As i have been documenting, my doctor started me on Entocort a month ago. I had been on Asacol for 3 months prior to that with some help but not 100%.
For the first two weeks on the Entocort i noticed a huge difference and actually felt good! However, the past two weeks have been on the decline. Last week i had a couple of 'off' days but they resolved and seemed fine. I and the doctor thought it might be due to stress/diet/bug and to continue. This week has been aweful. I feel like i did before i started my meds. I have missed 2 days of work this week already and am running on little sleep because i am up sick. I am having a lot of abdominal pain (mostly right side), diarrhea and some nausea. I am still losing weight (lost another 5 lbs since starting the Entocort, which i was surprised at due to the lack of diarrhea i had the first couple of weeks and eating better). I am home sick today too.
I feel discouraged right now and i really feel bad for my husband and daugther for having to put up with me. I hate feeling this way, it makes me so sad. I have a call into the doctor again, however i have an appointment with him on Monday for a Follow Up anyways so i think he will just tell me to stick it out until then.
I guess i am wondering how you all get through this? It is so dibilitating some times and it really gets me down. I know so many of you have gone through this much longer than i have and i am fairly new to this so i am sorry if i sound whiney, i don't mean to. Just having a tough day i guess.
Feeling Sick Again...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Feeling Sick Again...
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi Erin,
Sorry to "hear" that you're having such a bad week. That shouldn't be happening with Entocort. Either you're having an adverse reaction to it, or some other issue is causing the problem. I assume that your doctor has considered the possibility of appendicitis, (since the pain is on your right side). Diverticulitis comes to mind, (I've had that problem), but you're pretty young for that to be an issue. If your gall bladder were causing the problems, the pain should be up just under your rib cage, and it should even be noticeable in back, and it should be worse after a fatty meal.
It's possible that it just took a while for your body to build up an intolerance to Entocort. The symptoms you described, (pain, diarrhea, and nausea), are the most common results of an adverse reaction to it. but then, they're the most common symptoms of virtually any adverse GI event, regardless of the cause. The fact that you had two good weeks with Entocort, makes me question the likelihood that you are now having an adverse reaction to it, but that doesn't mean that it's not possible. Usually, if someone is going to react negatively to budesonide, they do so right off the bat, or at least within a few days.
On the other hand, the fact that you are losing weight on Entocort is a vote for an adverse reaction, because Entocort normally is much more likely to cause weight gain, rather than loss.
After taking it for only one month, you can probably stop taking it "cold turkey", without incurring any systemic problems, (IOW, without tapering the dosage for a week or two), but your doctor would need to be consulted before doing that.
Never apologize for anything that you consider to be "whining". That's what this board is for, and we've all done our share of it. We all have setbacks, from time to time, some more so than others, and it's a devastating feeling, after experiencing a taste of success, but we learn by trial and error, as we fine tune our treatment programs.
Hopefully, your doctor will call soon and offer some insight.
Hang in there,
Tex
Sorry to "hear" that you're having such a bad week. That shouldn't be happening with Entocort. Either you're having an adverse reaction to it, or some other issue is causing the problem. I assume that your doctor has considered the possibility of appendicitis, (since the pain is on your right side). Diverticulitis comes to mind, (I've had that problem), but you're pretty young for that to be an issue. If your gall bladder were causing the problems, the pain should be up just under your rib cage, and it should even be noticeable in back, and it should be worse after a fatty meal.
It's possible that it just took a while for your body to build up an intolerance to Entocort. The symptoms you described, (pain, diarrhea, and nausea), are the most common results of an adverse reaction to it. but then, they're the most common symptoms of virtually any adverse GI event, regardless of the cause. The fact that you had two good weeks with Entocort, makes me question the likelihood that you are now having an adverse reaction to it, but that doesn't mean that it's not possible. Usually, if someone is going to react negatively to budesonide, they do so right off the bat, or at least within a few days.
On the other hand, the fact that you are losing weight on Entocort is a vote for an adverse reaction, because Entocort normally is much more likely to cause weight gain, rather than loss.
After taking it for only one month, you can probably stop taking it "cold turkey", without incurring any systemic problems, (IOW, without tapering the dosage for a week or two), but your doctor would need to be consulted before doing that.
Never apologize for anything that you consider to be "whining". That's what this board is for, and we've all done our share of it. We all have setbacks, from time to time, some more so than others, and it's a devastating feeling, after experiencing a taste of success, but we learn by trial and error, as we fine tune our treatment programs.
Hopefully, your doctor will call soon and offer some insight.
Hang in there,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Erin,
I'm wondering did the symptoms digress all at once or was it some amount worse each day as time passed. Do any particular foods currently give you issues? Or amounts of foods? Did you have right sided pain at all before taking Entocort?
Hi Tex,
I seem to remember a while back that there were studies showing the number of lymphocytes within certain areas of the Colon, and it appeared that the first section of the colon had the most and it got lower the closer you got to the end (sigmoid). That being the case might that explain a right handed pain around the apendix area. Never thought much about this before until now.
Thanks,
Mike
I'm wondering did the symptoms digress all at once or was it some amount worse each day as time passed. Do any particular foods currently give you issues? Or amounts of foods? Did you have right sided pain at all before taking Entocort?
Hi Tex,
I seem to remember a while back that there were studies showing the number of lymphocytes within certain areas of the Colon, and it appeared that the first section of the colon had the most and it got lower the closer you got to the end (sigmoid). That being the case might that explain a right handed pain around the apendix area. Never thought much about this before until now.
Thanks,
Mike
Hi Mike,
The symptoms gradually worsened over the past two weeks, with last night being a doozy.
Right now i am staying away from Diary, Caffeine, Fried Foods, Raw Fruits & Veggies. I am awaiting my results from Enterolab so i am not sure if i need to be GF yet or not. All my testing came back negative for Celiac so i figured i would wait on eliminating Gluten when i got the enterolab results back.
I did have some right sided pain prior to the Entocort but most of my pain was below the navel.
I haven't been eating anything different lately (somewhat a creature of habit when it comes to that). Really the only difference is the stress level going on right now. Work is very demanding at the moment, which i'm wondering if that is taking its toll. I have also noticed if i don't eat somewhat on schedule my tummy doesnt like that either.
I did not hear back from my doctor today (although he still has another hour so i'm not giving up hope yet), but i am not sure what he will tell me other than he will see me at my appointment on monday or his famous sentence from last time 'its just bad IBS'.
It's very frustrating.
The symptoms gradually worsened over the past two weeks, with last night being a doozy.
Right now i am staying away from Diary, Caffeine, Fried Foods, Raw Fruits & Veggies. I am awaiting my results from Enterolab so i am not sure if i need to be GF yet or not. All my testing came back negative for Celiac so i figured i would wait on eliminating Gluten when i got the enterolab results back.
I did have some right sided pain prior to the Entocort but most of my pain was below the navel.
I haven't been eating anything different lately (somewhat a creature of habit when it comes to that). Really the only difference is the stress level going on right now. Work is very demanding at the moment, which i'm wondering if that is taking its toll. I have also noticed if i don't eat somewhat on schedule my tummy doesnt like that either.
I did not hear back from my doctor today (although he still has another hour so i'm not giving up hope yet), but i am not sure what he will tell me other than he will see me at my appointment on monday or his famous sentence from last time 'its just bad IBS'.
It's very frustrating.
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Dr. Called
He said to continue taking the Entocort as prescribed and he will see me as scheduled on Monday to discuss what is going on...sigh... 
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Mike,
I don't recall seeing any information on lymphocyte distribution in the colon other than the fact that it has been suggestted that biopsies taken during a sigmoidoscopy are generally considered to be as reliable as reliable for diagnosing MC, as biopsies taken from random areas scattered over the entire colon, during a colonoscopy exam. ( I certainly don't claim to have a good memory, though). Are you referring to lymphocyte distribution in a "normal" colon, or an inflamed one?
Erin,
I think the odds are pretty high that you are probably gluten sensitive, but hopefully you'll know for sure, pretty soon. As long as you're not having any neurological symptoms from the Entocort, it's not surprising that your doctor would advise you to "stay the course". Hopefully, you'll be feeling better before Monday. The days really drag along when you're reacting.
Tex
I don't recall seeing any information on lymphocyte distribution in the colon other than the fact that it has been suggestted that biopsies taken during a sigmoidoscopy are generally considered to be as reliable as reliable for diagnosing MC, as biopsies taken from random areas scattered over the entire colon, during a colonoscopy exam. ( I certainly don't claim to have a good memory, though). Are you referring to lymphocyte distribution in a "normal" colon, or an inflamed one?
Erin,
I think the odds are pretty high that you are probably gluten sensitive, but hopefully you'll know for sure, pretty soon. As long as you're not having any neurological symptoms from the Entocort, it's not surprising that your doctor would advise you to "stay the course". Hopefully, you'll be feeling better before Monday. The days really drag along when you're reacting.
Tex
Here it is, I knew I remember reading it as I talked about it before:tex wrote:Mike,
I don't recall seeing any information on lymphocyte distribution in the colon other than the fact that it has been suggestted that biopsies taken during a sigmoidoscopy are generally considered to be as reliable as reliable for diagnosing MC, as biopsies taken from random areas scattered over the entire colon, during a colonoscopy exam. ( I certainly don't claim to have a good memory, though). Are you referring to lymphocyte distribution in a "normal" colon, or an inflamed one?
http://www.perskyfarms.com/phpBB2/viewt ... ding#30608
Ok, now even more than ever I'm thinking SIBO is involved somehow. Given that SIBO is more likely in the illeum (sp) section of the small intestine. So we've got a large amount of endotoxins being released by bacteria with a large source of food, just before the ascending colon. The ascending colon is where the largest numbers of lymphocytes are found in folks with MC. I've really gotta go back and pull all of this together, I see a lot of pieces that are all fiting together and making a lot of sense.
Here's another crazy thing that I just ran across again in my research. I was rereading a study showing that MC is a TH1 type response, and what do I read, that they show low levels of ZO-1. And what else shows low levels of ZO-1? Celiac disease, this is what causes the tight junctions to open. Given that a lot of folks here implicate gluten as a source of problems and we come full circle.
Mike
Mike,
This is a case of "selective learning". We both read the same article, but came up with completely different ideas of what we felt was most significant about it. In my case, I concluded that the fact that lymphocytic distribution may follow a reasonably consistent pattern throughout the length of the colon, was only a curiosity, or an item of passing interest that is probably significant only if one is trying to maximize the chances of obtaining an accurate diagnosis, by selectively picking optimum sites for biopsy samples.
The primary item of news from the article that stuck in my memory, (and still does), is the fact that such a high percentage of the general population is carrying around the markers of LC, while remaining asymptomatic. Somewhere in the mechanics of that spectrum, lies the answer to why some of us have chronic symptoms, while others remain asymptomatic.
The article also includes other tidbits of interest, but again, I consider these to be vastly subordinate to the statistics concerning all those asymptomatic cases of LC in the general population:
For example, one recent study discovered that 40% of patients with Hashimoto's disease, (autoimmune thyroiditis), had LC, though only one fourth of them were symptomatic, (IOW, only one fourth of them had D).
Another study showed that 43% of the asymptomic patients were daily users of NSAIDs, (which is roughly the same rate as symptomatic patients who use NSAIDs).
These are interesting statistics, but really just satellite examples of what I consider to be the most interesting observation in the article, (again, IMO), namely, that a very significant percentage of the general population have, (or have had in the past), LC, but are completely asymptomatic, and apparently always have been. That's an observation salient enough to hang your hat on.
Anyway, that's why I didn't recognize what you were referring to, because when I originally read the article, I didn't consider the lymphocytic distribution pattern to be significant enough that needed to be filed away in my memory, (so I didn't bother to remember it). Reaching different conclusions from the same data source, is what allows us to branch out and learn new things that we otherwise would never even notice. It's good that we see things like this from an individual perspective - that helps us to keep from overlooking something that might indeed turn out to be significant. Thanks for pointing that out.
Tex
This is a case of "selective learning". We both read the same article, but came up with completely different ideas of what we felt was most significant about it. In my case, I concluded that the fact that lymphocytic distribution may follow a reasonably consistent pattern throughout the length of the colon, was only a curiosity, or an item of passing interest that is probably significant only if one is trying to maximize the chances of obtaining an accurate diagnosis, by selectively picking optimum sites for biopsy samples.
The primary item of news from the article that stuck in my memory, (and still does), is the fact that such a high percentage of the general population is carrying around the markers of LC, while remaining asymptomatic. Somewhere in the mechanics of that spectrum, lies the answer to why some of us have chronic symptoms, while others remain asymptomatic.
The article also includes other tidbits of interest, but again, I consider these to be vastly subordinate to the statistics concerning all those asymptomatic cases of LC in the general population:
For example, one recent study discovered that 40% of patients with Hashimoto's disease, (autoimmune thyroiditis), had LC, though only one fourth of them were symptomatic, (IOW, only one fourth of them had D).
Another study showed that 43% of the asymptomic patients were daily users of NSAIDs, (which is roughly the same rate as symptomatic patients who use NSAIDs).
These are interesting statistics, but really just satellite examples of what I consider to be the most interesting observation in the article, (again, IMO), namely, that a very significant percentage of the general population have, (or have had in the past), LC, but are completely asymptomatic, and apparently always have been. That's an observation salient enough to hang your hat on.
Anyway, that's why I didn't recognize what you were referring to, because when I originally read the article, I didn't consider the lymphocytic distribution pattern to be significant enough that needed to be filed away in my memory, (so I didn't bother to remember it). Reaching different conclusions from the same data source, is what allows us to branch out and learn new things that we otherwise would never even notice. It's good that we see things like this from an individual perspective - that helps us to keep from overlooking something that might indeed turn out to be significant. Thanks for pointing that out.
Tex