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2 strictures now - msg for April2 et al
Hi April, and anyone else able to give some insight. I had an MRI back in Nov 2007 due to an endoscopy showing a stricture in my small intestine, gastro thought as I had too much ionising radiotherapy with breast cancer, I should have the MRI, with contrast dye. Socialised medicine here and no feedback until I wrote to my breast cancer surgeon about a problem late Dec 2007 and copied the gastro. Gastro rang me days later (only 2nd time in 5 yrs) and said he had looked at the scan on the hospital computer, which showed another stricture but was waiting for the written report. Saw the bc surgeon within a week, referred me to a professor of endocrinoloy, whom I am seeing next Monday, due to 2 fractures in my feet, bone density loss due to steroids, and now Arimidex to prevent further breast cancer, but does not protect the bones. An absolute minefield.I am on self injected methotrexate weekly for Crohn's.
This week I rang the IBD specialist nurse, told her I now have blood in my stool and black coffee like grains , which I know from past experience, means I am bleeding from the small intestine. Could she check the MRI written report please? She got back to me the same day and said I have a 5 cm stricture (the original one shown on endoscopy) and a 10 cm stricture deep in the lower pelvic area shown on the MRI. She said there is no ballooning above the strictures, which is a good sign apparently. I have an appt March 12th with the gastro to discuss laparotomy and resection.
In the 38 yrs of Crohn's I have never had a resection, although I had a laparotomy to diagnose my Crohn's in 1970 as we didn't have colonoscopy,endoscopy or MRI's then. How long, and how narrowed does the small intestine have to be before the gastro advises resection? I have quite severe intermittent pain in both sides of my groin, which the IBD nurse said could be referred pain from the strictures. I am floundering in the dark here and don't know what questions to ask the gastro before I agree, if necessary, to have surgery.
Does anyone have any insight please?
Liz. in Cornwall,England.
This week I rang the IBD specialist nurse, told her I now have blood in my stool and black coffee like grains , which I know from past experience, means I am bleeding from the small intestine. Could she check the MRI written report please? She got back to me the same day and said I have a 5 cm stricture (the original one shown on endoscopy) and a 10 cm stricture deep in the lower pelvic area shown on the MRI. She said there is no ballooning above the strictures, which is a good sign apparently. I have an appt March 12th with the gastro to discuss laparotomy and resection.
In the 38 yrs of Crohn's I have never had a resection, although I had a laparotomy to diagnose my Crohn's in 1970 as we didn't have colonoscopy,endoscopy or MRI's then. How long, and how narrowed does the small intestine have to be before the gastro advises resection? I have quite severe intermittent pain in both sides of my groin, which the IBD nurse said could be referred pain from the strictures. I am floundering in the dark here and don't know what questions to ask the gastro before I agree, if necessary, to have surgery.
Does anyone have any insight please?
Liz. in Cornwall,England.
i have only had one surgery done in the 13 yrs I have had crohns. the other times I have had a strictures my doc has done the balloon thing on me. so you may not need to go under the knife.
If you dont understand what your doc is talking about, tell them. sometimes I feel like a kid asking my doc to explain things better but if we dont understand, we dont know what to do to get better. Just ask them to spaek english, or ask whatever you are thinking. everybody does it. the doctors are the one that went to uni not us. but we do need to understand what they are telling us.
goodluck with everything. hope it gets better soon.
If you dont understand what your doc is talking about, tell them. sometimes I feel like a kid asking my doc to explain things better but if we dont understand, we dont know what to do to get better. Just ask them to spaek english, or ask whatever you are thinking. everybody does it. the doctors are the one that went to uni not us. but we do need to understand what they are telling us.
goodluck with everything. hope it gets better soon.
Hi again April - many thanks for your response, your comments are helpful. Seems crazy doesn't it, after 38 yrs of Crohn's I am now asking for help? C'est la vie.
I went for my normal monthly blood tests this morning (for methotrexate use) and talked to my lovely GP's nurse, who has a 29 yr old nephew with severe fistulising Crohn's, about my strictures. Her nephew has had a number of surgeries for his fistulas and strictures - he has a different form of Crohn's to mine, his being fistulising, mine is inflammatory, and she said he had strictureplasty. This was not resections, but entailed having some kind of balloon inserted where the strictures are, to widen them. I will talk to my gastro about this. Jenny said they do not like to do resections if they can avoid it, as the more intestine they resect, the worse the diarrhea becomes. He has never had diarrhea, as I have. I was told this back in 1970 when I was first diagnosed with 15 different areas of ulcers and crypt abscesses in my small intestine, so guess I have done very well. She said my current problem is due to many years of inflammation, which has thickened the mucosal wall, leading to strictures, which makes logical sense to me.
Yes, I have recently had a small bowel follow through, upper endoscopy and in Nov 2007 an MRI of the abdomen. Never had an MRI before for Crohn's (although have had otherwise) but my gastro said he is very concerned about the number of CT scans and radiotherapy I have had for breast cancer, and an MRI is non ionising radiation, so not harmful. The hospital tech who did the MRI said they have only been able to do MRI's for Crohn's in the last 18 months, as the technology was not there before. I am grateful for my gastro's knowledge and concern. Just need to see him March 12th and talk this whole thing through.
I did post to the GI doctor on this site and he responded that I need to talk to my gastro - obvious really. The medhelp gasrto hasn't seen the scans so cannot give a considered opinon. I am going to ask my gastro for a written copy of the MRI report (not usual in England to get copies of scans etc.) as he blinds me with technical terms I don't understand. My lovely husband says I shouldn't ask questions that I can't undertand the answers! Duh?!! That way I can take the report home and google the medical terms and then make a decision as to what to do. If I am not satisfied with my gastro's advice, I am going to ask for a referral to the only IBD hospital in England, St. Marks, in Harrow, near London. It is about 400 miles from here, but I can stay in a hotel whilst I get a second opinion before I agree to surgery. Hope it doesn't come to that, as we have a full calendar with the holiday apartment letting, and I would have to get someone to do the changeover. I am not in the least scared - breast cancer is scary, but Crohn's is not - I just don't want unnecessary surgery if I can avoid it.
Sounds as if you are doing well these days - keep it up!
Love and many thanks for your help.
Liz.
As you so rightly say, the one thing that worries me is that if the strictures gets worse, it could burst, and then I am in real trouble. I just need the gastro to give me some parameters - how long do the two strictures have to get, and how narrowed, before surgery is advised?
I went for my normal monthly blood tests this morning (for methotrexate use) and talked to my lovely GP's nurse, who has a 29 yr old nephew with severe fistulising Crohn's, about my strictures. Her nephew has had a number of surgeries for his fistulas and strictures - he has a different form of Crohn's to mine, his being fistulising, mine is inflammatory, and she said he had strictureplasty. This was not resections, but entailed having some kind of balloon inserted where the strictures are, to widen them. I will talk to my gastro about this. Jenny said they do not like to do resections if they can avoid it, as the more intestine they resect, the worse the diarrhea becomes. He has never had diarrhea, as I have. I was told this back in 1970 when I was first diagnosed with 15 different areas of ulcers and crypt abscesses in my small intestine, so guess I have done very well. She said my current problem is due to many years of inflammation, which has thickened the mucosal wall, leading to strictures, which makes logical sense to me.
Yes, I have recently had a small bowel follow through, upper endoscopy and in Nov 2007 an MRI of the abdomen. Never had an MRI before for Crohn's (although have had otherwise) but my gastro said he is very concerned about the number of CT scans and radiotherapy I have had for breast cancer, and an MRI is non ionising radiation, so not harmful. The hospital tech who did the MRI said they have only been able to do MRI's for Crohn's in the last 18 months, as the technology was not there before. I am grateful for my gastro's knowledge and concern. Just need to see him March 12th and talk this whole thing through.
I did post to the GI doctor on this site and he responded that I need to talk to my gastro - obvious really. The medhelp gasrto hasn't seen the scans so cannot give a considered opinon. I am going to ask my gastro for a written copy of the MRI report (not usual in England to get copies of scans etc.) as he blinds me with technical terms I don't understand. My lovely husband says I shouldn't ask questions that I can't undertand the answers! Duh?!! That way I can take the report home and google the medical terms and then make a decision as to what to do. If I am not satisfied with my gastro's advice, I am going to ask for a referral to the only IBD hospital in England, St. Marks, in Harrow, near London. It is about 400 miles from here, but I can stay in a hotel whilst I get a second opinion before I agree to surgery. Hope it doesn't come to that, as we have a full calendar with the holiday apartment letting, and I would have to get someone to do the changeover. I am not in the least scared - breast cancer is scary, but Crohn's is not - I just don't want unnecessary surgery if I can avoid it.
Sounds as if you are doing well these days - keep it up!
Love and many thanks for your help.
Liz.
As you so rightly say, the one thing that worries me is that if the strictures gets worse, it could burst, and then I am in real trouble. I just need the gastro to give me some parameters - how long do the two strictures have to get, and how narrowed, before surgery is advised?
Hi Liz. I'm sorry you're going through this. I'm not sure how far they allow the narrowing in the small intestine before they advise resection. I just know you don't want things to get backed up or you could be in a whole heap of trouble. If you're having intermittent pain, it could be because things are slowed down. I had that for months before we saw the mass that was narrowing a small area of my terminal ileum. Sometimes I'd be doubled over in pain and would have to just wait it out until it passed, which was hours sometimes.
I know this is scary but please try not to be afraid. I did wonderfully with the resection surgery and I haven't had pain since! Of course, I had the normal pain of recovering from surgery for a few weeks but after that I felt wonderful! I have not had any problems since! I don't even have diarhea (unless I eat something that doesn't agree with me). I did have it for awhile after surgery, but I think that was just my body adjusting to the changes. It's now been six months since my surgery and I feel great! I've not had that stomach pain since.
Like I said, you don't want to get backed up or have something burst and get peritinitis as that could be deadly. My grandmother had that and was in such incredible pain and nearly died. They had to go in and clean things up. It wasn't pretty.
I'm not sure what you should ask your Gastro as your situation is kinda different than mine. I'd ask what the risks are both if you do the surgery and if you don't. I can pretty much tell you what he'd say though. Yes, there's always risk with surgery, one of them being perferation, but my surgeon said it happens in 1 to 4% of all patients. The risk of not having the surgery is having the intestine burst and peritinitis (not sure I spelled that right). How much would they have to cut out? With me it was about 5 or 6 cm.
Have you had an Upper GI and lower bowel follow through done? You might want to get that done before the surgery as they could pin point exactly where everything is and how well your small intestine is performing. I had one done a few days before they surgery and I think it helped the surgeon see exactly where it was. And we could see when they dye went through that that part of the intestine was not working as well or pushing through things as well. You could see how narrowed it was. I got to watch the screen. It was pretty interesting, actually.
I know I probably wasn't much help. I'm not as knowledgable as many others. It might be a good idea to post this question to the GI doctor on this site and see what he says.
Keep in touch and let me know what you decide and where you will go from here, ok? Take care & God bless you.
April
I know this is scary but please try not to be afraid. I did wonderfully with the resection surgery and I haven't had pain since! Of course, I had the normal pain of recovering from surgery for a few weeks but after that I felt wonderful! I have not had any problems since! I don't even have diarhea (unless I eat something that doesn't agree with me). I did have it for awhile after surgery, but I think that was just my body adjusting to the changes. It's now been six months since my surgery and I feel great! I've not had that stomach pain since.
Like I said, you don't want to get backed up or have something burst and get peritinitis as that could be deadly. My grandmother had that and was in such incredible pain and nearly died. They had to go in and clean things up. It wasn't pretty.
I'm not sure what you should ask your Gastro as your situation is kinda different than mine. I'd ask what the risks are both if you do the surgery and if you don't. I can pretty much tell you what he'd say though. Yes, there's always risk with surgery, one of them being perferation, but my surgeon said it happens in 1 to 4% of all patients. The risk of not having the surgery is having the intestine burst and peritinitis (not sure I spelled that right). How much would they have to cut out? With me it was about 5 or 6 cm.
Have you had an Upper GI and lower bowel follow through done? You might want to get that done before the surgery as they could pin point exactly where everything is and how well your small intestine is performing. I had one done a few days before they surgery and I think it helped the surgeon see exactly where it was. And we could see when they dye went through that that part of the intestine was not working as well or pushing through things as well. You could see how narrowed it was. I got to watch the screen. It was pretty interesting, actually.
I know I probably wasn't much help. I'm not as knowledgable as many others. It might be a good idea to post this question to the GI doctor on this site and see what he says.
Keep in touch and let me know what you decide and where you will go from here, ok? Take care & God bless you.
April
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