Hello everyone,
I have been doing better since I started the Enterocort 2 weeks ago, but today I felt as bad as before the Enterocort. I must have eaten something wrong yesterday because I had a lot of diarrea today and a hell of a lot of pain. I have an appointment at the hospital tomorrow and will ask them for something against the pain. What is your experience with treating this pain?
Love,
annie
Back to square one?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Tramadol!!!! I do not want to like the drugs with narcotics in them. Even though they slow down, or stop temporarily, the D. Tramadol is non narcotic and works just fine for me. Hope you find something that works for you too.
-Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain-
Kim
Kim
Dear Annie
So sorry you have relapsed. I sometimes think this whole thing is like a game of "snakes and ladders". We climb up and up the ladder and then land on a square which sends us sliding down the snake to a few levels below and we have to start climbing up again.......
I have been on Entocort and diet for almost a year. I have had flares and often felt like I was back at square one. But when I looked carefully I could see the long term trend was in my favour. I hope you get over this relapse and continue a gradual improvement. As they say "the (long term) trend is your friend"!
I surely hope so, all best Ant
So sorry you have relapsed. I sometimes think this whole thing is like a game of "snakes and ladders". We climb up and up the ladder and then land on a square which sends us sliding down the snake to a few levels below and we have to start climbing up again.......
I have been on Entocort and diet for almost a year. I have had flares and often felt like I was back at square one. But when I looked carefully I could see the long term trend was in my favour. I hope you get over this relapse and continue a gradual improvement. As they say "the (long term) trend is your friend"!
I surely hope so, all best Ant
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Annie as Ant mentioned it is the long term trend that counts. Patience and acceptance are a part of this healing process. I know I have had a few setbacks, but overall I am doing better than I have for at least the last 10 months.
Keep looking forward and stay with you diet and meds. Remember that you have a family of caring and understanding people here that have been through what you are going through now.
Take care Annie, I hope you feel better soon
--Joe
Keep looking forward and stay with you diet and meds. Remember that you have a family of caring and understanding people here that have been through what you are going through now.
Take care Annie, I hope you feel better soon
--Joe
Joe
abdominal pain
Annie-
I searched this subject and noticed that you posted several times about the pain and how it is unbearable. That's what sent me to the ER last Sunday. I spoke to my GI Dr.'s nurse yesterday, and she said that abdominal pain is NOT a common symptom with MC "it's usually diarrhea". WHATEVER!
I know my body, and I know when I am hurting. It makes me feel like I am crazy when I tell the medical professionals that I have severe abdominal pain. Not cramping like when you are about to have a BM but chronic, nagging pain right above my navel and on my right side middle belly.
I also asked her how many patients my doc is treating that have MC. She said "a lot". BS! He told me when he called with my biopsy results that I was the youngest patient he has heard of with this and that it is a rare disease.
I called my GI earlier in the week stating my concerns with taking both Entocort and Prednisone. His nurse called me back and said to stop the Entocort and just take the Prednisone. Then yesterday she said that I was to decrease the Pred to 20 mg a day until I see my Dr. next Tuesday. He also prescribed Rx Cholestyramine one packet four times a day. The pharmacy had to order it, so I have not picked it up yet. I don't have high hopes about this, but I am trying to be positive.
I realize that everyone is different, but I was just wondering if pain is common and to what degree. I recall reading that Gabes had abdominal pain also. I have taken the week off from work. I'm kind of afraid to leave the house and don't know what to expect. Makes me anxious. I actually vomitted in front of a client on Tuesday. How embarassing. I'm so grateful that I have an understanding supervisor. She rocks! I just wish my Dr. could walk a day in my shoes. Maybe he'd be a tad bit more empathetic. It pisses me off when his assistant tells me that "he can't see you this week. He's too slammed". Actual words out of her mouth! I would like to find another GI, but I'm not sure that they would be any better. My PCP's assistant said today that he would put in a referral for a new GI, but also informed me that by the time the referral was sent and someone contacted me, I probably wouldn't be able to get in to see anyone sooner than next week anyway. I'm just keeping my appointment for Tuesday and we'll see how it goes.
Connie- If you read this, could you tell me who you see for GI issues? I know we live fairly close, and I am wondering if you are satisfied with your doc or if it's just the same old BS everywhere.
Thanks-
Rebecca
I searched this subject and noticed that you posted several times about the pain and how it is unbearable. That's what sent me to the ER last Sunday. I spoke to my GI Dr.'s nurse yesterday, and she said that abdominal pain is NOT a common symptom with MC "it's usually diarrhea". WHATEVER!
I know my body, and I know when I am hurting. It makes me feel like I am crazy when I tell the medical professionals that I have severe abdominal pain. Not cramping like when you are about to have a BM but chronic, nagging pain right above my navel and on my right side middle belly.
I also asked her how many patients my doc is treating that have MC. She said "a lot". BS! He told me when he called with my biopsy results that I was the youngest patient he has heard of with this and that it is a rare disease.
I called my GI earlier in the week stating my concerns with taking both Entocort and Prednisone. His nurse called me back and said to stop the Entocort and just take the Prednisone. Then yesterday she said that I was to decrease the Pred to 20 mg a day until I see my Dr. next Tuesday. He also prescribed Rx Cholestyramine one packet four times a day. The pharmacy had to order it, so I have not picked it up yet. I don't have high hopes about this, but I am trying to be positive.
I realize that everyone is different, but I was just wondering if pain is common and to what degree. I recall reading that Gabes had abdominal pain also. I have taken the week off from work. I'm kind of afraid to leave the house and don't know what to expect. Makes me anxious. I actually vomitted in front of a client on Tuesday. How embarassing. I'm so grateful that I have an understanding supervisor. She rocks! I just wish my Dr. could walk a day in my shoes. Maybe he'd be a tad bit more empathetic. It pisses me off when his assistant tells me that "he can't see you this week. He's too slammed". Actual words out of her mouth! I would like to find another GI, but I'm not sure that they would be any better. My PCP's assistant said today that he would put in a referral for a new GI, but also informed me that by the time the referral was sent and someone contacted me, I probably wouldn't be able to get in to see anyone sooner than next week anyway. I'm just keeping my appointment for Tuesday and we'll see how it goes.
Connie- If you read this, could you tell me who you see for GI issues? I know we live fairly close, and I am wondering if you are satisfied with your doc or if it's just the same old BS everywhere.
Thanks-
Rebecca
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Rebecca /Annie
i had pain for many many years. frequently i would have sharp stabbing pains that were so bad i could not walk or even stand, and would take 30 seconds to 1 minute to abate to a level that i could actually move again but cramping pain of a lesser degree would be there
Since the MC diagnosis and using diet as my management tool, the pain has reduced, and since my recent travels and realising that caesin was not my friend, i have been almost pain free for 3 weeks. This is the best it has been for as long as i can remember (15 years or more)
(this also applies to migraines, and joint pain, i only get these when i am really over tired and i eat an item on the trigger list)
I get small amount of discomfort when i am overtired, 30 minute of relaxation and this goes away.
i use small amounts of cholestramine (questran) (half a satchet) for times when I have an item on my trigger list. aside from that I am not using any other meds for MC management.
I have put alot work mentally and emotionally to accepting life with MC. There has been big changes to my day to day diet, and I made changes "sacrifices" to my social life and weekend hobbies.
and I am super super careful and totally ON GUARD to ensure that there is no chance of containments getting into my system which is additional work (i take all my own cutlery crockery to work every day, i bring my own brewed coffee to work, i check the ingredient listing on EVERYTHING i buy, even if i have bought that item before i check it again to ensure there has been no changes, I spend 4 hours every sunday cooking up my foods for the week)
alot of my life with MC management techniques is based on the threads/posts on this site and the advice of these amazing people. I dont rely on the opinion of a medical professional or assistant that has never had MC, again, thanks to the wonderful people on this site, i dont have to rely on the medical profession for support, guidence, treatment advice. This week, it is 7 months since i was diagnosed.
i had pain for many many years. frequently i would have sharp stabbing pains that were so bad i could not walk or even stand, and would take 30 seconds to 1 minute to abate to a level that i could actually move again but cramping pain of a lesser degree would be there
Since the MC diagnosis and using diet as my management tool, the pain has reduced, and since my recent travels and realising that caesin was not my friend, i have been almost pain free for 3 weeks. This is the best it has been for as long as i can remember (15 years or more)
(this also applies to migraines, and joint pain, i only get these when i am really over tired and i eat an item on the trigger list)
I get small amount of discomfort when i am overtired, 30 minute of relaxation and this goes away.
i use small amounts of cholestramine (questran) (half a satchet) for times when I have an item on my trigger list. aside from that I am not using any other meds for MC management.
I have put alot work mentally and emotionally to accepting life with MC. There has been big changes to my day to day diet, and I made changes "sacrifices" to my social life and weekend hobbies.
and I am super super careful and totally ON GUARD to ensure that there is no chance of containments getting into my system which is additional work (i take all my own cutlery crockery to work every day, i bring my own brewed coffee to work, i check the ingredient listing on EVERYTHING i buy, even if i have bought that item before i check it again to ensure there has been no changes, I spend 4 hours every sunday cooking up my foods for the week)
alot of my life with MC management techniques is based on the threads/posts on this site and the advice of these amazing people. I dont rely on the opinion of a medical professional or assistant that has never had MC, again, thanks to the wonderful people on this site, i dont have to rely on the medical profession for support, guidence, treatment advice. This week, it is 7 months since i was diagnosed.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Rebecca,
Ditto to what Gabes said about the pain associated with MC. Often it was severe enough that it would cause me to double over, as a reflex action. Many on this site have compared it with the pain of childbirth, on really bad days.
Your GI doc is typical of most of them, I believe. He is pretending that he's an expert on the disease, when he probably knows much less about it than you. The original description of MC does not include any mention of pain, so naturally most GI docs assume that no pain is involved, and they are too hard-headed, (or maybe too dumb), to learn from their patients. It is true that some people do not experience any significant pain with MC, but for many of us, the pain is severe. Sometimes it comes in "waves", and sometimes it is persistent. For some reason, I always had the impression that most of the pain that I experienced, was due to my bloated guts pulling on the mesentary that supports them, and possibly pulling against adhesions, but that's just a guess.
Tex
Ditto to what Gabes said about the pain associated with MC. Often it was severe enough that it would cause me to double over, as a reflex action. Many on this site have compared it with the pain of childbirth, on really bad days.
Your GI doc is typical of most of them, I believe. He is pretending that he's an expert on the disease, when he probably knows much less about it than you. The original description of MC does not include any mention of pain, so naturally most GI docs assume that no pain is involved, and they are too hard-headed, (or maybe too dumb), to learn from their patients. It is true that some people do not experience any significant pain with MC, but for many of us, the pain is severe. Sometimes it comes in "waves", and sometimes it is persistent. For some reason, I always had the impression that most of the pain that I experienced, was due to my bloated guts pulling on the mesentary that supports them, and possibly pulling against adhesions, but that's just a guess.
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.
It is not that I have abdominal pain, but since I have MC I have very often an uncomfortable feeling in my upper abdominal. It is not my stomach, it is my colon (I think). It feels very often as if it is filled with stones, stones that won't move. It really get painful, if I wear my bra to tight . Same Idea as with to tight paints. Actually it got a bit worse after I started using entocort. I am sure it is part of the MC.
Rebecca,
I am really curious here regarding what I think I am “hearing” in you post – which I think is describing pain that is intense and rather localized, and might be described as “double-down or double-over pain”, rather than just some intense generalized abdominal discomfort.
Especially with some of the IBD’s, as well as infections diseases such as c-diff infections – some people are prone to experiencing bowel spasms, and that is what your descriptions have sounded like to me. Once the ER people have ruled out urgent situations such as appendicitis which require immediate interventions, they are not inclined to look further or try to treat/medicate for what they view as non-emergency issues, which are of a nature which they don’t understand. Therefore, they discharge you and refer you back to your Physician for further care.
Hasn’t your GI Doc ever tried giving you any kind of “anti-spasmodic” medication for these episodes? That approach is the treatment of choice, if bowel spasms are what is going on here. The steroids (Prednisone and/or Entocort) are NOT first aide for bowel spasms. Steroids meds are being used to diminish the inflammatory process of the MC. Eventually ----- whenever the MC inflamation is toned down, the spasms may also diminish, but the steroids will NOT have any immediate effect on acute colon spasms.
The tendency of gut to spasm may (and may not be) related to the MC. Basically they are 2 separate issues (which may be related). ‘Colic’ in babies is generally thought to be related to gut spasms. Anyone who has ever lived with a ‘colicy’ baby know the screams of their pain.
Medications such as Bentyl or Levsin, are a couple of commonly used meds used for their antispasmodic action in the gut, -- and there are others. Possibly you are taking some other meds (prescription or OTC), or have other health conditions which cause Docs to be leery of using these meds with you? Ask your Dr. about this. Or -- find a new Doc.
As person who has experienced this kind of issue – I know it is NOT FUN.
Gayle
I am really curious here regarding what I think I am “hearing” in you post – which I think is describing pain that is intense and rather localized, and might be described as “double-down or double-over pain”, rather than just some intense generalized abdominal discomfort.
Especially with some of the IBD’s, as well as infections diseases such as c-diff infections – some people are prone to experiencing bowel spasms, and that is what your descriptions have sounded like to me. Once the ER people have ruled out urgent situations such as appendicitis which require immediate interventions, they are not inclined to look further or try to treat/medicate for what they view as non-emergency issues, which are of a nature which they don’t understand. Therefore, they discharge you and refer you back to your Physician for further care.
Hasn’t your GI Doc ever tried giving you any kind of “anti-spasmodic” medication for these episodes? That approach is the treatment of choice, if bowel spasms are what is going on here. The steroids (Prednisone and/or Entocort) are NOT first aide for bowel spasms. Steroids meds are being used to diminish the inflammatory process of the MC. Eventually ----- whenever the MC inflamation is toned down, the spasms may also diminish, but the steroids will NOT have any immediate effect on acute colon spasms.
The tendency of gut to spasm may (and may not be) related to the MC. Basically they are 2 separate issues (which may be related). ‘Colic’ in babies is generally thought to be related to gut spasms. Anyone who has ever lived with a ‘colicy’ baby know the screams of their pain.
Medications such as Bentyl or Levsin, are a couple of commonly used meds used for their antispasmodic action in the gut, -- and there are others. Possibly you are taking some other meds (prescription or OTC), or have other health conditions which cause Docs to be leery of using these meds with you? Ask your Dr. about this. Or -- find a new Doc.
As person who has experienced this kind of issue – I know it is NOT FUN.
Gayle
Hi Rebecca,
The only doctor I see for my MC is Dr. Noel Peterson in Lake Oswego, I think we talked about him before in relation to prolotherapy for TMJ?: http://myctm.org/ He has many patients with gluten related intestinal issues. He is the one who finally convinced me to give up G and Ibu, nearly a year ago, 3 1/2 mos. before my dx/w/MC, despite my negative blood test. I wouldn't say he is an expert, but he was great about explaining things to me and further researching things I asked about from my own research. I think he's great.
I had my colonoscopy that dx'd my MC at OHSU. Frankly, the GI doc I saw had little to offer except for Entocort, she didn't argue with me about what I chose to do instead and I haven't heard from her since. My PCP, also at OHSU, doesn't seem to know much about MC either, despite the fact that her DH has Crohns and she suspects her daughter does as well. She hadn't heard that gluten could be an issue, go figure.
I did some searching to see if any of the Local GF groups that blog had any recs for GI docs and came across this: http://www.gigbranches.org/portland/ There are support groups that are very close to you and maybe you could talk to someone on this list about getting a direct recommendation for a doc.
I've never had the level of pain that Annie and others have experienced. I certainly had cramps and discomfort that accompanied the D.
The only doctor I see for my MC is Dr. Noel Peterson in Lake Oswego, I think we talked about him before in relation to prolotherapy for TMJ?: http://myctm.org/ He has many patients with gluten related intestinal issues. He is the one who finally convinced me to give up G and Ibu, nearly a year ago, 3 1/2 mos. before my dx/w/MC, despite my negative blood test. I wouldn't say he is an expert, but he was great about explaining things to me and further researching things I asked about from my own research. I think he's great.
I had my colonoscopy that dx'd my MC at OHSU. Frankly, the GI doc I saw had little to offer except for Entocort, she didn't argue with me about what I chose to do instead and I haven't heard from her since. My PCP, also at OHSU, doesn't seem to know much about MC either, despite the fact that her DH has Crohns and she suspects her daughter does as well. She hadn't heard that gluten could be an issue, go figure.
I did some searching to see if any of the Local GF groups that blog had any recs for GI docs and came across this: http://www.gigbranches.org/portland/ There are support groups that are very close to you and maybe you could talk to someone on this list about getting a direct recommendation for a doc.
I've never had the level of pain that Annie and others have experienced. I certainly had cramps and discomfort that accompanied the D.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Rebecca & Annie the pain can be quite intense with MC. I am also dealing with Crohns and am not quite sure how to determine whether the pain I am having is from Crohns or MC, overall it probably makes no difference as it can hurt quite a bit when things are flaring up. If you are keeping a food log, try to determine if any foods were the cause of the pain as elimination of the offending foods will help both how you feel and how you heal.
For me the pain was one of the first indicators that gluten and soy were triggers for the pain and that I have a sensitivity to them.
Best wishes
--Joe
For me the pain was one of the first indicators that gluten and soy were triggers for the pain and that I have a sensitivity to them.
Best wishes
--Joe
Joe
Early on one doctor put me on Cholestyramine.. within 24 hours I was in the emergency room. My stomach bloated .. I looked like I was ready to give birth! I have vomiting and D at the same time. My husband took me to the emergency room and they contacted the GI doc... the GI doc was brilliant..NOT.. he said to stop the Cholestyramine. He knew NOTHING about CC. He was treating me with his IBS arsenal.. all of which failed.
As far as prednisone and entocort... I was on prednisone for a back injury.. and taking entocort.. doctor knew about the entocort when he put me on prednisone. My blood pressure shot sky high..ended up in emergency room..they thought I was about to have a heart attack! I will never take prednisone again!
We are all different but everyone should be careful with prednisone.
grannyh
As far as prednisone and entocort... I was on prednisone for a back injury.. and taking entocort.. doctor knew about the entocort when he put me on prednisone. My blood pressure shot sky high..ended up in emergency room..they thought I was about to have a heart attack! I will never take prednisone again!
We are all different but everyone should be careful with prednisone.
grannyh