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pain and colonscopy
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pain and colonscopy
question- first of all i am having a lot of pain still even on the entecort. I've been on it for about 5 weeks and still have frequent stomach pain. When I try a new food that is peicy and therefore hard to digest (like rice) I get severe stomach pain even after only eating a little bit. I was wondering if anyone else also had a lot of pain with their CC. My Dr.s make me feel like I am not supposed to have so much pain with this type of colitits. They claim usually the only issue is diareah which for me is better now with the entecort. I am so afraid to eat anything and I am really suffering. I have an extremely limited diet and wonder how long this will last. The Dr. also wants me to have another colonoscopy to see if something else is going on b/c in addition to the pain on my right side, I started having pain on the left as well. I haven't had a colonscopy in over a year. I was wondering if the colonscopy is too risky and can cause more damage. Has anyone had that experience? I'm afraid to do it if it may make things worse. Thanks for your help.
Belle
Your doctors clearly don't understand microscopic colitis. Not everyone with MC has pain, but most of us do. When I was reacting, I had cramps and/or abdominal pain most of the time, and at times it was almost unbearable. When the pain was really bad, I often stuck with chicken soup, or something else that's easy to digest.Belle wrote:My Dr.s make me feel like I am not supposed to have so much pain with this type of colitits. They claim usually the only issue is diareah which for me is better now with the entecort.
It's extremely unlikely that anything has changed in your colon that could be detected by another colonoscopy, so close after the last. Physiological changes typically occur slowly in the colon. The fact that your doctor even suggested another colonoscopy so soon after the last, is proof that he or she is lost, and doesn't understand the disease. Another colonoscopy would almost surely be a complete waste of time and money, (to say nothing of exposing yourself to the risks involved with such an invasive test), because nothing new will be found. The pain on your left side, (in the sigmoid colon), could even be a sign that you are beginning to form "Normans". For some of us, after long episodes of D, the first Normans can be painful, because our intestines are still hypersensitive.
As far as the risks of doing an unnecessary colonoscopy are concerned, besides the risk of a perforation, (which would require immediate, emergency surgery, to save your life), the cleanout solution used to prep for a colonoscopy is very caustic, and sometimes it will trigger an MC flare for someone who has been in remission for years. It's your decision, but I wouldn't even consider it. Your doctor is trying to use you as a guinea pig - to learn more about the disease at your expense, and at your risk.
I'm sorry that you're having so much pain, because I realize what it's like. You may need to do more food testing. If rice is a problem, you may have many food-sensitivities that will have to be avoided, in order to reach remission.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
thanks for your reply. i have been eating rice cakes and those kind of rice products but rice itself seems to be hard to digest. I also tried to have instant oatmeal and had terrible pain but I eat oat bread and that is fine. When I was on the scd diet i had terrible pain when i tried the almond flour. I'm hoping that its just a matter of time and as i heal more i will be able to tolerate more. i'm assuming the pain from these foods was because they are peicy and hard to digest or the almond flour is very high fat and high protein which maybe i wasn't used to. i only had the pain when i had it in high concentration like an almond cookie as opposed to a little bit added to something. what's your thoughts
Belle
I'm sorry to hear about your pain. I know what that's like and share that with you and Tex. I had a lot of terrible pain until I got things under control. I had to eat clear chicken broth with tiny bits of well cooked carrot for a couple of weeks until I could put a little rice in...I had to go very slowly. I had a lot of nausea so it wasn't hard for me to take some nourishment that way...
Are you on a gluten free diet? That made a huge difference for me. I cut out gluten, soy and casein from my diet immediately. It probably saved me as I was very sick.
Entocort has been great for me once it kicked in and I changed my diet completely. I'm weaning myself off at present.
I hope you get some relief....I didn't starve to death :0) you won't either even though it sometimes seems like it.
Are you on a gluten free diet? That made a huge difference for me. I cut out gluten, soy and casein from my diet immediately. It probably saved me as I was very sick.
Entocort has been great for me once it kicked in and I changed my diet completely. I'm weaning myself off at present.
I hope you get some relief....I didn't starve to death :0) you won't either even though it sometimes seems like it.
Belle,
I'm not sure what you mean by "peicy".
I have the same problem with almonds. Almond milk works fine, and I can eat a few almonds without any problems, but if I eat a bunch of them, I'm in trouble. Peanuts are much worse, and so are cashews, so I avoid them. I don't have to avoid all traces of them, I just can't sit down and eat a handful of them without regretting it later. Like you, the problem is not so much with D, (though they can sometimes cause D), as pain and discomfort - maybe that's a sign that I'm just having trouble digesting them properly.
I can't eat oats. If I do eat it regularly, for a while, I eventually react to it just like wheat gluten, (the D starts and won't stop), so apparently it damages my small intestine. I may be a celiac, though.
Tex
I'm not sure what you mean by "peicy".
I have the same problem with almonds. Almond milk works fine, and I can eat a few almonds without any problems, but if I eat a bunch of them, I'm in trouble. Peanuts are much worse, and so are cashews, so I avoid them. I don't have to avoid all traces of them, I just can't sit down and eat a handful of them without regretting it later. Like you, the problem is not so much with D, (though they can sometimes cause D), as pain and discomfort - maybe that's a sign that I'm just having trouble digesting them properly.
I can't eat oats. If I do eat it regularly, for a while, I eventually react to it just like wheat gluten, (the D starts and won't stop), so apparently it damages my small intestine. I may be a celiac, though.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
i've been off gluten, dairy soy and others for 3 months and have not yet felt any better. only worse. i also ate chicken broth and cooked carrots for a while and besides making me constipated it did not help with the pain. how long did you find the entecort took to make you feel really much better not just a little better?
Belle
I've never taken Entocort, so I can't answer that question, unfortunately. Most people see some improvement on Entocort within a few weeks, though some take a couple of months or so, and some take longer. A few have seen major improvement in less than a week. If you are having problems with constipation, though, Entocort will make that problem worse. That's a sign that you probably need to lower the dose, (if you're having C).
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Belle,
Yes, I had "stomach" pain the first 6- weeks on Entocort. I couldnt figure out how to cut and paste the percent side effects from the Astrazeneca of the following but you can look at the tiny insert that came with your Entocort (you want the insert with the tiny font not the printout from the drug store) or go to the Astrazeneca website for the patient info for Entocort. In their studies 7% of users had back pain, 6% of users had dyspepsia, 6% of users had abdominal pain and 5% of users had pain as side effecs. I wish I could cut and paste from the website for you. A lot of Entocort users have no side effects. I definitely was a 7 percenter...i.e. I had the side effects.
http://www1.astrazeneca-us.com/pi/entocortec Not sure if I have this link in here right?
The pain that I had was almost like my bowels trying to figure out "how to make a bm" after 4 months of WD.
Also suggest take a look at the ingredients of the oat bread. If it has gluten or wheat suggest discontinue.
Also not sure how many pills or mg you are taking at 5 weeks? As a rule I had less stomach pain as I did my step downs.
Week 5 on Entocort I was still in pretty rough shape and eating extremely narrow diet. Now I'm doing good and getting ready to go dancing tonight with the boyfriend. I've been off for Entocort for 7 weeks now. I guess after one more week I'll be more in the clear.
I saw your last question and please note that I think I'm probably an exception as I had side effects on Entocort. For me Entocort solidified the stool but I didn't start feeling "like myself" again until 2 weeks after my last tablet.
A lot of posters seem to heal pretty quickly. For me things took time to heal. Brandy
Yes, I had "stomach" pain the first 6- weeks on Entocort. I couldnt figure out how to cut and paste the percent side effects from the Astrazeneca of the following but you can look at the tiny insert that came with your Entocort (you want the insert with the tiny font not the printout from the drug store) or go to the Astrazeneca website for the patient info for Entocort. In their studies 7% of users had back pain, 6% of users had dyspepsia, 6% of users had abdominal pain and 5% of users had pain as side effecs. I wish I could cut and paste from the website for you. A lot of Entocort users have no side effects. I definitely was a 7 percenter...i.e. I had the side effects.
http://www1.astrazeneca-us.com/pi/entocortec Not sure if I have this link in here right?
The pain that I had was almost like my bowels trying to figure out "how to make a bm" after 4 months of WD.
Also suggest take a look at the ingredients of the oat bread. If it has gluten or wheat suggest discontinue.
Also not sure how many pills or mg you are taking at 5 weeks? As a rule I had less stomach pain as I did my step downs.
Week 5 on Entocort I was still in pretty rough shape and eating extremely narrow diet. Now I'm doing good and getting ready to go dancing tonight with the boyfriend. I've been off for Entocort for 7 weeks now. I guess after one more week I'll be more in the clear.
I saw your last question and please note that I think I'm probably an exception as I had side effects on Entocort. For me Entocort solidified the stool but I didn't start feeling "like myself" again until 2 weeks after my last tablet.
A lot of posters seem to heal pretty quickly. For me things took time to heal. Brandy
i am not eating much processed foods at all. i'm actually not eating that much at all b/c i am scared to eat anything after the crazy pains i was having. i get the oat bread from a dedicated gluten free bakery that uses certified gluten free oats so that is not the problem. i only eat it once a week for our sabbath meal. it's funny b/c b4 i was diagnosed i was a very healthy eater. i loved salaads and veggies. now i am scared to touch a raw vegetable and eat very few cooked veggies that i can tolerate. I really miss my salaad. i'm wondering if i should start to try and add in one raw veggie at a time. how long were most of you on the entecort b4 you felt ready for that?
Belle
Hi Belle,
Sorry from me too, I'm envious you have a dedicated gluten free bakery nearby. If you are still having stomach pains and difficulty digesting rice I would wait awhile before trying raw veggies or lettuce. Raw veggies, lettuce, nuts and popcorn are kind of like little shards of glass going thru the digestion system and you need to be pretty far along in healing in order to tolerate them. Otherwise these things irritate an already inflamed digestion system. I'm guessing most readers maybe do not try raw things for maybe 6, 9 or 12 months. I was eating lettuce much earlier than most after 4 full months on Entocort with only occasional gurgle but I believe this is way earlier than most people. When you feel well enough to try lettuce I found organic butter lettuce, organic salad mix (without arugala) and organic spinach was least problematic. Arugala and romaine caused gurling and I think ice berg is very dangerous for us. Destem everything and chew extremely well. To be honest I'm still kind of freaked out about eating raw things and the only things I've had raw to date has been the above listed lettuce, apples (after Tex mentioned then), organic carrots, organic carrot shreds to put on the lettuce and blueberries (after another poster mentioned them.) Eating popcorn was a huge mistake. Hope this helps and suggest staying with cooked stuff for awhile until your pains subside and you system seems a little more stabilized. Brandy
Sorry from me too, I'm envious you have a dedicated gluten free bakery nearby. If you are still having stomach pains and difficulty digesting rice I would wait awhile before trying raw veggies or lettuce. Raw veggies, lettuce, nuts and popcorn are kind of like little shards of glass going thru the digestion system and you need to be pretty far along in healing in order to tolerate them. Otherwise these things irritate an already inflamed digestion system. I'm guessing most readers maybe do not try raw things for maybe 6, 9 or 12 months. I was eating lettuce much earlier than most after 4 full months on Entocort with only occasional gurgle but I believe this is way earlier than most people. When you feel well enough to try lettuce I found organic butter lettuce, organic salad mix (without arugala) and organic spinach was least problematic. Arugala and romaine caused gurling and I think ice berg is very dangerous for us. Destem everything and chew extremely well. To be honest I'm still kind of freaked out about eating raw things and the only things I've had raw to date has been the above listed lettuce, apples (after Tex mentioned then), organic carrots, organic carrot shreds to put on the lettuce and blueberries (after another poster mentioned them.) Eating popcorn was a huge mistake. Hope this helps and suggest staying with cooked stuff for awhile until your pains subside and you system seems a little more stabilized. Brandy
entocort
Hi Belle
So sorry you are feeling so horrible. I've been on Entocort now for a couple of weeks and it made me feel better almost instantly. However, now I am on my way to becoming constipated. No pains though. Maybe you are just one of those people who are having a bad side effect from the meds. Perhaps you should wean yourself down to a lower dose and see if your pain gets better.
good luck
Leah
So sorry you are feeling so horrible. I've been on Entocort now for a couple of weeks and it made me feel better almost instantly. However, now I am on my way to becoming constipated. No pains though. Maybe you are just one of those people who are having a bad side effect from the meds. Perhaps you should wean yourself down to a lower dose and see if your pain gets better.
good luck
Leah