Hello Everyone!
I will try as best as possible to keep this post concise and not write a book. My name is Kelly and I am 27 years old. Since 2005 I have been having GI issues. It first started out as abdominal pain and has progressing become worse. To make a long story short I saw my family Doc in Dec. and he put me on Pred. (60mg). Was off of that in a few weeks and felt great for about 2-3 weeks and then it all went back downhill again-- and he put me back on the Pred. I then decided to research and have found a wonderful GI in the area that I am currently seeing. In our consultation he said that it could be Crohn's, microscopic colitis or severe IBS. I honestly do not believe I have IBS, but I will tell you my symptoms and results of my tests and just want your input on how you were diagnosed and what you experience with Microscopic Colitis.
* Constant diarrhea (very loose to watery bowels). While on high doses of Pred. I had normal bowels, but when I taper off of it, the diarrhea becomes intermittent.
*Abdominal pain (this can range from crampy to severe. When I get that absolute sudden "need to go right this second" urge the pain is often in my lower Ab area. It is not always relieved by going to the bathroom)
*This often comes in "waves". When it hits me back-- it really hits me bad and I have the most symptoms
* Joint pain (often in my lower back and that can be very severe in the mornings to the point where it is stiff and takes me about 15 minutes to get out of bed. While on high doses of Pred this stopped, but when taper this comes back. I can also get joint pain in my knees, shoulders, wrists and hands-- but not as much as my lower back pain)
* I lost 30 pounds in no time flat because I just could not (and would not for fear of pain) eat.
*Nausea and/or vomiting (the nausea and vomiting are when I am at my worst)
*Fatigue and exhaustion (never know some days when I am going to feel as if I have some energy or when I want to just take it easy. When things are at their worst there is horrible exhaustion)
*Fever (when things are at their worst-- usually 100-102 range)
Tests:
My family Doc did a C-reactive protein after I was on the Pred for 3 weeks and it came back as I believe 2.4, but the GI I am seeing did say we cannot take that at face value because I was on the Pred. and that would lower it along with the sedimentation rate (which I believe mine was 5)
Family Doc checked for anemia and my numbers came back in the middle
This new GI Doc has been wonderful and I have had so much done in the past two weeks.
Stools sampled were negative for parasites.
Did the colonoscopy last week and visually things looked well-- he did take a lot of biopsies and yesterday the nurse at his office said she could not say much because he is out of town, but the biopsy of my colonoscopy came back as non-specific inflammation.
Had a upper GI endoscopy-- did find a hiatal hernia, biopsy came back as normal.
Yesterday I just had the pill cam done. Was told it would take 1-3 days to pass from my system-- I passed the pill in 6 hours, even before I was suppose to drop off the transmitter. I have to wait about 2 weeks since GI Doc is out of town for him to look at the results and see if we see anything in my small bowel--- or anywhere through my whole GI tract for that matter since it went so quickly.
If anyone could shed some light on what they experience with microscopic colitis that would be so greatly appreciated. Also how was it diagnosed and could you tell me your opinion on non-specific inflammation. My hope is within the next two weeks I will find out a little more. I really do not believe what I am going through is IBS-- there is just too much and what I am going through is almost dehabiliting at times, plus from what I understand IBS does not cause weight loss, fevers, joint pain and the ab pain often goes away after a bowel movement.
Thank you so much, look forward to getting to know everyone and sorry if this post is too long!
Kelly
New here, have some questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Kellyerin222
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Hi Kelly,
Welcome to the board. It's a heck of a note that you have to wait a couple of weeks for your doc to return, but I can tell you right off the bat that your symptoms match what I went through, almost exactly, and that's true for many/most of us here. The only difference in symptoms that I can see, (compared with me), is that my neck was extremely stiff and sore, (rather than my lower back, though my lower back was also sore, just not nearly as bad as my neck).
The fact that the pill camera made the complete trip in six hours, exactly matches what many of us experience on turnaround time, when we have a reaction.
Non-specific inflammation sounds like a visual observation, rather than an opinion based on examination of the biopsy slides. Surely the pathologist is better at his/her job than that. If the slides actually don't show the markers of MC, (lymphocytic infiltration, possibly combined with thickened collagen layers in the lamina propria), then the most likely source of inflammation would be something like C. diff, for example - did they test you for that?
Again, welcome to the group. If the pathologist knows his/her business, I have a hunch your diagnosis will almost certainly be Microscopic Colitis, (MC).
Tex
Welcome to the board. It's a heck of a note that you have to wait a couple of weeks for your doc to return, but I can tell you right off the bat that your symptoms match what I went through, almost exactly, and that's true for many/most of us here. The only difference in symptoms that I can see, (compared with me), is that my neck was extremely stiff and sore, (rather than my lower back, though my lower back was also sore, just not nearly as bad as my neck).
The fact that the pill camera made the complete trip in six hours, exactly matches what many of us experience on turnaround time, when we have a reaction.
Non-specific inflammation sounds like a visual observation, rather than an opinion based on examination of the biopsy slides. Surely the pathologist is better at his/her job than that. If the slides actually don't show the markers of MC, (lymphocytic infiltration, possibly combined with thickened collagen layers in the lamina propria), then the most likely source of inflammation would be something like C. diff, for example - did they test you for that?
Again, welcome to the group. If the pathologist knows his/her business, I have a hunch your diagnosis will almost certainly be Microscopic Colitis, (MC).
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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Kellyerin222
- Adélie Penguin
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- Joined: Fri Feb 29, 2008 12:35 pm
- Location: Granger, Indiana
- Contact:
Thank You Tex
Tex,
Thank you for your rapid reply. I have been doing some searching on previous post and reading some of your posts and you do seem very knowledgeable in MC.
I am not very happy that it came back as "nonspecific inflammation", but unfortunately I was not able to see the report myself, nor was the nurse allowed to really say too much because my GI has yet to see it because he is out of town. She said to me "You never know, sometimes the prep itself can cause the colon to become inflamed", but from my personal judgment I do not believe the inflammation showed up because of the prep-- there is just too much that has added up. I am once again playing the waiting game because GI is out of town, but on the other hand I will say he is a fantastic GI and I did research before I choose one. My family Doc referred me to a GI in his practice (he did not specifically only deal with GI issues), I saw him once and I could tell he was not taking me seriously. Handed me a prescription for Questran and I had a really bad experience with that and immediately said-- ok that's enough I want to see someone who knows what they are talking about.
I am unsure if I have had a C-diff done. If it is tested through a stool sample then I might have-- and will check into this. The GI did do a test to check for Celiac Disease and that did come back negative.
I kept my first post short because I did not wish to sound overwhelming, but this has really just disrupted my life in many ways. I am a second year full time Psychology major and in January when I went into another (I guess you could say flare) that was so severe I missed 4 days of classes and 3 exams (Professors said no to make up exams) and there was no way for me to continue. I was so ill that my husband had to take 3 days off of work to tend to our children because I was either in the master bathroom or in bed and it was pretty severe. I realized at this point that something has to be going on and I had to withdraw from my college semester. I hold a 4.0 GPA and it just about crushed me for a week to do this, but I realize that right now my health needs to be the main concern and then once we get this figured out I can proceed back with my education.
I really wondered about the pill cam and how fast it went through me! I have tried to do research on rapid transit time with the pill cam, but because it is a newer technology it was limited, so was actually relieved to see that others with MC have had the same thing happen. I was told by nurse "except to see it in your bowels 1-3 days after the procedure". Lo and behold 6 hours after I swallowed it, my toilet was flashing from the pill, lol. I was only half shocked because I know things just go right through me. On good days I can have 3-4 bowel movements a day, when things get very severe it can range up toward 20 times a day. Often joke with my husband I should remodel our bathroom, put in a TV, how about a mini-fridge and heck invent a toilet pillow, lol.
On my first consult with the GI I did ask with the limited amount of knowledge he had in our first consult what it could be and when he stated Crohn's, MC and IBS-- I did tell him I do not think I have IBS. The fact that I saw improvement with Pred. has to mean there is inflammation somewhere and it was the first time in a very long time I had a normal bowel movement. I kind of ruled out ulcerative colitis because I do not have blood in the bowel (do have mucus at times) and to hear microscopic colitis was a new terminology for me.
I guess as it stands right now I need to see if he sees anything visually on the pill cam-- hopefully it did not go too fast for him to pick up something, lol. If he does not see anything visually I think that rules out Crohn's and would lead more towards MC. This would be fitting with the joint pain, fevers, etc. I am a researcher at heart and did find one journal article that talked about nonspecific inflammation and MC. I have tried to be very pro-active in my healthcare now and it is hilarious when I have GI books and a dictionary/encyclopedia side by side so I can try to understand all the medical terminology of the GI tract and physiology aspects of it. At one point in time I was almost for sure I would be labeled as a hypochondriac and then felt so perplexed when visually my colonoscopy looked good.
Again, thank you for the welcome and rapid reply time. I do not wish to have IBD, but at this point in time I just want to know what it is so I can take the next step in trying to control this and live a healthy life.
Kelly
Thank you for your rapid reply. I have been doing some searching on previous post and reading some of your posts and you do seem very knowledgeable in MC.
I am not very happy that it came back as "nonspecific inflammation", but unfortunately I was not able to see the report myself, nor was the nurse allowed to really say too much because my GI has yet to see it because he is out of town. She said to me "You never know, sometimes the prep itself can cause the colon to become inflamed", but from my personal judgment I do not believe the inflammation showed up because of the prep-- there is just too much that has added up. I am once again playing the waiting game because GI is out of town, but on the other hand I will say he is a fantastic GI and I did research before I choose one. My family Doc referred me to a GI in his practice (he did not specifically only deal with GI issues), I saw him once and I could tell he was not taking me seriously. Handed me a prescription for Questran and I had a really bad experience with that and immediately said-- ok that's enough I want to see someone who knows what they are talking about.
I am unsure if I have had a C-diff done. If it is tested through a stool sample then I might have-- and will check into this. The GI did do a test to check for Celiac Disease and that did come back negative.
I kept my first post short because I did not wish to sound overwhelming, but this has really just disrupted my life in many ways. I am a second year full time Psychology major and in January when I went into another (I guess you could say flare) that was so severe I missed 4 days of classes and 3 exams (Professors said no to make up exams) and there was no way for me to continue. I was so ill that my husband had to take 3 days off of work to tend to our children because I was either in the master bathroom or in bed and it was pretty severe. I realized at this point that something has to be going on and I had to withdraw from my college semester. I hold a 4.0 GPA and it just about crushed me for a week to do this, but I realize that right now my health needs to be the main concern and then once we get this figured out I can proceed back with my education.
I really wondered about the pill cam and how fast it went through me! I have tried to do research on rapid transit time with the pill cam, but because it is a newer technology it was limited, so was actually relieved to see that others with MC have had the same thing happen. I was told by nurse "except to see it in your bowels 1-3 days after the procedure". Lo and behold 6 hours after I swallowed it, my toilet was flashing from the pill, lol. I was only half shocked because I know things just go right through me. On good days I can have 3-4 bowel movements a day, when things get very severe it can range up toward 20 times a day. Often joke with my husband I should remodel our bathroom, put in a TV, how about a mini-fridge and heck invent a toilet pillow, lol.
On my first consult with the GI I did ask with the limited amount of knowledge he had in our first consult what it could be and when he stated Crohn's, MC and IBS-- I did tell him I do not think I have IBS. The fact that I saw improvement with Pred. has to mean there is inflammation somewhere and it was the first time in a very long time I had a normal bowel movement. I kind of ruled out ulcerative colitis because I do not have blood in the bowel (do have mucus at times) and to hear microscopic colitis was a new terminology for me.
I guess as it stands right now I need to see if he sees anything visually on the pill cam-- hopefully it did not go too fast for him to pick up something, lol. If he does not see anything visually I think that rules out Crohn's and would lead more towards MC. This would be fitting with the joint pain, fevers, etc. I am a researcher at heart and did find one journal article that talked about nonspecific inflammation and MC. I have tried to be very pro-active in my healthcare now and it is hilarious when I have GI books and a dictionary/encyclopedia side by side so I can try to understand all the medical terminology of the GI tract and physiology aspects of it. At one point in time I was almost for sure I would be labeled as a hypochondriac and then felt so perplexed when visually my colonoscopy looked good.
Again, thank you for the welcome and rapid reply time. I do not wish to have IBD, but at this point in time I just want to know what it is so I can take the next step in trying to control this and live a healthy life.
Kelly
Hi Kelly....I'm fairly new on this board, but your symptoms sure do match mine. 
When they finally did a biopsy during the colonoscopy they found the LC...I am on Entocort and got my life back. Hang in there...it is a shame you have to wait for your GI doc to return....this forum is a real life saver for sure....keep reading and researching ...knowledge is power. Being in the dark is not!!
Sunny
When they finally did a biopsy during the colonoscopy they found the LC...I am on Entocort and got my life back. Hang in there...it is a shame you have to wait for your GI doc to return....this forum is a real life saver for sure....keep reading and researching ...knowledge is power. Being in the dark is not!! SunnyHi Kelly,
Funny, my name is Erin Kelly!
My story is identical to yours..symptoms, tests, etc. I had all the same test, everything came back 'normal' except with my first Colonoscopy in October 2006 my biopsies came back abnormal giving me the diagnosis of MC. I had a lot of problems with my original GI and her treatments (She put me on Asacol and when that didn't make my symptoms go away 100% she said it was just IBS and to live with it) so i found the number 1 GI doctor in my state and made an appointment with him for a second opinion. He did the pillcam (and don't feel bad, mine went through in only 2 hours, tell me that wasn't a surprise!) and again, found nothing.
My new GI then put me on Entocort and it worked great for the first two weeks then steadily went downhill from there. I am gluten intolerant and i am on a dairy and gluten free diet (i also don't drink any caffeine, soda, etc). My doctor still seems to think i have Crohn's as well (mostly due to my fevers, joint pain, mouth sores and where the pain is located in my abdomin) and he has scheduled me for a second colonoscopy (actually this coming tuesday) as he does not trust the one that the prior doc had done (long story there). I am going into this hoping he can find something but i just have that deep down feeling that he won't and it will be back to square one again.
This board is wonderful and has lots of great advice. I am 37 years old, have a 6 year old daughter, 16 & 18 year old stepsons and work full time. It has really disrupted my life for sure as i have been going through this 'flare' for 8 months now. My husband and i even had to cancel our honeymoon trip to Ireland because there is no way i could travel feeling this way.
Most people on this board have found great relief in diet, Entocort or a combination of the two, but everyone is different and i happen to be a 'stubborn case'. I am sure you will find some help!
Funny, my name is Erin Kelly!
My story is identical to yours..symptoms, tests, etc. I had all the same test, everything came back 'normal' except with my first Colonoscopy in October 2006 my biopsies came back abnormal giving me the diagnosis of MC. I had a lot of problems with my original GI and her treatments (She put me on Asacol and when that didn't make my symptoms go away 100% she said it was just IBS and to live with it) so i found the number 1 GI doctor in my state and made an appointment with him for a second opinion. He did the pillcam (and don't feel bad, mine went through in only 2 hours, tell me that wasn't a surprise!) and again, found nothing.
My new GI then put me on Entocort and it worked great for the first two weeks then steadily went downhill from there. I am gluten intolerant and i am on a dairy and gluten free diet (i also don't drink any caffeine, soda, etc). My doctor still seems to think i have Crohn's as well (mostly due to my fevers, joint pain, mouth sores and where the pain is located in my abdomin) and he has scheduled me for a second colonoscopy (actually this coming tuesday) as he does not trust the one that the prior doc had done (long story there). I am going into this hoping he can find something but i just have that deep down feeling that he won't and it will be back to square one again.
This board is wonderful and has lots of great advice. I am 37 years old, have a 6 year old daughter, 16 & 18 year old stepsons and work full time. It has really disrupted my life for sure as i have been going through this 'flare' for 8 months now. My husband and i even had to cancel our honeymoon trip to Ireland because there is no way i could travel feeling this way.
Most people on this board have found great relief in diet, Entocort or a combination of the two, but everyone is different and i happen to be a 'stubborn case'. I am sure you will find some help!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
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Kellyerin222
- Adélie Penguin
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- Joined: Fri Feb 29, 2008 12:35 pm
- Location: Granger, Indiana
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Thank you everyone
Sunny: Hello and Thank you and I am glad that the Entocort has helped you. You are right about knowledge. I have always been the type of person to enjoy learning, I wish it was under different circumstances this time, but I am certainly learning alot more about the GI track then I ever thought I would have!
ErinD: Ironic about the names,haha. I am sorry the one GI said you had IBS and just live with it. Honestly, not sure how I will respond if he comes back and said IBS for me because I know I cannot just "live with" what I am going through. I tried for so long to ignore things and act like there was not a problem and then it got to the point where I could no longer function.
Wow, 2 hours and the pill cam was expelled! That is a super rapid transit time and I can imagine the surprise it would have been. As far as your Doc still thinking you have Crohn's-- was there anything visual for him/her to think this? From the research I have been doing and talking to people who have been diagnosed with Crohn's there usually is visual pathologies, among the strictures, fistulas, narrowing intestines, grandulas (sp?), etc. I have only had mouth sores a few times in the past two years, but the one thing is I was not on any meds and I developed oral thrush 2x. Then since being on the Prednisone at a high dose I developed it again (immune system is in the tank for the Pred) I looked it up and there is a correlation between oral thrush and compromised immune system. One thing and this may have nothing to do with the GI problems, but the past two years my oral health has seriously declined. I never had really bad teeth, but in Jan when I went through the serious flare I developed the worst tooth pain that landed me in the ER on a weekend. I went to my dentist thinking I would get 1 tooth extracted and then upon x-rays he said I had abscesses that ran along my lower jaw on the left and right side. Needless to say I was sent to an oral surgeon to get 3 lower molars and 2 lower right molars extracted. I was on Prednisone at that time and it could be I got an infection and body was not able to fight it off.
I do hope your colonoscopy on Tuesday goes well and do update on what goes on. I am sorry you had to cancel your trip and I completely sympathize with you on not being able to do it. I have been married for 10 years (wonderful husband) and have two children, daughter who is 4 and son who is 10. They surely keep me busy and at times it can be exhausting when they have massive energy and I feel so fatigued, but just to see their smiles and laughs has pulled me through some rough times lately. Thank you for the welcome and this does seem like a wonderful board!
Trace: Hi and thanks for the response. The back pain is a bear sometimes huh? Beside the ab pain I would say that is the one thing that will bring me to tears. It is usually the worst in the morning right as I wake up. I have found heating pads, hot showers, husband massaging and just trying to slowly move about works. When all else fails Dr did prescribe me Vicodin, which helps. I notice it can disappear once I get moving, but if I stand or sit in one place too long it can come right back. It was amazing when I was on 60 mg of Pred how the back pain disappeared and I breathed a huge sigh of relief-- only now that I am taping (on 5mg) it has come right back. The Pred. though has caused some awful side effects and because I have been on it now for just about 2 months I have a lovely round face from it and have gained a ton of weight. With the back pain, the morning pain always seems very sharp, severe, acute pain and the afternoon/evening pain can be a dull constant ache. I was hoping once I get this figured out with my GI system to ask for tests on my lower back to confirm/see if it is arthritis. Thanks with the good luck and good luck to you as well!
Kelly
ErinD: Ironic about the names,haha. I am sorry the one GI said you had IBS and just live with it. Honestly, not sure how I will respond if he comes back and said IBS for me because I know I cannot just "live with" what I am going through. I tried for so long to ignore things and act like there was not a problem and then it got to the point where I could no longer function.
Wow, 2 hours and the pill cam was expelled! That is a super rapid transit time and I can imagine the surprise it would have been. As far as your Doc still thinking you have Crohn's-- was there anything visual for him/her to think this? From the research I have been doing and talking to people who have been diagnosed with Crohn's there usually is visual pathologies, among the strictures, fistulas, narrowing intestines, grandulas (sp?), etc. I have only had mouth sores a few times in the past two years, but the one thing is I was not on any meds and I developed oral thrush 2x. Then since being on the Prednisone at a high dose I developed it again (immune system is in the tank for the Pred) I looked it up and there is a correlation between oral thrush and compromised immune system. One thing and this may have nothing to do with the GI problems, but the past two years my oral health has seriously declined. I never had really bad teeth, but in Jan when I went through the serious flare I developed the worst tooth pain that landed me in the ER on a weekend. I went to my dentist thinking I would get 1 tooth extracted and then upon x-rays he said I had abscesses that ran along my lower jaw on the left and right side. Needless to say I was sent to an oral surgeon to get 3 lower molars and 2 lower right molars extracted. I was on Prednisone at that time and it could be I got an infection and body was not able to fight it off.
I do hope your colonoscopy on Tuesday goes well and do update on what goes on. I am sorry you had to cancel your trip and I completely sympathize with you on not being able to do it. I have been married for 10 years (wonderful husband) and have two children, daughter who is 4 and son who is 10. They surely keep me busy and at times it can be exhausting when they have massive energy and I feel so fatigued, but just to see their smiles and laughs has pulled me through some rough times lately. Thank you for the welcome and this does seem like a wonderful board!
Trace: Hi and thanks for the response. The back pain is a bear sometimes huh? Beside the ab pain I would say that is the one thing that will bring me to tears. It is usually the worst in the morning right as I wake up. I have found heating pads, hot showers, husband massaging and just trying to slowly move about works. When all else fails Dr did prescribe me Vicodin, which helps. I notice it can disappear once I get moving, but if I stand or sit in one place too long it can come right back. It was amazing when I was on 60 mg of Pred how the back pain disappeared and I breathed a huge sigh of relief-- only now that I am taping (on 5mg) it has come right back. The Pred. though has caused some awful side effects and because I have been on it now for just about 2 months I have a lovely round face from it and have gained a ton of weight. With the back pain, the morning pain always seems very sharp, severe, acute pain and the afternoon/evening pain can be a dull constant ache. I was hoping once I get this figured out with my GI system to ask for tests on my lower back to confirm/see if it is arthritis. Thanks with the good luck and good luck to you as well!
Kelly
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annie oakley
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HI there so sorry you had to find us but very glad you did. I joined this group in 2001 (correct me if I am wrong Tex, or maybe that was including the old board) Anyway>>>>Thsi is a great place for knowledge. Everyone here has something to contribute. We are like a family, I have been off medication for about three years I think. But I keep coming back here because of the family here, This group and extsended family has helped me through some of the roughest times I have ever had. Welcome to our home! Love Oma
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
Kelly,
It's true that some preps can corrupt the colonoscopy test results, but one would hope that they would have had the, (I'm tempted to say "good sense" here), foresight, to provide you with a prep solution that is not known for confounding the test. It's not like they've never done one before. LOL.
Some GI docs, apparently make their own diagnoses, regardless of what the pathologist report says. If they really know their stuff, they should be able to do that, the majority of them, unfortunately, don't know near enough about the disease to even be able to treat it correctly, let alone diagnose it properly. I get the impression from your description of your new GI doc, that he knows what he's doing, so I'm optimistic that he will do a good job.
Yes, a C. diff diagnosis is based on a stool culture, so it's certainly possible that this may already have been checked. If he sees no evidence of MC, though, I would certainly request a second test for C. diff, since it is frequently missed during culture tests. Apparently that test is a rather imperfect science, (it may depend on the skills of the person interpreting the results).
Apparently there is a somewhat wide range for what is considered to be a "normal" transit time, and it varies from person to person, and possibly may vary by diet, but the research I've seen, shows that a typical total time for most "normal" individuals is somewhere around 30 hours, more or less. Of course, now that we have an IBD, we no longer have normal digestive systems, and that will always be true, so that time may be off a bit for some of us, (and, of course, it will be way off for any of us, if we are having a reaction).
I don't see a thing wrong with your logic, concerning your thoughts on whether you might or might not have Crohn's, MC, or IBS. Also, the fact that you are not passing any blood, is a good indication that you probably do not have C. diff. While it's true that C. diff can cause mucus in the stool, that's also quite common with MC. The excess mucus production is the body's way of trying to protect the delicate lining of the colon from whatever is in the fecal stream that is causing the inflammation, and it's common with IBDs.
I believe you made the right decision to withdraw for the semester. As tough as it is to maintain a 4.0 GPA, trying to do that while living with the brain fog, (to say nothing of the physical constraints), that typically goes with MC, would be a daunting task, for sure.
Unless your new GI doc is one of the best in the country, you will probably soon know more about MC, than he does, if you continue reading and researching, and asking questions. (Don't tell him that, though, because most of them get rather testy if a patient tells them something such as that. LOL).
I see that you have already received a number of very good, helpful responses. That's the best part of this board - no one understands MC like someone who actually has it. Unless you actually have it, it's almost impossible to visualize just how debilitating, and life-altering it can be.
Best of luck to you as you develop your treatment program, and search for the best path that will allow you to get your life back. Please feel free to ask anything. Nothing shocks us anymore, after we've had this disease for a while - MC can be very humbling, to say the least.
Tex
P S Yes, MC seems to be connected with many other autoimmune issues. Also, mouth sores, tooth problems, and even TMJ, (temporomandibular joint problems), are somewhat common.
It's true that some preps can corrupt the colonoscopy test results, but one would hope that they would have had the, (I'm tempted to say "good sense" here), foresight, to provide you with a prep solution that is not known for confounding the test. It's not like they've never done one before. LOL.
Some GI docs, apparently make their own diagnoses, regardless of what the pathologist report says. If they really know their stuff, they should be able to do that, the majority of them, unfortunately, don't know near enough about the disease to even be able to treat it correctly, let alone diagnose it properly. I get the impression from your description of your new GI doc, that he knows what he's doing, so I'm optimistic that he will do a good job.
Yes, a C. diff diagnosis is based on a stool culture, so it's certainly possible that this may already have been checked. If he sees no evidence of MC, though, I would certainly request a second test for C. diff, since it is frequently missed during culture tests. Apparently that test is a rather imperfect science, (it may depend on the skills of the person interpreting the results).
Apparently there is a somewhat wide range for what is considered to be a "normal" transit time, and it varies from person to person, and possibly may vary by diet, but the research I've seen, shows that a typical total time for most "normal" individuals is somewhere around 30 hours, more or less. Of course, now that we have an IBD, we no longer have normal digestive systems, and that will always be true, so that time may be off a bit for some of us, (and, of course, it will be way off for any of us, if we are having a reaction).
I don't see a thing wrong with your logic, concerning your thoughts on whether you might or might not have Crohn's, MC, or IBS. Also, the fact that you are not passing any blood, is a good indication that you probably do not have C. diff. While it's true that C. diff can cause mucus in the stool, that's also quite common with MC. The excess mucus production is the body's way of trying to protect the delicate lining of the colon from whatever is in the fecal stream that is causing the inflammation, and it's common with IBDs.
I believe you made the right decision to withdraw for the semester. As tough as it is to maintain a 4.0 GPA, trying to do that while living with the brain fog, (to say nothing of the physical constraints), that typically goes with MC, would be a daunting task, for sure.
Unless your new GI doc is one of the best in the country, you will probably soon know more about MC, than he does, if you continue reading and researching, and asking questions. (Don't tell him that, though, because most of them get rather testy if a patient tells them something such as that. LOL).
I see that you have already received a number of very good, helpful responses. That's the best part of this board - no one understands MC like someone who actually has it. Unless you actually have it, it's almost impossible to visualize just how debilitating, and life-altering it can be.
Best of luck to you as you develop your treatment program, and search for the best path that will allow you to get your life back. Please feel free to ask anything. Nothing shocks us anymore, after we've had this disease for a while - MC can be very humbling, to say the least.
Tex
P S Yes, MC seems to be connected with many other autoimmune issues. Also, mouth sores, tooth problems, and even TMJ, (temporomandibular joint problems), are somewhat common.
Hi Kelly,
You might also ask your Dr about testing for Small Intestinal Bacterial Overgrowth, many similar symptoms to MC.
Where is your abdominal pain if you were to point to it? Does anything else help, even temporarily with your symptoms? Do you have bloating? Gas? Any other lab results abnormal or near abnormal?
Thanks,
Mike
You might also ask your Dr about testing for Small Intestinal Bacterial Overgrowth, many similar symptoms to MC.
Where is your abdominal pain if you were to point to it? Does anything else help, even temporarily with your symptoms? Do you have bloating? Gas? Any other lab results abnormal or near abnormal?
Thanks,
Mike
Hi Kelly and Welcome
Good to see you have a GI that really seems to be doing everything that he can to help you and reslove these problems. Your symptoms sound exactly the same as mine and most others I have read on the board (especially the transit time through the GI tract, I had this problem with food before steriods). Firstly I was on predisone for 6 weeks and now are Entocort until I see my GI again around the end of April. The steriods have stopped the D
and I am hoping it continues however, I would say the Entocort is much easier to take on a longer term basis than the predisone!
Hope you get a DX soon in the meantime take good care
Good to see you have a GI that really seems to be doing everything that he can to help you and reslove these problems. Your symptoms sound exactly the same as mine and most others I have read on the board (especially the transit time through the GI tract, I had this problem with food before steriods). Firstly I was on predisone for 6 weeks and now are Entocort until I see my GI again around the end of April. The steriods have stopped the D
and I am hoping it continues however, I would say the Entocort is much easier to take on a longer term basis than the predisone!Hope you get a DX soon in the meantime take good care
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Kellyerin222
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Tex: Thank you for your reply. The prep I did was Fleet (phospho soda) total of 3 ounces and 2 ducolax tabs. I tried to look up inflammation pertaining to colonoscopy prep, but did not have much luck in this area (including journal articles). You think a GI's office would have the experience to prevent this from happening, lol. Yep, just looked at my tests and C-diff was negative, but I did see from your prior posts that this test is a touch and go and one that you may need to retest.
I do feel confident that I did good research and found a good GI. Just yesterday my husband saw his family physician because he is ill and told him who I am seeing and his Doc (who is a very well known prestige Doc in this area) said who I am seeing is one of the best, a fantastic person and Doctor; which, does ease my mind a little more. Just from first impressions, time during on consult and the fact that he has arranged so many tests, his timeline and the tests he has performed I do feel as of this time he is a good one. I am thinking he is familiar with MC because during our consult he said I could have this and I had not even heard of MC before this date. Though from what I am gathering and what you have said the GI's do have less knowledge of MC compared to Crohn's, Ulcerative Colitis and such.
Thank you for your information and supportive replies and I am very glad I did find this board-- you all seem to be a wonderful group of people!
Pat: Thank you for your support. One of my downfalls has always been patience and this is something I am struggling with and learning each day, lol.
Mike: I will ask my GI about small intestinal bacterial overgrowth. I am very curious to see if he sees anything visually on the pill cam. The abdominal pain I have can be in the upper- middle and lower part of my ab-- but it is more towards the lower part (between belly button and pubic area). When I have that sudden urgency and it is severe it is always my lower abdominal area. I do have quite a bit of bloating and gas, but the pain is not always relieved when I pass gas, nor when I have a bowel movement.
As far as if anything helps, I have taken Imodium and that does not touch the diarrhea for me. I was prescribed Lomotil (sp?) by my family Doc and that did work for the diarrhea. The ab pain I just live through and use heating pads and when it becomes severe or to the point I am very edgy because of it I take Vicodin for the pain. I use to take Ibuprofen a lot, but once I learned it could aggravate IBD and I was unsure if I had IBD I did completely stop taking any ibuprofen (last time I took any of that was first part of December 2007). The Prednisone is what works for me. When I was on a high dose all of my symptoms went normal-- normal bowels, no ab pain, joint pain went away-- but as I taper and get on lower dose of Pred. they creep back up and go intermittent. When I did my first round of Prednisone and then tapered off I felt so wonderful for about 2-3 weeks and then it was like it all hit me again and I went back into a serious flare. Thank you for your reply!
mini: Thank you for the welcome and your reply. I really cannot wait until I get off of the Prednisone-- wow have I had some serious side effects from this drug. I am hoping when we figure out what is wrong I will be put on something (such as Entocort) that is easier on your system. On high doses of Pred (and I am sure others can relate with Pred), wow was that horrible. I have gained a lot of weight on this drug, lovely round face, mood swings, appetite that is outstanding, my hands would shake uncontrollably, insomnia, etc. I think I will do a happy dance when I finally get off of this med, lol. Thank you again and I hope all goes well for you in April when you see your GI!
Kelly
I do feel confident that I did good research and found a good GI. Just yesterday my husband saw his family physician because he is ill and told him who I am seeing and his Doc (who is a very well known prestige Doc in this area) said who I am seeing is one of the best, a fantastic person and Doctor; which, does ease my mind a little more. Just from first impressions, time during on consult and the fact that he has arranged so many tests, his timeline and the tests he has performed I do feel as of this time he is a good one. I am thinking he is familiar with MC because during our consult he said I could have this and I had not even heard of MC before this date. Though from what I am gathering and what you have said the GI's do have less knowledge of MC compared to Crohn's, Ulcerative Colitis and such.
Thank you for your information and supportive replies and I am very glad I did find this board-- you all seem to be a wonderful group of people!
Pat: Thank you for your support. One of my downfalls has always been patience and this is something I am struggling with and learning each day, lol.
Mike: I will ask my GI about small intestinal bacterial overgrowth. I am very curious to see if he sees anything visually on the pill cam. The abdominal pain I have can be in the upper- middle and lower part of my ab-- but it is more towards the lower part (between belly button and pubic area). When I have that sudden urgency and it is severe it is always my lower abdominal area. I do have quite a bit of bloating and gas, but the pain is not always relieved when I pass gas, nor when I have a bowel movement.
As far as if anything helps, I have taken Imodium and that does not touch the diarrhea for me. I was prescribed Lomotil (sp?) by my family Doc and that did work for the diarrhea. The ab pain I just live through and use heating pads and when it becomes severe or to the point I am very edgy because of it I take Vicodin for the pain. I use to take Ibuprofen a lot, but once I learned it could aggravate IBD and I was unsure if I had IBD I did completely stop taking any ibuprofen (last time I took any of that was first part of December 2007). The Prednisone is what works for me. When I was on a high dose all of my symptoms went normal-- normal bowels, no ab pain, joint pain went away-- but as I taper and get on lower dose of Pred. they creep back up and go intermittent. When I did my first round of Prednisone and then tapered off I felt so wonderful for about 2-3 weeks and then it was like it all hit me again and I went back into a serious flare. Thank you for your reply!
mini: Thank you for the welcome and your reply. I really cannot wait until I get off of the Prednisone-- wow have I had some serious side effects from this drug. I am hoping when we figure out what is wrong I will be put on something (such as Entocort) that is easier on your system. On high doses of Pred (and I am sure others can relate with Pred), wow was that horrible. I have gained a lot of weight on this drug, lovely round face, mood swings, appetite that is outstanding, my hands would shake uncontrollably, insomnia, etc. I think I will do a happy dance when I finally get off of this med, lol. Thank you again and I hope all goes well for you in April when you see your GI!
Kelly
Not sure if SIBO would show on a pill cam, perhaps the inflamation associated with it might. Normally would be more inflamation in the ileum. Yeah, the most severe pain I had was a 4 or 5 inches below my belly button. It was a severe, sharp stabbing pain. Felt like someone had a knife in there and was twisting it around. At times I thought I would pass out from the pain. If I were to venture a guess based on anatomy I'd say it's the ileum. And the pain didn't always subside with passing gas or a BM, though sometimes it did.Kellyerin222 wrote:Mike: I will ask my GI about small intestinal bacterial overgrowth. I am very curious to see if he sees anything visually on the pill cam. The abdominal pain I have can be in the upper- middle and lower part of my ab-- but it is more towards the lower part (between belly button and pubic area). When I have that sudden urgency and it is severe it is always my lower abdominal area. I do have quite a bit of bloating and gas, but the pain is not always relieved when I pass gas, nor when I have a bowel movement.
Yeah it's good to stay away from ibuprofen or any NSAIDs for that matter. Not good for the gut at all. I never had to take Prednisone or any steroid like that, Dr said I wasn't that bad, and I think he was right. I didn't seem to have it as bad as most folks here, mine tended to be more towards the constipation side of things, I'd get constipated and then eventually it would be too much or too toxic and then I'd get a significant amount of diarrhea for a shorter amount of time then once it passed it would start over again. This I believe was mainly due to the type of bacteria that was causing my SIBO, they were methane producers which slow down gut motility, and seem to be a lot tougher to get rid of.As far as if anything helps, I have taken Imodium and that does not touch the diarrhea for me. I was prescribed Lomotil (sp?) by my family Doc and that did work for the diarrhea. The ab pain I just live through and use heating pads and when it becomes severe or to the point I am very edgy because of it I take Vicodin for the pain. I use to take Ibuprofen a lot, but once I learned it could aggravate IBD and I was unsure if I had IBD I did completely stop taking any ibuprofen (last time I took any of that was first part of December 2007). The Prednisone is what works for me. When I was on a high dose all of my symptoms went normal-- normal bowels, no ab pain, joint pain went away-- but as I taper and get on lower dose of Pred. they creep back up and go intermittent. When I did my first round of Prednisone and then tapered off I felt so wonderful for about 2-3 weeks and then it was like it all hit me again and I went back into a serious flare. Thank you for your reply!
Have you found any foods to be associated with feeling better or worse GI wise? Have you taken any antibiotics since this all started? If so how did you feel, even in the short term?
You and your Dr will figure this out I'm sure.
Thanks,
Mike
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Kellyerin222
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Mike: If it is MC, I am not sure he would see anything on the pill cam. I am thinking if he does see something, then this could be related to Crohn's, but I would be jumping the gun to concisely say that-- so trying to wait patiently
I can agree with the severe lower ab. pain feeling as if someone stuck you with a knife and was twisting it around. When I would get severe pain I would basically be doubled over or lying in the fetal position and get cold sweats. Same here with pain being relieved with passing gas and bowel movement-- sometimes it did relieve the pain and other times it did not.
I am sorry to hear about the constipation, then diarrhea and then cycle starting again. I am sure that would be exhausting in itself.
My symptoms started two and half years ago (June 2005). At that time all I had was abdominal pain and diarrhea-- but the diarrhea was not at a high intensity. I did go and see one GI and he really did not seem concerned. I had one colonoscopy, in which in recovery he came back and said all looked good. I went to a follow up appointment and found out he did not take biopsies and I was very disappointed. He did not order stool sampled or tests and I just felt so frustrated with him and basically did not go back. As time progressed the problems worsened and more things started such as losing weight, fevers, nausea/vomiting, joint pain, etc. I was stubborn and did not go and seek help, partly because I thought the next GI would say the same thing to me "we found nothing wrong" and partly because I was stubborn and did not want to acknowledge I could have something wrong. In 2007 it became severe. In May 2007 I was having such a rough time: fever, was not able to eat, severe ab pain, constant diarrhea and I went almost 3 days without eating or drinking anything because I knew it would just come right out and feared the ab. pain. On day three I felt faintish and very weird and went to the ER, where they said I was dehydrated and put some fluids in me through an IV. I should have sought medical help at that time, but unfortunately I did not. Then in December is when I literally because frightened when I had another serious flare to the point I could not even keep water in me. I went days without eating, then tried to eat half a sandwich because I knew it was not healthy and spent the night in the bathroom having diarrhea and vomiting, had a fever, cold sweats and shaking, extreme exhaustion and my whole body just hurt.
There is only one time I can remember being on an antibiotic in the past 3 years and that was started late January 2008 (flare started early Jan.) because of the abscesses they found on my lower jaw (it was Amoxicillin). I was on that for 5 weeks-- which is a long time to be on an antibiotic, but Dentist wanted me on it, then oral surgeon wanted me on it for 2 more weeks after my oral surgery. On the antibiotic I did not really notice a difference in how I physically felt, but at the time frame I was put on them I was on a high dose of Pred and that had kicked in full gear to where I was having normal bowels, no ab, pain and feeling good (other than Pred. side effects, lol).
I have yet to pin point any certain foods that causes it, but when I am very ill I cannot eat anything greasy or "heavy" as I just feel like I am going to immediately vomit. I have tried taking dairy out of my diet for a certain length of time and that did nothing. I will eat a certain food one day and be just fine, but then eat it another time and will have problems.
Thanks for your support and I am feeling hopeful that we will be able to figure this out. I think the hardest part is just the waiting and having a question mark over your head. At least when I am able to pin point exactly what the problem is then I will be able to switch over to just maintaining, controlling or fixing the problem.
Thanks,
Kelly
I can agree with the severe lower ab. pain feeling as if someone stuck you with a knife and was twisting it around. When I would get severe pain I would basically be doubled over or lying in the fetal position and get cold sweats. Same here with pain being relieved with passing gas and bowel movement-- sometimes it did relieve the pain and other times it did not.
I am sorry to hear about the constipation, then diarrhea and then cycle starting again. I am sure that would be exhausting in itself.
My symptoms started two and half years ago (June 2005). At that time all I had was abdominal pain and diarrhea-- but the diarrhea was not at a high intensity. I did go and see one GI and he really did not seem concerned. I had one colonoscopy, in which in recovery he came back and said all looked good. I went to a follow up appointment and found out he did not take biopsies and I was very disappointed. He did not order stool sampled or tests and I just felt so frustrated with him and basically did not go back. As time progressed the problems worsened and more things started such as losing weight, fevers, nausea/vomiting, joint pain, etc. I was stubborn and did not go and seek help, partly because I thought the next GI would say the same thing to me "we found nothing wrong" and partly because I was stubborn and did not want to acknowledge I could have something wrong. In 2007 it became severe. In May 2007 I was having such a rough time: fever, was not able to eat, severe ab pain, constant diarrhea and I went almost 3 days without eating or drinking anything because I knew it would just come right out and feared the ab. pain. On day three I felt faintish and very weird and went to the ER, where they said I was dehydrated and put some fluids in me through an IV. I should have sought medical help at that time, but unfortunately I did not. Then in December is when I literally because frightened when I had another serious flare to the point I could not even keep water in me. I went days without eating, then tried to eat half a sandwich because I knew it was not healthy and spent the night in the bathroom having diarrhea and vomiting, had a fever, cold sweats and shaking, extreme exhaustion and my whole body just hurt.
There is only one time I can remember being on an antibiotic in the past 3 years and that was started late January 2008 (flare started early Jan.) because of the abscesses they found on my lower jaw (it was Amoxicillin). I was on that for 5 weeks-- which is a long time to be on an antibiotic, but Dentist wanted me on it, then oral surgeon wanted me on it for 2 more weeks after my oral surgery. On the antibiotic I did not really notice a difference in how I physically felt, but at the time frame I was put on them I was on a high dose of Pred and that had kicked in full gear to where I was having normal bowels, no ab, pain and feeling good (other than Pred. side effects, lol).
I have yet to pin point any certain foods that causes it, but when I am very ill I cannot eat anything greasy or "heavy" as I just feel like I am going to immediately vomit. I have tried taking dairy out of my diet for a certain length of time and that did nothing. I will eat a certain food one day and be just fine, but then eat it another time and will have problems.
Thanks for your support and I am feeling hopeful that we will be able to figure this out. I think the hardest part is just the waiting and having a question mark over your head. At least when I am able to pin point exactly what the problem is then I will be able to switch over to just maintaining, controlling or fixing the problem.
Thanks,
Kelly