Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
I've been lurking for awhile, felt I really should register/post and thank you all for what you do here. My story is similar to lots of folks here...thought I got food poisoning at a professional hockey game 2/08. Bad diarrhea, got somewhat better, bad again, had a colonoscopy because it was time and my dad died of what started out as colon cancer. That showed nothing of course and I sort of was up/down for a year..things got slowly worse, tried everything my PCP suggested (blood tests/stool samples negative of course). I eventually just sort of starting living on daily immodium which wasn't the best thing..but it worked most of the time, although I have stories that I'm sure everyone here has that would HORRIFY normal people!!!
Things went slowly and completely CRAZY in July and by early August I really couldn't get out the house to go to work and TONS of immodium was making no difference. Went back to GI doc, flex sig/biopsies and here I am with a diagnosis of MC. I got on this site prior to the flex sig when the doc's said I sounded like "classic MC". Hubby has been gluten free for years so that was easy for me to start doing. Did the Pepto for 5 weeks before they started me on entocort a week ago (am I wierd that I sort of like Pepto tablets?? )...the doctor didn't think the Pepto was doing what it should since I was still having issues. Of course the blood tests again came back negative...with my follow up visit last week she asked how/what I was doing and I mentioned I was avoiding gluten-her comeback was "Why??". Of course I sort of expected that after being on this site...so I just dropped it.
Anyway, I'm planning on getting the Enterolab tests done soon so that I have a better idea what is really going on. Thank all of you for your stories, suggestions, insights as they really gave me hope when I couldn't get away from the toilet during that really bad period.
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Welcome to our internet family. It sounds as though you've sort of been a member of the family for a while, and you already understand the treatment of the disease better than your GI doc.
Isn't it interesting that someone who has this disease can figure out a treatment plan that works, but their doctor, with all their training, can't understand it, and tries to discourage the patient from using the only treatment plan that will truly eliminate the source of the inflammation that causes the disease. That's downright weird, when you think about it.
I'm glad that you've been finding this site to be helpful. Again, welcome aboard, and please feel free to ask anything.
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.
Well, just a quick med question here. I'm sure if I spent more time searching the archives I'd find some more info on this but...
I'm coming up on taking Entocort for 4 weeks..currently 9 mg/day. So, the doc said I could take Pepto in addition if needed...I've taken it and the occasional Immodium also when I need to. But really I've not taken much of that stuff because I want to see how things are going just with the Entocort and avoiding gluten/dairy (sent the Enterolab sample in today). How long does it take to really see consistent improvement anyway?? I'm still all over the place with what's going on. The doc said call back if it wasn't working (I'm not on the generic either..)....but how long do I need to give it to work and what is "not working" anyway??
Thanks for listening to my rant here..I know alot of you have been in my shoes so you have some insight here..
HockeyMom
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Well, responses to meds vary, but you should be seeing some significant improvement by now, though some cases do take longer. Bear in mind that not everyone gets complete symptom relief from meds alone, and it usually takes the diet several months or longer to work, because the intestines usually have to do some healing for that to happen. In most cases, if 6 weeks of treatment with Entocort doesn't bring some serious improvement, Entocort is probably not going to work.
"Not working" is subject to personal interpretation, but IMO, no changes at all, would be "not working". A that point in time, a reasonable degree of improvement would involve 1 to 3 BMs of any type per day, (other than explosive D), with a noticeable reduction in other symptoms. Remission, of course, would be a return to a totally normal bathroom pattern, with no other symptoms. Others may have different opinions, though. It often takes a year or longer, to reach total remission, (IOW, to get to the point where we feel as good as new, or better), because it takes a long time for the gut to heal, (depending on the extent of damage) - it takes much longer than most doctors realize, anyway. Everyone is different, though.
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.
Thanks Tex. Ya, I'm better, I'm back at work... that's saying something!!! I guess I'm just frustrated that I'm still having to stop emergently 3-4 mornings out of 5 on the way to work (I'm making that sound prettier than it is actually..) despite going a few times before even trying to get out of the house!!! Boy, if I won the lottery and didn't actually have to work for a living this MC thing would be alot more manageable
I think I am going to call and at least leave a message with the Dr tomorrow anyway. After reading more on this site maybe I'm just consuming too much as far as fruits/veggies go...which is WAY down from my baseline. I grew up in southern California though and it's pretty hardwired in me to suck down lots of that stuff!!! Boo hoo huh?
Again thanks for responding-
HockeyMom
"Do what you can, with what you have, where you are"-Teddy Roosevelt
If you're having to stop most days on the way to work, the Entocort is certainly not doing much at all for you. All of your improvement might just be due to the diet changes. Entocort should be doing better than that by now, IMO, with the diet changes helping it out.
Fiber really is bad news for most of us. We have to avoid virtually all fruits, (except maybe bananas), and all veggies should be peeled, overcooked, and the quantity of green veggies should be very limited, because recent research shows that cruciferous vegetables actually cause an increase in lymphocyte infiltration in the epithelia of the colon, (which is a marker of LC).
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.
cruciferous vegetables actually cause an increase in lymphocyte infiltration in the epithelia of the colon, (which is a marker of LC).
Seriously?? I practically live on cruciferous vegetables like broccoli, brussel sprouts, cauliflower, etc. Am I making myself worse, even though I don't seem to react to them? Yikes!
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.
Ok, I get the cruciferous veggie thing...not my deal except cabbage!! I guess my favorite Russian Borscht is out for the winter!! Peeled, cooked to death veggies I understand. Seems that everyone says potatoes of any sort are ok, but why do I keep seeing green beans as being exempt?? And what about hummus??? I could/have been living on that stuff...
HockeyMom
(trying to get it right..although I know that "right" is different for everyone!!).
"Do what you can, with what you have, where you are"-Teddy Roosevelt
I wouldn't completely write it off that quickly. By then, you'll have a better idea of what you can tolerate, and what causes problems. Peeled, cooked-to-death veggies often work for most of us, so long as we don't over do it. Overcooking also gets rid of much of the oxalic acid that some cruciferous veggies, (such as spinach), contain. The traditional recipe is probably more likely to be safe than the version used in some countries, that calls for tomatoes, because many of us have problems with tomatoes, until our gut heals.
People who are sensitive to soy are usually also sensitive to legumes, which is why green beans and hummus are off limits for some of us. However, only about half of us are sensitive to soy, and even some who are, can tolerate well-cooked green beans, for some reason or other.
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 there
welcome to the group, I know the feeling of having an accident on the way to work, it takes alot of energy to get over that and be ready to face the rest of the day.
in my case the accidents normally happened on the way home when i was tired and I would get stuck in traffic. Changing jobs and moving to a smaller city (now doing a 15 min commute instead of 45 - 1hr)
depending on how many threads you have been reading I have a motto regarding MC,
there is no right way or wrong way, there is your way....
the meds that work for one person may not work for another and same food wise, it will take a bit to figure what works for you, the effort, time, patience to do that is definately worth it (a life with minimal accidents)
take care
good luck on your MC Management journey
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Visit the Microscopic Colitis Foundation Website
)...the doctor didn't think the Pepto was doing what it should since I was still having issues. Of course the blood tests again came back negative...with my follow up visit last week she asked how/what I was doing and I mentioned I was avoiding gluten-her comeback was "Why??". Of course I sort of expected that after being on this site...so I just dropped it.
That's downright weird, when you think about it.
