs to have some retesting to see if there has been an improvement.
Thanks spiceman for the advice I'll def take it up with the consultant in the next couple of weeks as I thought I was having symptoms of IBS and after hearing your story maybe they are signs of something more going on than I thought.
Thanks spiceman for the advice I'll def take it up with the consultant in the next couple of weeks as I thought I was having symptoms of IBS and after hearing your story maybe they are signs of something more going on than I thought.
Hi archie, she did have repeat blood work at the emergency room. They said there were only low inflammatory markers, but that is also what they said when she was hospitalized and diagnosed with Crohn's and a near bowel obstruction. I think she would need another colonoscopy or small bowel followthrough to see how she is doing.
DustyKat
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Hey Kem,
Prior to any surgery being done there should be current CT or MRI done so the surgeon has some idea of what they are dealing with before they operate.
Pentasa is a mild medication and assuming there are no acute complications going on then there is plenty of room for movement as far as meds is concerned, Prednisone included. As far as the stricture goes, if it is scar tissue then nothing will change that but if it is as a result of inflammation only then yes, it should resolve with treatment.
A colonoscopy will only be of limited value with small bowel involvement and a GI shouldn't push through the area if it is inflamed so a SBFT or CT/MR Enterogram should give you a better idea of exactly how much narrowing and how much bowel is involved. Treat with steroids if suitable and then follow up with a CT/MRI to gauge the response.
If the bloods aren't indicative of what is going on then look to her symptoms to give you some idea of what is going on. I have one child whose bloods reflect absolutely everything and the other in which bloods tell me nothing.
Good luck!
Dusty. xxx
Prior to any surgery being done there should be current CT or MRI done so the surgeon has some idea of what they are dealing with before they operate.
Pentasa is a mild medication and assuming there are no acute complications going on then there is plenty of room for movement as far as meds is concerned, Prednisone included. As far as the stricture goes, if it is scar tissue then nothing will change that but if it is as a result of inflammation only then yes, it should resolve with treatment.
A colonoscopy will only be of limited value with small bowel involvement and a GI shouldn't push through the area if it is inflamed so a SBFT or CT/MR Enterogram should give you a better idea of exactly how much narrowing and how much bowel is involved. Treat with steroids if suitable and then follow up with a CT/MRI to gauge the response.
If the bloods aren't indicative of what is going on then look to her symptoms to give you some idea of what is going on. I have one child whose bloods reflect absolutely everything and the other in which bloods tell me nothing.
Good luck!
Dusty. xxx
Thanks DustyKat, we are still trying to figure out the results of her prior x-ray. The doctor said that she had a softball size mass of inflammation at the time, so we assume the stricture could be inflammation, but we really don't know. He put her on Pentasa for four months and now, we no further testing, he is pushing for surgery because of the stricture. He told her she could try steroids, but he doesn't suggest it. It just seems like he would do some further testing to see how well the inflammation has responded to the Pentasa before going to surgery. My daughter has had an increase in symptoms over the course of a few days, but we assume with active Crohn's you will have some good and some very bad days. This is all new to us.
