Hi All! It was nice to find this place last night in the middle of the night during my multiple trips to the BR then soaks in the tub.
I was diagnosed by my PCP about 3 weeks ago. I am an RN in a nursing home where c. diff is an occasional problem. My symptoms started rather quickly and I thought it was just a virus. My employer made me see the work comp MD to rule out C. Diff. He also thought it was a virus but my D. at that time was in it's 11th day. The C. Diff was neg. I then saw my PCP the next day who started me on Asacol. It has really done nothing. In fact I see whole pills in my D!! And I know that isn't normal.
Can you help direct me in my next step? I was thinking about calling my PCP in th AM (it's Sunday now) and asing him to procede with the biopsy. I had declined them when I first saw him and wanted to try conservative treatment first.
Last night the D was intractable. Probably a bit dehydrated right now. Could really use some suport!!
NEWBIE HERE WHO NEEDS HELP
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Mimic,
Welcome to our internet family. I'm sorry you're having this problem, but hopefully you can find the solution you need, here. I'm a bit confused by the details of your diagnosis, but if you actually have MC, (which it certainly sounds as though you might), then Entocort EC would provide a much faster route to remission, (and it will do it without the Draconian side effects of Prednisone, since it is encapsulated budesonide, so that it does not become activated until it reaches the ilium, and the colon, which means that only about 10 to 15% of it is absorbed into the bloodstream. Asacol, (and the other 5-ASA meds) have been found to be beneficial by some members here, as a maintenance med, but they are not very effective for bringing remission, initially.
I assume that you're aware that C. diff is notorious for false negative culture results. Some of our members have required a retest or two, before a positive result turned up.
It is quite common for intact Asacol capsules to show up in the toilet, during MC reactions. If I recall correctly, the encapsulation on Asacol is pH-sensitive, and that can be easily disrupted during MC reactions. Also, bacterial imbalances can have an effect on the breakdown of the capsule, and so can the "rapid transit" so common with MC.
Dehydration is definitely a risk, so be sure to ingest plenty of liquids, preferably with electrolytes. Some members use Gatorade, and some use Pedialyte. There are also a couple of home mixes listed here on the site, (I believe in the "Getting Started" section).
MC can't be cured, but it can definitely be controlled, so that you can get your life back. Many of us control our symptoms by diet alone, but even with the diet route, Entocort will bring control of symptoms much faster than diet alone.
Please feel free to ask any questions that come to mind, (you won't "gross us out" - we've all had enough "accidents", to be appropriately humbled by the disease). Again, welcome aboard.
Tex (Wayne)
Welcome to our internet family. I'm sorry you're having this problem, but hopefully you can find the solution you need, here. I'm a bit confused by the details of your diagnosis, but if you actually have MC, (which it certainly sounds as though you might), then Entocort EC would provide a much faster route to remission, (and it will do it without the Draconian side effects of Prednisone, since it is encapsulated budesonide, so that it does not become activated until it reaches the ilium, and the colon, which means that only about 10 to 15% of it is absorbed into the bloodstream. Asacol, (and the other 5-ASA meds) have been found to be beneficial by some members here, as a maintenance med, but they are not very effective for bringing remission, initially.
I assume that you're aware that C. diff is notorious for false negative culture results. Some of our members have required a retest or two, before a positive result turned up.
It is quite common for intact Asacol capsules to show up in the toilet, during MC reactions. If I recall correctly, the encapsulation on Asacol is pH-sensitive, and that can be easily disrupted during MC reactions. Also, bacterial imbalances can have an effect on the breakdown of the capsule, and so can the "rapid transit" so common with MC.
Dehydration is definitely a risk, so be sure to ingest plenty of liquids, preferably with electrolytes. Some members use Gatorade, and some use Pedialyte. There are also a couple of home mixes listed here on the site, (I believe in the "Getting Started" section).
MC can't be cured, but it can definitely be controlled, so that you can get your life back. Many of us control our symptoms by diet alone, but even with the diet route, Entocort will bring control of symptoms much faster than diet alone.
Please feel free to ask any questions that come to mind, (you won't "gross us out" - we've all had enough "accidents", to be appropriately humbled by the disease). Again, welcome aboard.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
NEWBIE HERE WHO NEEDS HELP
Dear Mimic,
So sorry you spent your night in the bathroom and tub instead of sleeping. I have been in your shoes and they are not comfortable. Starting with Tex there are many very bright and well-read members of this support group. I am sure you will hear from them soon. My collagenous colitis was diagnosed three years ago from a biopsy taken during colonoscopy. Asacol did nothing for me. I responded very well (as many support group members do) to Entocort. Unfortunately for me, I was one of the rare people to be allergic to this drug. After the third dose, I broke out in an itchy rash and had to discontinue the drug. Currently, I am in remission mostly due to eliminating gluten from my diet. I have a few questions for you: 1) how did your PCP diagnose microscopic colitis; 2) did he/she offer any advice re food sensitivities you may have (gluten, lactose, soy, etc) as most of us with MC have multiple food sensitivities; 3) was Pepto-Bismol offered as a first line drug (it has been effective with many MC patients and is more cost effective than Asacol).
We MC suffers have found that most GI specialists have sketchy knowledge, at best, re MC. It was not reported as a disease entity until 1976. Since we rarely bleed, and/or progress to serious complications they consider MC just a "touch of diarrhea," even when we tell them we have 10-20 BM's/day. Most treatments they offer us are taken from protocols for the treatment of other types of colitis. MC is uncommon, there are few drug studies designed for treating MC. Most of the papers I've read have been retrospective studies.
That said, it's probably a good idea to get biopsies done if your symptoms persist. Hope you will feel better very soon. Shekoe
So sorry you spent your night in the bathroom and tub instead of sleeping. I have been in your shoes and they are not comfortable. Starting with Tex there are many very bright and well-read members of this support group. I am sure you will hear from them soon. My collagenous colitis was diagnosed three years ago from a biopsy taken during colonoscopy. Asacol did nothing for me. I responded very well (as many support group members do) to Entocort. Unfortunately for me, I was one of the rare people to be allergic to this drug. After the third dose, I broke out in an itchy rash and had to discontinue the drug. Currently, I am in remission mostly due to eliminating gluten from my diet. I have a few questions for you: 1) how did your PCP diagnose microscopic colitis; 2) did he/she offer any advice re food sensitivities you may have (gluten, lactose, soy, etc) as most of us with MC have multiple food sensitivities; 3) was Pepto-Bismol offered as a first line drug (it has been effective with many MC patients and is more cost effective than Asacol).
We MC suffers have found that most GI specialists have sketchy knowledge, at best, re MC. It was not reported as a disease entity until 1976. Since we rarely bleed, and/or progress to serious complications they consider MC just a "touch of diarrhea," even when we tell them we have 10-20 BM's/day. Most treatments they offer us are taken from protocols for the treatment of other types of colitis. MC is uncommon, there are few drug studies designed for treating MC. Most of the papers I've read have been retrospective studies.
That said, it's probably a good idea to get biopsies done if your symptoms persist. Hope you will feel better very soon. Shekoe
-
barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Mimic---know the feeling----I want to tell U that Asacol didnt work for me either---and it is NORMAL to find the capsule intact--as U put it--it is very common!!
I would find the same thing-----although usually cracked a bit open----sometimes WHOLE!!!
I thought it strange too----and it was on a New Years Day(long time back) when I found !!!!3!!!! capsules in the bowl--so I ran down to Walgreens (cus now I was having a panic attack) --cus I thought maybe I was over-dosed--spoke to pharmacist--he calmed me down and told me STOP taking them and call ya GI!!!
I did that and GI stopped me--Xplained that the capsules at times dont totally dissolve but whatever--slips out(my wording) is doing its job!!!!
So I then went on Colazal--which was my salvation and a trip back to living----
Oh--Mimic--just to let U know---when I was MCC'ing--I always checked the bowl---needless to say my hub thought I was nutz!!
and get all the testing that your doc. wants to do---time to get back to that *wellness* road!!!Lets hear how U progress after talking to GI--
Nice to meet and greet U--
Barbara--the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Hi "Mimic" and 
It's nice to meet another medical professional (I'm a pediatrician).
If you haven't already had it, I would recommend colonoscopy with multiple biopsies in different parts of the colon. It's the only way to diagnose MC.
Also, as Tex pointed out, one culture may not be enough to rule out C. diff. Have you had any bleeding? It's common with C.diff. and rare with MC.
Asacol did nothing for me, either. I have been able to go into remission with diet alone, but I think the best MC med. is Entocort. Of course, you'd want to have the biopsies before starting a steroid, I think (as noted above, 90% of the steroid stays in the colon and only 10% goes systemic, which makes it an ideal med to reduce gut inflammation).
Also, it is possible for enzyme systems to be damaged by a viral infection and take some weeks to recover (lactase especially). Wouldn't it be great if this is the case? Have you tired avoiding milk products?
Looking forward to further chats.
Take care and pay attention to the dehydration,
Polly
It's nice to meet another medical professional (I'm a pediatrician).
If you haven't already had it, I would recommend colonoscopy with multiple biopsies in different parts of the colon. It's the only way to diagnose MC.
Also, as Tex pointed out, one culture may not be enough to rule out C. diff. Have you had any bleeding? It's common with C.diff. and rare with MC.
Asacol did nothing for me, either. I have been able to go into remission with diet alone, but I think the best MC med. is Entocort. Of course, you'd want to have the biopsies before starting a steroid, I think (as noted above, 90% of the steroid stays in the colon and only 10% goes systemic, which makes it an ideal med to reduce gut inflammation).
Also, it is possible for enzyme systems to be damaged by a viral infection and take some weeks to recover (lactase especially). Wouldn't it be great if this is the case? Have you tired avoiding milk products?
Looking forward to further chats.
Take care and pay attention to the dehydration,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Good luck with the procedure. I hope you get the results you're looking for.
Thanks for the update. Please let us know how it goes.
Tex
Thanks for the update. Please let us know how it goes.
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.
Had the colonoscopy and multiple biopsies done yesterday. GI MD said findings are more consistent with ulcerative colitis as a small portion showed this. Told me to stop Asacol and start Canasa supp 500MG 2 X daily. He will call with results by next Wed. Kind of confused because I have never had either blood or mucus in my stool. Any thoughts?
Hmmmmm. Well, that's a heck of a note. Maybe the minimum symptoms indicate that it's just getting started, and by treating early, it won't develop much further. It's possible that you may have both conditions.
Please let is know what the biopsies show, and keep us updated on your progress. We have other members with both diseases.
Tex
Please let is know what the biopsies show, and keep us updated on your progress. We have other members with both diseases.
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.