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LindaB wrote:Since I have had testing done by another lab, do you think I should have EneroLab do testing? Should I wait to see how I do after I am on Entocort and watching what I eat more closely?
LindaB
If you're planning to eliminate at least gluten and dairy from your diet, then you might as well see how that goes, for a while. If that doesn't control all your symptoms, and you're not sure what else to eliminate, then you may want to do some more testing. It takes at least a month or two, (or more, in some cases), just to get the residual gluten antibodies out of our system, before the immune system will even be willing to address any other food-sensitivity issues.
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.
I'm committed to eliminating all gluten and dairy from my diet to start. Instead of dreading this, I'm getting the feeling that I am going to be in control. Thanks for your response.
I'm sure this topic has been discussed in the past. What do folks here do when they know they have to go to an appointment but are concerned they are going to have an accident like a sudden case of D? Sometimes when I know I need to be somewhere, away from the toilet, I'm stressed and it can cause an issue for me. While I'm working on diet and getting my first supply of Endocort, are there tricks of the trade so to speak that others here can recommend? Mornings are the worst for me. Upon waking, I need to go use the toilet because of urgency more than because of D. It takes me an hour or more including five or six visits before I feel like I'm finished. We have a cruise planned with several day long tours in the works. I can't always make my body wait for a scheduled potty stop. Any advice?
Good solutions. Do you take the Immodium right beforehand or the night before? I've been known to bring a change of clothes just in case. It gives me more of a sense of security for some reason and I can relax a little more. Luckily, I haven't found too many ladies bathroom lines when I've had the urgency that I need to go. Thanks and I'm so glad I can ask any questions here.
The ultimate security blanket may be adult diapers. They're not exactly high fashion, but they can save the day, when worse comes to worst, and their mere presence can obviously help to minimize worry. In fact, just knowing that you have a pair or two in your vehicle, overnight bag, or whatever, can be pretty comforting, sometimes. They're also extremely valuable for preventing major disasters while asleep, for those prone to nocturnal "accidents".
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.
Tex, That's a great idea. I've never had problems in my sleep. Just having them might give me a little piece of mind while I travel. I haven't carried a diaper bag in 20 years and never for myself. Something new but hopefully only temporary!
I haven't heard a whole lot about honey here. Is it okay for me to cook with?
Hi Linda. I was also very upset when I first found out ( actually, I'm still not very happy about it), but we kind of have no choice if we want to feel better and be able to live a "normal" life. It takes a lot of thinking at first, but once you find a number of things you CAN eat, then the things you can't eat become less meaningful. Seems like you should be staying away from gluten, dairy and egg for sure ( because of your previous tests). The other things like salad and fresh fruit are hard on an already inflamed gut, but once you are feeling better, you may be able to add them back in. I keep telling myself that because I loved my salads before all of this happened :)
I usually cook extra of whatever I make for dinner and eat that for lunch the next day.
If you can't eat eggs, you can have rice chex, corn chex, and gorilla munch ( like Kix) with almond milk.
I can eat canned peaches and pears and look forward to them! Apple sauce is good too.
If I want a little sugar, I eat a few jelly belllies :)
Just a few suggestions.
Oh and about the testing, if you do decide to test, do it BEFORE you are on Entocort. It can suppress the antibodies that need to be detected.
Keep us posted on your progress and have a great trip!
Honey is a paleo food, so it's generally safe, (in moderation), but many of us have to minimize virtually all types of sugar while we are recovering, because if it isn't completely digested, it tends to ferment in the colon, feeding undesirable bacteria and yeast, and possibly causing gas, bloating, and D.
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.
I almost think it will be easier eating on the cruise than at home. I have submitted my dietary restrictions already to the cruise line. My husband is underweight. A problem I don't share. I'm hoping with the removal of dairy, gluten and desserts, I can shed some weight. I know the Endocort is not going to help on that front. I remain fairly active. I found the B12 for under the tongue today at Costco. The ingredients on the bottle look okay.
I'm hoping with the testing I've already done, my diet changes and Endocort, I will start on the road to healing. I just don't seem to be able to get everything out the first or second time I head for the bathroom first thing in the morning. I'm in there sitting for 5 or 10 minutes waiting to finish. Sometimes I need to return to the toilet soon after washing my hands. Up and down, up and down for an hour or two. I usually don't have a BM for the rest of the day and evening. I hope I can figure all this out.
Thanks so much for the encouragement and suggestions. I'm open to trying anything.
Linda
just after Dx when i was having BM's at least 4 - 6 times a day these were my safety net-
- spare undies, pads, wipes, in my handbag
- spare set of work pants or skirt in the car (in case it was a really bad accident)
- if i had important meetings, or had to travel domestic flights, i would wear an outfit with a longer not as tight fitting top, wear a long thick incontenence pad and then wear 'double underwear' if there was some slight leakage,99% of the time the pad caught it.
- make time to go the toilet every couple of hours, when working i would schedule 'potty time' for 15 mins before long meetings, do relaxing breathing etc
- i used to carry questran (it slows motility doesnt stop it) and used 1/4 dose of the questran when i had to do long haul flights to europe for work (36 hours transit) things would be back to normal within about 12 - 24 hours after having the questran
Stress was one of my main triggers that would cause MC mud. I would schedule stressful work meeting later in the day so if there was a reaction it would happen when i was at home.
when things settle down and you get to know the signals of when BM's are going to occur, going out for the day is not that stressful.
if I am going somewhere different/new, i get on the internet and suss out where the toilets are before i go there or travel to that place or shopping centre.
2 years post Dx and my MC is in remission. I do 2-3 BM's per day
I get up about 2.5 hours before i have to leave for work and this routine means that i do the BM before i go to work. 90% of the time the 2nd one occurs when i get home after work.
i dont carry spare clothes in the car any more (but the spare pair of undies, wipes etc are still in the handbag!!)
eating wise it is much the same, once you confirm your safe staples, it doesnt take long to get the routine in place and going out for the day or the weekend is not really a stress.
I have a rice protein powder that i mix with coconut milk and it is fantastic for working lunches or travelling. People assume i am having a diet shake meal replacement thing and dont even question why i am not eating sandwiches.
it can be all a bit overwhelming at first, like you have landed on a new planet. Hang in there, all the reading and learning, the changes you make are worth it
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
They're also extremely valuable for preventing major disasters while asleep, for those prone to nocturnal "accidents".
