Does anyone have pain and cramping all day long? I have both collagenous and lymphocytic colitis and have been on Entecort for about 3 months now. I've been hospitalized twice this year due to uncontrolled diarrhea and intense stomach/intestinal pain. I've tried Bentyl which works slightly but I'm now on narcotics because the pain is so intense. Please tell me someone else out there has dealt with the pain and gotten some relief!
Thanks for your help!
Judy
Needing advice for Pain and Cramping that lasts all day long
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Beloved One
- Posts: 3
- Joined: Tue Aug 28, 2012 9:09 pm
Hi Judy,
Welcome to our internet family. I'm sorry that you're having those persistent symptoms. They are very common for most of us, while others with MC do not experience them. Personally, I was lucky because my symptoms cycled from uncontrollable D to normal BMs and then to C (constipation), and they it started the cycle over. During the D phase, the pain was fairly consistent, but sometimes cramps would come in waves that would be almost unbearable, and they would literally bring me to my knees, until they let up.
I never took anything for it — I changed my diet instead, and eventually eliminated all my symptoms, as my intestines healed. Bentyl is a treatment for IBS, which is a fictitious disease created by GI specialists because they got tired of being embarrassed so often when they had to inform a patient that they didn't have the foggiest idea what was wrong with them, so they learned to just tell those patients that they had "IBS". Over the years, the usage of the term became so common that GI docs began to believe that the disease actually existed, and they arbitrarily decided that when patients with MC didn't respond to their prescribed treatment, they must have "IBS", and so some doctors began to prescribe an "IBS" treatment for an inflammatory bowel disease.
Some doctors know so little about MC that they believe it is the same as "IBS" and so their first line of treatment for it is "IBS" treatments. If your doctor is in that category, please be aware that there are drugs available that will bring relief for most people. The proper way to treat MC is to control the source of the inflammation — just treating the symptoms is seldom satisfactory, and it does not prevent additional damage to accrue to the intestines. Anti-inflammatory drugs can be used to suppress the inflammation, but please be aware that the inflammation is perpetuated by food sensitivities, and unless those foods are completely removed from the diet, as soon as the drugs are discontinued, the symptoms will return.
Your list of food intolerances is a good start, but please be aware that virtually all of us here (with only a handful of exceptions) are very sensitive to gluten (even though we always test negative to the classic celiac blood tests, unless we also have fully-developed celiac disease). The medical community has no way to officially diagnose gluten sensitivity or any of the early stages of celiac disease, so they continue to mistakenly claim that diet has nothing to do with MC. That's also the reason why most celiacs suffer for an average of 9.7 years from the onset of clinical symptoms until they are finally able to get a valid diagnosis of celiac disease from their doctor. The system sucks, but doctors don't seem to be in any hurry to correct their diagnostic shortcomings.
I was once where you are, and I resolved my symptoms (and I had many, many other symptoms that you didn't name) by eating a very bland diet for almost two years, to allow my gut to heal. I cut out gluten, dairy products, corn, (and all derivatives of these foods), fiber, sugar, nuts, most fruits (except bananas), and all raw vegetables, and artificial sweeteners. I ordered tests from EnteroLab that determined that I was not sensitive to soy, eggs, and yeast, so meat, eggs, potatoes, and rice were the main staples in my diet. (About half of us here are sensitive to soy, however, and all legumes). I drank water or unsweetened tea. After my gut healed, I was able to add many foods back into my diet, by carefully testing them, one at a time. The only foods that I have to continue to avoid today are gluten (including oats), dairy, excess sugar, nuts, and grapes. I can even eat chiles, as long as I don't overdo it.
If you are willing to use drugs to help suppress the inflammation, and reduce the pain, the safest effective inflammatory medication (based on the accumulated experience of the members of this board) seems to be Entocort EC, and many members have very good results with it. Some members have good results from the Pepto-Bismol treatment, which consists of 8 or 9 capsules or tablets, or the liquid equivalent, of Pepto-Bismol per day, for a period of 8 weeks. Except for those who are allergic to one or more of the ingredients in Pepto, this treatment often brings good results, when used in conjunction with diet changes.
Please be very careful when using narcotic painkillers to treat MC, because they are notorious for causing life-threatening impaction problems. That may seem incongruent with a disease characterized by uncontrollable D, but more than one or two members here have that problem after taking narcotic painkillers.
We are all different, but we all compare notes here, and work out our own personal treatment plan, by looking at what works for others, and trying various options. I hope that you can fine-tune a treatment program that will work for you, also.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. I'm sorry that you're having those persistent symptoms. They are very common for most of us, while others with MC do not experience them. Personally, I was lucky because my symptoms cycled from uncontrollable D to normal BMs and then to C (constipation), and they it started the cycle over. During the D phase, the pain was fairly consistent, but sometimes cramps would come in waves that would be almost unbearable, and they would literally bring me to my knees, until they let up.
I never took anything for it — I changed my diet instead, and eventually eliminated all my symptoms, as my intestines healed. Bentyl is a treatment for IBS, which is a fictitious disease created by GI specialists because they got tired of being embarrassed so often when they had to inform a patient that they didn't have the foggiest idea what was wrong with them, so they learned to just tell those patients that they had "IBS". Over the years, the usage of the term became so common that GI docs began to believe that the disease actually existed, and they arbitrarily decided that when patients with MC didn't respond to their prescribed treatment, they must have "IBS", and so some doctors began to prescribe an "IBS" treatment for an inflammatory bowel disease.
Some doctors know so little about MC that they believe it is the same as "IBS" and so their first line of treatment for it is "IBS" treatments. If your doctor is in that category, please be aware that there are drugs available that will bring relief for most people. The proper way to treat MC is to control the source of the inflammation — just treating the symptoms is seldom satisfactory, and it does not prevent additional damage to accrue to the intestines. Anti-inflammatory drugs can be used to suppress the inflammation, but please be aware that the inflammation is perpetuated by food sensitivities, and unless those foods are completely removed from the diet, as soon as the drugs are discontinued, the symptoms will return.
Your list of food intolerances is a good start, but please be aware that virtually all of us here (with only a handful of exceptions) are very sensitive to gluten (even though we always test negative to the classic celiac blood tests, unless we also have fully-developed celiac disease). The medical community has no way to officially diagnose gluten sensitivity or any of the early stages of celiac disease, so they continue to mistakenly claim that diet has nothing to do with MC. That's also the reason why most celiacs suffer for an average of 9.7 years from the onset of clinical symptoms until they are finally able to get a valid diagnosis of celiac disease from their doctor. The system sucks, but doctors don't seem to be in any hurry to correct their diagnostic shortcomings.
I was once where you are, and I resolved my symptoms (and I had many, many other symptoms that you didn't name) by eating a very bland diet for almost two years, to allow my gut to heal. I cut out gluten, dairy products, corn, (and all derivatives of these foods), fiber, sugar, nuts, most fruits (except bananas), and all raw vegetables, and artificial sweeteners. I ordered tests from EnteroLab that determined that I was not sensitive to soy, eggs, and yeast, so meat, eggs, potatoes, and rice were the main staples in my diet. (About half of us here are sensitive to soy, however, and all legumes). I drank water or unsweetened tea. After my gut healed, I was able to add many foods back into my diet, by carefully testing them, one at a time. The only foods that I have to continue to avoid today are gluten (including oats), dairy, excess sugar, nuts, and grapes. I can even eat chiles, as long as I don't overdo it.
If you are willing to use drugs to help suppress the inflammation, and reduce the pain, the safest effective inflammatory medication (based on the accumulated experience of the members of this board) seems to be Entocort EC, and many members have very good results with it. Some members have good results from the Pepto-Bismol treatment, which consists of 8 or 9 capsules or tablets, or the liquid equivalent, of Pepto-Bismol per day, for a period of 8 weeks. Except for those who are allergic to one or more of the ingredients in Pepto, this treatment often brings good results, when used in conjunction with diet changes.
Please be very careful when using narcotic painkillers to treat MC, because they are notorious for causing life-threatening impaction problems. That may seem incongruent with a disease characterized by uncontrollable D, but more than one or two members here have that problem after taking narcotic painkillers.
We are all different, but we all compare notes here, and work out our own personal treatment plan, by looking at what works for others, and trying various options. I hope that you can fine-tune a treatment program that will work for you, also.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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 Judy,
Welcome! I was an entocort user and have been off of it since January. It is very important to eliminate gluten (although most GI docs are unaware of this.) Early on think chicken soup (with no noodles), chicken broth, protein 3 x per day, rice or mashed potatos, and overcooked veggies. Steer clear of raw veggies and nuts and I'd wait awhile before attempting a fruit. Have rice or mashed potatos instead of wheat bread or wheat crackers. Try to stick with things with less than 3 ingredients on the package. I found it helpful to eliminate supplements early on and the ones you keep make sure are gluten free, dairy free and soy free. brandy
PS forgot to mention steer clear of gatorade or sports drinks. They have too many ingredients for us. A better choice for dehydration is listed on the front page of this forum. Also get gluten free bread if you can't do without bread but even now I do better abstaining from GF breads.
Welcome! I was an entocort user and have been off of it since January. It is very important to eliminate gluten (although most GI docs are unaware of this.) Early on think chicken soup (with no noodles), chicken broth, protein 3 x per day, rice or mashed potatos, and overcooked veggies. Steer clear of raw veggies and nuts and I'd wait awhile before attempting a fruit. Have rice or mashed potatos instead of wheat bread or wheat crackers. Try to stick with things with less than 3 ingredients on the package. I found it helpful to eliminate supplements early on and the ones you keep make sure are gluten free, dairy free and soy free. brandy
PS forgot to mention steer clear of gatorade or sports drinks. They have too many ingredients for us. A better choice for dehydration is listed on the front page of this forum. Also get gluten free bread if you can't do without bread but even now I do better abstaining from GF breads.
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Beloved One
- Posts: 3
- Joined: Tue Aug 28, 2012 9:09 pm
Thank you, Brandy and Tex for your comments.
I've virtually alimented all raw fruit and veggies, fried foods, dairy and even went on a gluten free diet for 3.5 weeks with no success.
When I eat a meal as soon as the severe cramping starts I stop eating. I've been eating very small meals every few hours but the verdict is still out on whether that works. It's so frustrating.
Tex, I went to a GI this week(after waiting 2.5 months to get in) who I found listed in this forum. I showed him your book and he said he'll be ordering it this week. He was pretty sure that the two of you have emailed each other about colitis. His name is Dr. Scot Lewey. Dr. Lewey ordered blood tests to be done by Prometheus Labs which will check for gluten sensitivities. This has been done before earlier this year stating that I don't have a gluten issue. I also will be having my 3rd colonoscopy and second EGD this year done next month as he wants to look at everything again.
Personally Tex, I'm almost finished reading your book and plan on going back through it again and highlight things that I can do to help get in remission. Thank you so much for writing it! I've learned so much already.
It's been a very long and painful 9 months and I can't tell you how much I appreciate finding out I'm not alone in dealing with this.
Judy
I've virtually alimented all raw fruit and veggies, fried foods, dairy and even went on a gluten free diet for 3.5 weeks with no success.
When I eat a meal as soon as the severe cramping starts I stop eating. I've been eating very small meals every few hours but the verdict is still out on whether that works. It's so frustrating. Tex, I went to a GI this week(after waiting 2.5 months to get in) who I found listed in this forum. I showed him your book and he said he'll be ordering it this week. He was pretty sure that the two of you have emailed each other about colitis. His name is Dr. Scot Lewey. Dr. Lewey ordered blood tests to be done by Prometheus Labs which will check for gluten sensitivities. This has been done before earlier this year stating that I don't have a gluten issue. I also will be having my 3rd colonoscopy and second EGD this year done next month as he wants to look at everything again.
Personally Tex, I'm almost finished reading your book and plan on going back through it again and highlight things that I can do to help get in remission. Thank you so much for writing it! I've learned so much already.
It's been a very long and painful 9 months and I can't tell you how much I appreciate finding out I'm not alone in dealing with this.
Judy
Hi,
Be careful! I ate only chicken and rice while waiting for the results from EnteroLab. The results put chicken and rice and the head of my sensitivities! They were making me sick!
and, yes I had (and sometimes still have) horrible cramps and pain. I was on narcotics for my back injury. I weaned myself off narcotics because they affect the gut! They can cause constipation and cramps, and reflux! I wouldn't get onto them if I were you.
How do I stand the pain? I spend a LOT of time lying on the floor. I go to the pool and jacuzzi (I have access - lucky), and I go out even less than I did before. I am exhausted all the time and go to bed very early.
What can I tell you? It hurts badly, but I had to make a choice. I opted to do without the narcotics. I often stand in front of my medicine closet wanting to take a pill, but then I think what it will do to me so I go and lie on the floor.
Be careful! I ate only chicken and rice while waiting for the results from EnteroLab. The results put chicken and rice and the head of my sensitivities! They were making me sick!
and, yes I had (and sometimes still have) horrible cramps and pain. I was on narcotics for my back injury. I weaned myself off narcotics because they affect the gut! They can cause constipation and cramps, and reflux! I wouldn't get onto them if I were you.
How do I stand the pain? I spend a LOT of time lying on the floor. I go to the pool and jacuzzi (I have access - lucky), and I go out even less than I did before. I am exhausted all the time and go to bed very early.
What can I tell you? It hurts badly, but I had to make a choice. I opted to do without the narcotics. I often stand in front of my medicine closet wanting to take a pill, but then I think what it will do to me so I go and lie on the floor.
Hi Judy,
I think you are seeing one of the best GI docs in the country who "gets" our disease so you should be in good hands. Most of us find very small meals are a good way to go--particularly early on. Going GF probably took me about 10 weeks to see results but I was what you would call a slow healer. A lot of members of our forum see results much faster but like I said I was a slow healer. Believe me it does get better--I was diagnosed at age 49 have been off of Entocort since mid Jan 2012 and other than some lingering fatigue and eating GF I'm living a normal life. I think that a lot of us test negative to gluten sensitivities but respond to the GF diet.
Best wishes, Brandy
I think you are seeing one of the best GI docs in the country who "gets" our disease so you should be in good hands. Most of us find very small meals are a good way to go--particularly early on. Going GF probably took me about 10 weeks to see results but I was what you would call a slow healer. A lot of members of our forum see results much faster but like I said I was a slow healer. Believe me it does get better--I was diagnosed at age 49 have been off of Entocort since mid Jan 2012 and other than some lingering fatigue and eating GF I'm living a normal life. I think that a lot of us test negative to gluten sensitivities but respond to the GF diet.
Best wishes, Brandy
Judy,
Good for you. As Brandy and Deb have already pointed out, your new GI specialist is arguably the best GI doc in the entire country (possibly the world), for issues that involve food sensitivities. He is one of the few GI docs who seem to stay on the cutting edge of new developments, and he definitely knows his stuff.
Wow! I've read a lot of the articles that Dr. Lewey has published, and he's always right on target, so I feel honored that he would be interested in reading my book. I certainly hope that he won't be disappointed.
Thank you so much for introducing it to him.
Tex
Good for you. As Brandy and Deb have already pointed out, your new GI specialist is arguably the best GI doc in the entire country (possibly the world), for issues that involve food sensitivities. He is one of the few GI docs who seem to stay on the cutting edge of new developments, and he definitely knows his stuff.
Wow! I've read a lot of the articles that Dr. Lewey has published, and he's always right on target, so I feel honored that he would be interested in reading my book. I certainly hope that he won't be disappointed.
Thank you so much for introducing it to him.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I have had cramping pain my whole life, (even been hospitalised for it)
Something that you are eating or doing is causing you major inflammation.
agreed 3.5 weeks of gluten free is not enough time to allow the gut to heal. If now you are ingesting something that is as aggrevating as what gluten was, you wont be healing.
try and find a simple 3-4 ingredient mushy easy to digest meal that does not cause symptoms. stick to that for a few weeks (yep the same meal for a few weeks)
when i was having the cramping pains, rest and minimal to no eating was the only solution
Even though i had the cramping pain my whole life, once i got the MC Dx, and I focussed on elminating triggers and followed a gut healing eating plan, now i hardly ever get the cramping pains.
Something that you are eating or doing is causing you major inflammation.
agreed 3.5 weeks of gluten free is not enough time to allow the gut to heal. If now you are ingesting something that is as aggrevating as what gluten was, you wont be healing.
try and find a simple 3-4 ingredient mushy easy to digest meal that does not cause symptoms. stick to that for a few weeks (yep the same meal for a few weeks)
when i was having the cramping pains, rest and minimal to no eating was the only solution
Even though i had the cramping pain my whole life, once i got the MC Dx, and I focussed on elminating triggers and followed a gut healing eating plan, now i hardly ever get the cramping pains.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
HI Judy and welcome to our family. I agree with everyone here. Going GF should probably last 2-3 months to know if it is helping. Sounds like you have a lot of inflammation, so almost any food will give you discomfort ( some more then others). The only new thing I'd like to add is that when I was on Entocort, I would get more cramping and pain when it was time to step down the dose. Of course we are all different, but after about a month of 9mg. a day, I needed to go to 9mg one day, 6mg the next and so on. You get the picture. A very slow wean. It took six months to get completely off. I used that time to figure out all the things that upset my gut. Now, all i take is an OTC antihistamine and have added many things back in....BUT GLUTEN WILL NEVER BE ONE OF THEM!
Good luck and keep us posted
Leah
Good luck and keep us posted
Leah
HI Judy,
You've already gotten such good advice, I only want to throw in a couple more things.
After being on Entocort 3-4 months (and making all the diet changes necessary) I had cramps, then every time I reduced the Entocort they let up--like Leah described. Some cramping may be a side effect of the Entocort.
Then after I had been off Entocort about 4 months I started having cramping again. I manipulated everything I could think of, even cutting out histamine foods. I had minimal success until my Dr. put me on Amitriptyline, just 10 mg. It made a big difference in relaxing my gut motility. I felt before that I was just spasming all the time. After the amitriptyline I'm no longer having cramping and I'm more regular. No one wants to take more meds but in this case it has made a huge difference and I had already manipulated everything I could control. The cramps were wearing me out.
So hang in there. There is hope. And as everyone said you are in great hands with Dr. Lewey. Keep us posted on your progress.
Carol
You've already gotten such good advice, I only want to throw in a couple more things.
After being on Entocort 3-4 months (and making all the diet changes necessary) I had cramps, then every time I reduced the Entocort they let up--like Leah described. Some cramping may be a side effect of the Entocort.
Then after I had been off Entocort about 4 months I started having cramping again. I manipulated everything I could think of, even cutting out histamine foods. I had minimal success until my Dr. put me on Amitriptyline, just 10 mg. It made a big difference in relaxing my gut motility. I felt before that I was just spasming all the time. After the amitriptyline I'm no longer having cramping and I'm more regular. No one wants to take more meds but in this case it has made a huge difference and I had already manipulated everything I could control. The cramps were wearing me out.
So hang in there. There is hope. And as everyone said you are in great hands with Dr. Lewey. Keep us posted on your progress.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hi Judy,
You have gotten some great advice, and you're fortunate to have a great doctor! Everyone's right about healing taking a long time. Please be good to yourself!
Carol - thanks for the tip about amitriptyline. I have had cramps, again, for the past three days even though I've nearly weaned off my Endocort. You are so right about feeling exhausted. Maybe that will do the trick for me, too. Thank you,
Kathy
You have gotten some great advice, and you're fortunate to have a great doctor! Everyone's right about healing taking a long time. Please be good to yourself!
Carol - thanks for the tip about amitriptyline. I have had cramps, again, for the past three days even though I've nearly weaned off my Endocort. You are so right about feeling exhausted. Maybe that will do the trick for me, too. Thank you,
Kathy
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Beloved One
- Posts: 3
- Joined: Tue Aug 28, 2012 9:09 pm
Needing advice for Pain and Cramping that lasts all day long
Thanks everyone for the advice!
Overall, I feel like I am doing better. I'm now waiting to have another colonoscopy and EGD which is scheduled for the 17th of December. The Dr. wanted to see if the Collagenous Colitis and Lymphocytic Colitis are healing. He also wants to try and view the ileum as I jump in pain when he presses down on it.
Judy
Overall, I feel like I am doing better. I'm now waiting to have another colonoscopy and EGD which is scheduled for the 17th of December. The Dr. wanted to see if the Collagenous Colitis and Lymphocytic Colitis are healing. He also wants to try and view the ileum as I jump in pain when he presses down on it.
Judy
Hi Judy,
According to research, the ileum is virtually always inflamed if MC is present in the colon, so I would be surprised only if he doesn't find evidence of MC there.
Good luck with the examinations.
Tex
According to research, the ileum is virtually always inflamed if MC is present in the colon, so I would be surprised only if he doesn't find evidence of MC there.
Good luck with the examinations.
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.