I want my life back...............

[JFR]

Making a mess while out of the house - or in it - was more humiliating to me than wearing the things. My take on it is that were invented to help a medical problem and avoid a mess. They did. But as you say, everyone's different. It was so nice not to have D running down my legs onto the floor.

I was talking about a while ago. When thing were at their worst, to avoid humiliation I stayed inside as much as possible and if I had to go out I would not eat for at least 12 hours before and take Immodium. For me a big part of coming to terms with this disease is learning to manage both my anxiety over it and my embarrassment. It's a process. My hang up about adult diapers is not rational and I view it as counterproductive. I'm working on it. Luckily I haven't needed them lately and if I do I will use them.

Jean

[owhathehell]

Hi, two weeks ago I was diagnosed with CC and Ischemic colitis via a colonoscopy and biopsy. I was rushed to the hospital because I was hemoraging. I was transfused and was sent home with the dignosis. I have since seen my GI and was told to take Pepto Bismol and eliminate caffene, lactose, and do low fiber. I doesn't make any difference what I eat, I end up at the potty. I was previously tested for celiac and that was negative. I always called what I had IB and I have had it for at least 30 years. I know many of the triggers and try to avoid those foods but now I don't know what to eat. It stand to reason to keep a food diary and eat what works. How do I make sure I get the nutrients I need. That's enough for now, I will await your responses.

[Karen1129]

Making a mess while out of the house - or at home - was more humiliating to me than wearing the things. My take on it is that were they invented to help a medical problem and avoid a mess. They did. But as you say, everyone's different. To me, it was a Godsend to not have D running down my legs onto the floor.

Not only did the watery D run down my leg, but the smell....... well........ to me , that was
worse.

If you can always be very close to a bathroom to change, that works fine, but out shopping....
for me... no.

I just make sure I don't eat for hours before I plan a trip to the store.

[Karen1129]

Hi, two weeks ago I was diagnosed with CC and Ischemic colitis via a colonoscopy and biopsy. I was rushed to the hospital because I was hemoraging. I was transfused and was sent home with the dignosis. I have since seen my GI and was told to take Pepto Bismol and eliminate caffene, lactose, and do low fiber. I doesn't make any difference what I eat, I end up at the potty. I was previously tested for celiac and that was negative. I always called what I had IB and I have had it for at least 30 years. I know many of the triggers and try to avoid those foods but now I don't know what to eat. It stand to reason to keep a food diary and eat what works. How do I make sure I get the nutrients I need. That's enough for now, I will await your responses.

yeah, that's a hard one. gf/df/sf hasn't kicked in for me yet and i keep losing weight. so, i'm
searching for answers still myself.

sounds like you have really had a rough time. Thank God I haven't had to go to the hospital.

[owhathehell]

Karen thanx for the reply, I too have lost weight, with no appetite that is no surprise. You know if you read all the info given in the forum it'll drive ya crazy. I am afraid to travel in the event I am in trouble again. The GI's told me it may never happen again or it could happen tomorrow. I don't want surgery to remove that part of my intestine, gotta be horrible. Well for now as I said, I'll keep a food diary.

[mzh]

Making a mess while out of the house - or at home - was more humiliating to me than wearing the things. My take on it is that were they invented to help a medical problem and avoid a mess. They did. But as you say, everyone's different. To me, it was a Godsend to not have D running down my legs onto the floor.

Not only did the watery D run down my leg, but the smell....... well........ to me , that was
worse.

If you can always be very close to a bathroom to change, that works fine, but out shopping....
for me... no.

I just make sure I don't eat for hours before I plan a trip to the store.

I wore them when shopping but I made many very fast dashes to the RR. I must have been fortunate to not have the down the leg messes. How awful it must have been for you.

So, what is the solution for massive amounts of D when you need to leave the house? Is it not eating for many hours before going out, taking OTC anti-diarrheals or both?

Entocort has made my life normal although I know it's not a cure. I'm doing the L-glutamine thing and trying to be careful with what I eat until I try yet again to get off the Entocort.

[Karen1129]

Karen thanx for the reply, I too have lost weight, with no appetite that is no surprise. You know if you read all the info given in the forum it'll drive ya crazy. I am afraid to travel in the event I am in trouble again. The GI's told me it may never happen again or it could happen tomorrow. I don't want surgery to remove that part of my intestine, gotta be horrible. Well for now as I said, I'll keep a food diary.

Yeah, when you feel bad, you really don't have an appetite. family keeps telling me.... EAT !
I have never been one that could force food down myself even before CC !

I really only eat twice a day. mostly rice with something else. Sometimes I wonder if the boredom from rice and potatoes is what keeps me from having an appetite. lol

I too am afraid to travel. i always travled a lot, but ain't no way i'm getting on an airplane unless
I KNOW I'm not going to be in a flare up. lol

I'm seeing another GI next week to discuss other treatments plans. I haven't given up yet, but
there are days I mourn the life I had.

I don't think i would consider surgery unless it was the last resort. But, there are days when I weigh
myself and see I've lost more weight, and wonder where it will end, that thought does enter my mind.
But,, I will explore all other avenues first.

You might consider getting another opinion on treatment .

I've had some good weeks. right now I've been in a week long flare up and I don't know why.

Keeping a food diary is a good idea, as I, for the life of me can't think of what the heck i ate to
bring on this flare up.

[mzh]

Keeping a food diary is a good idea, as I, for the life of me can't think of what the heck i ate to
bring on this flare up.

There's been some info on the Internet that even a bad virus may cause MC or similar problems. Mine hit in 2002, four months after I had a dreadful case of the flu for a month; I really thought I was going to die. I wonder if we're all picking up viruses from time to time that may cause flares even years after getting sensitized to the disease. This theory seems to more or less poo-poo the idea that it's caused entirely by food allergies. In the end, whoever figures out what causes and cures MC and its variations should get a Nobel prize or something similar!

[Deb]

mzh, I was diagnosed in fall of 2010, went into remission within a couple of months after giving up gluten, had very brief issues until 2012, had a full-blown flare in spring of 2012 for about a month after a bout of intestinal (flu?) stuff. Seem to be okay now. It's weird stuff! Deb

[mzh]

You're not kidding! There really doesn't seem to be rhyme or reason. Every time I think I'm getting better for good, I have a flare out of the blue - like tonight. Thankfully, it's only for an hour, if that, but maybe it's because I'm on Entocort (1 pill a day). I dunno. You're doing great if you're not on Ento!