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Been in your shoes more times than I can count. It is humiliating and frustrating. Just this week my husband asked me if I pooped my pants. I felt like I was two years old. He is such a sweetheart and tries to make me feel better by joking and being lighthearted but it is embarrassing. I immediately lied and said no, which is stupid, and then followed it up with "the look" confirming my accident. My reason for the accident was I simply waited in bed too long before I got up. It was warm and cozy and I felt lazy but should know better because each morning I wake because I have to go to the bathroom. I don't think any amount of padding would help me because it's just too watery. I have one toilet in the house and I always seem to have to go when someone else is in the bathroom- all I can do is just shake my head because there is simply no control over it.
I've had night issues before and luckily it's been a while. That is truly mortifying. This might be a bit too personal but whatever, I guess.......I used to wear thongs and have changed over to boy shorts just because it gives me added piece of mind in bed. These are the tidbits of information that doctors don't realize change a person's outlook on life. Now realistically, the style of underpants a person wears shouldn't be life altering but when you add all of the little things in life that add to how a person views herself/himself- MC is not a minor thing. I was told that I was lucky it is just CC because basically I can take a pill, eat whatever I want, and it is totally manageable. Granted, I would not want Krohns or other diseases either but a dx of CC should not be brushed off so lightly. The social and emotional issues alone are huge.
Reading this over I have to laugh- it just sounds so pathetic. All I can do is shake my head and think, "only me." The comforting thing about the whole situation is that it isn't just me, there are lots of you that understand. I hope this helps or at least makes you chuckle.
Deb--
The people that told you you're lucky because you can take a pill and eat anything are WRONG. Period. We have very limited diets, even more so than celiacs. That kind of comment always makes me mad.
Pat C.
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
I have been a diagnosed celiac since November 2009 and that is easy compared to colitis. I could eat wonderfully gluten free. Now even if I don't eat I am going the the washroom. This is a devestating disease and interferes with everything! : ( I am so tired of people saying oh but you look so good. I'm sorry you thought I was ugly fat. I enjoyed being healthy.
Collagenous colitis and lymphocytic colitis March/ 2013
Celiac Disease November/2009
SmallTownLady- I wish a pill was all it took. I can go without eating and still have D too. It's almost comical but not quite. The first time I took prednisone and it worked like a charm with no noticeable side effects. That was about six years ago. The second time around it was horrible. I'd like the magical pill without strings attached.
Same thing! And it was far from the first time. One time I had such a bad accident that when I got to the parking garage at my complex I hid behind a car till a guy who was going in the elevator was gone, and then went home to clean up, leaving the smell behind me.
I always wear big pads, and always have a bag with wipes, more knickers, and pads in it. I have had this happen more times than I can tell you.
Today I was going to go to the pool, but the gurgles are so loud, and I have been to the potty 4 times today already. All I need is to have an accident IN the pool.
Camie, I am sorry that happened to you. This is a condition that definitely puts a dent in our dignity. I applaud you for not letting MC keep you at home. I'm sure you didn't feel well when you went but you did it anyway and I hope you got some awesome pictures of your son. It will get better. There have been a couple of times that I've not been able to keep an appointment or a promise to do something. But there have been many many more where I decided I was going to do something or go somewhere in spite of feeling queasy, weak, tired, gurgling, etc and I was glad I did. So good for you for facing MC down in the first place and going to get pictures and join in the fun.
With every experience I've learned more about how to handle the next situation, to tweak my plan. Should I add another Imodium? Does deep breathing help? Should I do a liquid diet the night before, or go to bed earlier? What's my back up plan if I go somewhere and start feeling sick? What really has aggravated me is that even happy events are stressors and my gut reacts the same as it does to negative stressors. So having realized that I've learned more with every struggle. You will too.
And in the meantime we are here for you.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Debe13, I read you, I stopped eating and drank only water in February and march and I still went up to twenty times D. I am now on entorcort and 10 mg Elevil. I eat very little and no spices or sauces and only water. I still go mostly in the morning to mid afternoon. The GI acts like this is not a long term illness and bacicaly thinks it will go away. He stated that its normal for people to poop that much. I wonder if he has ever had to run for the bathroom, when it hits us it hits us. No warning just time to run and pray we make it. I have a eight year old at home and she is such a bubbly person and would like to spend her summer at the pool, I don't know what I am going to do.i live in a very small town and my kids are worried I will have an accident in front of people, this is my worry too, as I we would never live it down here. Ugh I pray we all go into remission.accidents are so humiliating.
Collagenous colitis and lymphocytic colitis March/ 2013
Celiac Disease November/2009
SmallTownLady--- I'm fairly sure that doctors who say that have never experienced having that loss of GI/bowel control. And it's normal for people to "poop that much"--- which is D 10+ times a day? That's beyond ridiculous. Incomprehensible.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
It is to bad they don't spend time on figuring out how to solve the problem. They know how to diagnose and then they just send you off suffering.can you imagine if they had to spend a week in our under pants. Living the lives we live. Trying to work, raise children and cook two different meals. Never mind all the extras. I am thankful I do not have chrones or uc. However I do not see a lot of differance in our symptoms. They seem to eat better due to the medication they are on. I know they suffer terribly however ours seems to be quite equivalent to what they go threw . I would like the bag! I am so tired of starving!!how are you doing Carol? Did you up the elevil? Do you take an Imodium every time you leave the house? I am allowed Lomitil but a side effect is may cause depression. Ugh I can not risk it. I suffer bad anxiety though. Frustrating! I always do better mentally after I eat. Just wish I could eat during the day.thank you for listening to me rant on I really want to be better not bitter!
Collagenous colitis and lymphocytic colitis March/ 2013
Celiac Disease November/2009
I am doing well. I am allowed to increase my Elavil/amitriptyline by 5 mg "in times of stress". My father in law passed away a couple of weeks ago so the night before we traveled I took the extra 5mg and the night before the funeral I took extra 5 and it worked well. Last weekend we sprinkled his ashes and I wanted to make sure I'd be okay to go so the night before I took the extra 5mg. I generally don't have to take Imodium unless I have a day that I'm having aggressive cramping and numerous BMs in a short time span, then I'll take Imodium to slow things down. Fortunately it's not needed every time I leave home and in fact is becoming very infrequent at this point. I tend to be C prominent so my version of D is when I might have 8 BMs within 90 minutes and they become pencil thin. It makes me nauseated, anxious and tired and will wreck my entire day. But since the addition of the extra Elavil and keeping my diet simple during times of stress, plus making sure I get as much sleep as I can, doing deep breathing exercises (per Dr. Weil) and making sure I'm not making myself overly anxious with my self-talk, I've been able to do reasonably well. Talk about fine tuning, but that's what it takes. I've had to chip away at the remaining symptoms and I think it's paying off. The extra Elavil is the first time that I feel like I've been able to add some predictability back into my life. I'm sure it's kept me from having some rough days. Instead of having 8 BMs in within 2 hours, I'd have 3-4 BMs spread throughout the day. That's much easier to take. I know that 3-4 in a day is not typical for me but when they are spread 2 hours apart, it's not a disruption to my day nor do I get nauseated or as fatigued. I'll take that.
I hope this answers your questions.
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hello to all. I am hoping to post to my previous thread and if not, can someone give me info on how to post on my own thread. I am moved by all the responses........almost near tears. Thank you for all your advice and support. I read and reread every post for advice and comfort.
MC ruled this week. After last weeks accident I am terrified to leave my house. The accident was not triggered by unsafe foods. It was an MC accident. Any errands or activities I do are an empty stomach of clear liquids. Not much energy on that kind of diet. I don't eat real food until all errand etc are said and done an I don't have to leave the house.
High stress months ahead. My son graduates from high school this week. My husband is in Germany. I am on my own to produce a party for next Sunday. I have to travel for an out of state wedding eight hour drive.
One day at a time Camie. Try not to look ahead too far. it may just cause you more stress.
I wish there was something i can say or a suggestion for your trip that would make it all better.. I hope that it all goes smoothly for you.
leah
Camie, I think it's time to ask for help from others (i KNOW this is a hard thing to do and if I've learned nothing else I've learned that sometimes I just have to. What I also found is that others are happy to help me out. They just want me to be okay.) Who can help you with your son's party? Who can run and pick up supplies, groceries, the cake, etc so that you can stay at home, do the prep there and pace yourself. Your friends will be happy to help-- especially if they've been through the graduation party thing. I've done it-it's an event!. As far as the wedding with the 8 hour drive, can someone go with you and help drive so you can rest more? Or is it something that you need to excuse yourself from? I know that would make you sad but physically is this something you'll be able to do? Most of us know all too well how it is to feel weak and washed out from too little food and not absorbing nutrients of what we can eat. When I was sicker it took very little to wipe me out. If it hadn't been for my husband driving me out of town I simply would not have been able to go. Going somewhere only to feel weak, dizzy, and wiped out when I was there was so miserable sometimes it wasn't worth going. It just takes time to build that strength up and to figure out how to tackle the symptoms that are likely to show up. Traveling now is easier for me than it was even a year ago. Things do get better, but it is not a fast process at all.
These are all the ideas I have off the top of my head. Like others have said, one day at a time, and break down the big things into smaller pieces. It will all get done and everyone will have a good time, even if it's not all perfect.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Trust me, you are not alone. While traveling home from Charleston, SC last week my husband had to pull off on a dirt road in SC so that I could poop behind the car. He stood sentry during the incident as he did on another occasion on a major highway in GA. Before I was diagnosed, I ruined carpet in the bedroom and had to have it replaced and many times soiled the sheets. We always carry toilet I have also added Kaopectate to my regimen. He says that in the case of MC this is all that is usually necessary. He also says that having the poops daily is not normal with this condition if I am taking this drug. A previous doctor put me on 2 Entocort/day and the only difference I could tell was that my hair was falling out and my blood sugar was through the roof. I have also been Type 1 diabetic for 40 years and steroids and diabetes don't mix well. Does this ever get better? I don't sleep well because of the fear that I will have an accident in the night and not be able to get to the bathroom. My gut is constantly active and you can hear it across the room. I have leg cramps in the night and strange nightmares. There is also a constant gurgling in my throat. Does anyone out there have any of these issues? My doctor now thinks he should perform an endoscopy to rule out e-pylori. I'm not going to do that. That bacteria does not cause the diaahreah and that is the root of my problem. HELP!!!
Diagnosed with MC in 2010. Type 1 Diabetic for many years.
