Controlling Bodily Functions

[LilyCeliac]

Ok, does anyone else have the EMBARRASSING problem of sometimes not being able to control bodily functions?

I was recently diagnosed and I've been going gluten free. I have noticed a bit of an improvement in my symptoms but they are still off and on.

There has been a few occasions where I have no warning about going to the bathroom and have had accidents.

Am I the only one with this control problem?

I have never felt so incredibly embarrassed in all my life.

[melmak5]

Lilly - that really stinks. I often have very little warning, but luckly have always had a bathroom near by. My GI prescribed taking half an immodium tablet every morning, but I swing between explosive D and painful C so quickly I don't mess around. Staying hydrated seems to help me somewhat. Perhaps others can offer more suggestions.

[~alex~]

Lilly, you are not alone in having accidents and I am sure there are many others. When you are as sick as gluten makes you, all you can do is your best and unless you spend 24/7 in the bathroom sometimes there will be accidents. I cried for hours the first time I had an accident in bed when I woke up sick in the middle of the night. I felt so embarrassed and degraded despite my fiance's loving and respectful reaction. I didn't think I would ever share this with anyone but I know how much of a comfort it would have been to me to hear that I was not the only one who had lost control of their bowels. I never imagined myself having such an accident as a twentysomething and it was really hard on my self-concept.

I found that when my stomach was really upset, lying propped up with pillows in an almost sitting position and staying as still as possible helped reduce rushed trips to the bathroom. If I layed flat or rolled over I think it disturbed my intestine and agitated things and usually necessitated a quick trip to the bathroom.

Try not to let this experience get your spirts down. I know it is not easy. It doesn't make you any less of a person--you are sick and you're doing your best. Imodium and possibly even Depends are things to look into if you need to be out and about. I know they are not fun things to think about but it might give you the confidence you need to get out and do the things you need to do.

Good luck

[confusedks]

Hello,

First, welcome to the board! I used to have accidents all the time as a little kid (but, not at an age that was normal) and I bet you that is why...un-dx'd Celiac! I get this sometimes when I eat coconut or a lot of oil in gluten-free baked goods, etc. Coconut milk is a BIG no no for me. So it may be something other than gluten also. Are you dairy or soy free? That may help! I hope it gets better!

Kassandra

[Canadian Karen]

Ok, does anyone else have the EMBARRASSING problem of sometimes not being able to control bodily functions?

I was recently diagnosed and I've been going gluten free. I have noticed a bit of an improvement in my symptoms but they are still off and on.

There has been a few occasions where I have no warning about going to the bathroom and have had accidents.

Am I the only one with this control problem?

I have never felt so incredibly embarrassed in all my life.

This is my life 24/7......

Between the refractory celiac and the collagenous colitis, I have absolutely no control, and to make matters worse, it is nothing but water, constantly, 20 - 30 times a day, for over a decade now..... also, it is very nocturnal, it is most active in the middle of the night. I get to sleep finally just when it's time for the kids to get up, so up I get again!

It sure is hard sometimes accepting the fact that I am 44 years old and basically need Depends most of the time. If I have to go out somewhere, I usually fast for 24 hours prior just so my tummy is TOTALLY empty and quiet to reduce the liklihood of embarrassing accidents. Of course, not eating for 24 hours periodically is not the best for the system either!

Just wanted to let you know you were not alone.....

Hugs.

Karen

[mftnchn]

While I haven't had this issue, I just wanted to say kudos for bringing it up on this board so that others are helped and you get the support you need.

You didn't say how long since you were diagnosed, so just an encouragement to make sure you are totally gluten-free, including personal products, it takes a while to do this well. Also, if the problem is gluten, relief could be around the corner.

[cmom]

I have experienced this many times. I am sooooo much better after going totally gluten-free. HOWEVER, I feel that after so many years of uncontrollable diarrhea, my body is somewhat conditioned to this, if that makes any sense. I do not have refractory sprue but still sometimes have issues. My sons are only 15 months apart, and when they were preschool age, I often could not leave the house due to the bathroom issues. If I would bend down and pick them up, I would go to the bathroom. Also if I coughed very hard. I have also had bad experiences in places like Walmart (just did make it into the bathroom stall, but that's it). I felt very sorry for the custodian that went in after I left. I know there has been discussion on this board concerning jury duty. I have a dr. statement on file at the courthouse that I cannot do it. I am not using it as an excuse not to serve. Because of years of humiliation and embarrassment, I feel I cannot be without access to a bathroom for a lengthy time. I may not need it, but I have to be able to go if necessary. I also feel I cannot hold certain jobs, such as on an assembly line or even a Walmart cashier b/c I have witnessed them asking their supervisor for a break, only to be turned down. I work as a special ed teaching assistant and have been able to do it successfully. However, this year a new duty was added of riding the afternoon special bus route with 7 kids. The route takes 1 1/2 hours. It travels deep into Amish country where there are no public restrooms and many of the residents do not have indoor plumbing. I did it for 5 days and felt fine. However, on the sixth day I had to go the bathroom several times before boarding and I was afraid to get on the bus. THis happened a couple of other days. I finally went to my principal and told her about my condition. She had no knowledge of it until then. She is very understanding and is getting me off the bus this week. She has assigned the duty to a new hiree. Sorry this is so long, I just want you to know that I totally understand and sympathize.

[LilyCeliac]

Wow, thanks so much everyone. Hearing this all really helps. I just had the most humiliating day of my entire life and hearing that I'm not alone has made things quite a bit better. I actually was glutened two days ago and so thats why my symptoms we're so bad today and uncontrolable. This is the first time I have been glutened since starting the gluten free diet so I guess I just didn't know what to expect.

This is an embarrassing topic but I'm now really glad I brought it up.

[ravenwoodglass]

You are not alone, as you have seen. I also suffer from this issue both with bowel and bladder. In my case it is from the damage celiac did to my nervous system. I simply don't get the signals that I have to go until a few seconds before I need to be in the bathroom. Unless I am glutened or for some other reason I am having cramps I basically have no warning. I have noticed though as time goes by and I heal further that much of my nerve damage is slowly healing. For example I now have leg reflexes which had been absent for over 30 years. At least now I can move fast enough to get there most of the time.

One thing that helped me a lot after I got over the embarrassment was a PT who used a machine and excercises to help with my control.

Although the electrodes from the machine and some of the excercise 'equipment' went in very personal places the PT was very considerate of my modesty and apprehension. She was also the one who insisted I see an allergist and pushed me until I was finally diagnosed.

If you are newly diagnosed you may find you regain control on your own soon. Keep to a strict diet, cut out all stimulants like coffee, tea, caffine and anything else you system finds hard to handle. Go with whole naturally gluten free food for as long as you can to cut down on CC issues and to give your gut and nerves time to heal. After you have been gluten-free for a few months strictly if this is still an issue you may benefit greatly from seeing a PT who specializes in continence issues.

[jerseyangel]

Hi Lily, and welcome to the board

Yes, many of us can relate to this. There were several occasions where I would *just* make it to the bathroom in time--and a couple where I didn't . Luckily, I'm home so I'm usually not far from a bathroom.

While I was still working (in a school), it was getting more difficult to deal with because the staff bathrooms were always a full hall away from where I normally was. I had so many close calls...

I ended up quitting my job when the combination of this and the passing out became too much.

After I began the diet, it seemed to get worse for a while--if I got cross contaminated or mistakenly ate the wrong thing, I would get the urgent D with no notice. I was afraid to go anywhere for quite a while--always not eating before and taking Immodium for some insurance.

It's been over 2 years now, and I still have anxiety about this--I keep Immodium in my wallet, eat carefully before leaving the house, etc. It did get better for me--I still have issues with D, but now at least there is some warning. It's something, though, that is never far from my mind.

[HouseKat]

Ok, does anyone else have the EMBARRASSING problem of sometimes not being able to control bodily functions?

I was recently diagnosed and I've been going gluten free. I have noticed a bit of an improvement in my symptoms but they are still off and on.

There has been a few occasions where I have no warning about going to the bathroom and have had accidents.

Am I the only one with this control problem?

I have never felt so incredibly embarrassed in all my life.

Yes.

Once I was on my way from my office to a classroom to make a presentation in another part of the school, and it happened while I was walking down the hall. I had to find a bathroom, clean myself up, throw away my underwear, and then go explain to the teacher that I was feeling ill and wouldn't be able to talk to her class that day. I went back to my office, gathered my things and went home.

Another time, I was out at lunch with my husband, and as I sat down in the car to leave the restaurant, I had an accident. I had to call the office to tell them that I wouldn't be able to come back to work right away.

Since the second incident, which happened earlier this year, I've been wearing Stayfree Ultra Thin Overnight with Wings maxipads backwards everyday in case of it happening again. Yesterday was the first time in months that I hadn't worn a pad.

I've been very lucky, my boss is sooo understanding. She is familiar with celiac and its effects due to having a family member who has it and having worked in a health foods store.

[par18]

Great topic. My own personal story was much the same pre Dx. Although I was not working whenever I was out and felt an "episode" coming it was an adventure. I had my share of minor accidents. The last I remember was about a month before my diagnosis. I was fortunate to be playing golf on a course that was surrounded by woods. As you can imagine I spent more than my share of time in there "taking care of business". Since going gluten free I have been so "cured" that I don't even think about it any more. The other day I was searching for something in my golf bag and ran across a pair of "clean underwear" that I had put in there long ago. I decided to leave it in there as a reminder of what would happen if I ever got "careless" on the diet. Come to think of it though I should at least get the proper size as I have gained sufficient weight since going on the diet. If I tried to wear them now I would probably end up with a "wedge(y)" I didn't want.

Tom

[happygirl]

Definitely keep Immodiums with you...in your wallet, car, etc, so that you always have some. It will help a lot. Best of luck.

[Canadian Karen]

Definitely keep Immodiums with you...in your wallet, car, etc, so that you always have some. It will help a lot. Best of luck.

I'm jealous of you guys. Immodium doesn't do anything for me..... I could eat the whole box and nothing would happen!

[jerseyangel]

The other day I was searching for something in my golf bag and ran across a pair of "clean underwear" that I had put in there long ago. I decided to leave it in there as a reminder of what would happen if I ever got "careless" on the diet. Tom

OMG Tom--what a great story!

[sickchick]

I just rarely leave the house. When I get in a predicament nothing helps at all. I have taken 6 Immodium all at once, and it didn't touch it. I was in trouble

I have very little patience with this.

[HouseKat]

I'm jealous of you guys. Immodium doesn't do anything for me..... I could eat the whole box and nothing would happen!

Same here. Lomotil is the only thing that I've found that will make a difference, and that doesn't even always work.

HouseKat

[melrobsings]

when i get gluten-ized I have to RUN to the pot every time I even have a little fart for fear of an accident! We are all with you!

[NoGluGirl]

Dear Lily,

I get very little warning, but I breakout in a sweat, become unbearably nauseated, have a sudden need to have a bowel movement (it tries to come out if I do not rush to get to the bathroom, like many, it is often a close call), I begin shaking all over, sometimes my hands go numb, and if I do not get a promethazine down quick enough, I get dry heaves that are so forceful I feel like my insides are emploding. A microscopic amount of gluten does this to me. I never chance eating out. Items with cc issues I refuse to eat. I wash my hands obsessively. It is difficult for me to completely avoid be cc'd due to sharing a kitchen, but I keep my cookware and other items in an airtight container so they cannot be glutened.

I also have trouble where I will fart out bile or something if I eat too much fat, because I had my gallbladder removed several years ago.

Sincerely,

NoGluGirl

[Canadian Karen]

Same here. Lomotil is the only thing that I've found that will make a difference, and that doesn't even always work.

HouseKat

Tried that too....... no luck......

[NoGluGirl]

Dear Karen,

My mother is currently taking a lot of medication. She finally may be convinced she could have Celiac as well. Mom is taking four different pills for her colon along with generic anti-diarrheal medication that is similar to Immodium. Now here is the kicker, she can still poop after taking all of that! You know that is not normal!

Sincerely,

NoGluGirl

[sfm]

Ok, does anyone else have the EMBARRASSING problem of sometimes not being able to control bodily functions?

I was recently diagnosed and I've been going gluten free. I have noticed a bit of an improvement in my symptoms but they are still off and on.

There has been a few occasions where I have no warning about going to the bathroom and have had accidents.

Am I the only one with this control problem?

I have never felt so incredibly embarrassed in all my life.

Oh god no, you are not alone!!!

You're new to being gluten free - it does improve with time, but right now your insides are still so screwed up, it's going to take awhile.

I still carry a couple of immodium in my purse, just in case - but I used to carry a whole box! Never mind the bloating and gas issues.

I wish I had more suggestions; I just can offer you hope - it does get better with time.

Sheryll

[Ken70]

I thought I has this all figured out until I flew first class to Europe recently with a group of business associates. First Class was great and I thought I had avoided any problem foods but later I realized it was the cocktail sauce for the 3am shrimp cocktail.

The 3 hours bus ride from the airport the next morning will go down as the most anxious hours of my life. Since we would be traveling on this bus for the next week (the bus had no bathroom) I had to basically tell everyone that the bus would be making some stops along the way or I would have an accident. Admitting that to 25 people in my industry who I did not know was hard but not nearly as hard as having an accident in front of them. I ended up with several close calls but no accidents. I have had plenty in the past though.

The point of me telling you this is that A) you are not alone and why should any of us be embarrassed anymore. This is a condition that we didn't do to ourselves and that when some f'ing food manufacturer puts this stuff in our food without us knowing it (why is modified food starch in cocktail sauce?) and we suffer as a result then I say to hell with what other people might think. Having said that, everybody I know would be sympathetic so embaresment is unnecessary anyway.

[JNBunnie1]

Tried that too....... no luck......

I know that this has probably been suggested to you before, and I'm sure you've already done lots of research and stuff, but it occurred to me that perhaps supplementing with a good dose of psyllium every day might 'tighten' things up in there so you don't deal with all that fluid? Like maybe it might soak it up?

[stitchy woman]

I, too, have had incidents and indeed, days I would prefer not to remember. I have had to run into convenience stores and spend an hour on the pot, and then buy something I didn't want or need because I felt guilty about using their bathrooms.

Years later, I have only recently been diagnosed, and although I am still getting used to the gluten-free diet, and making LOTS of mistakes, those days of urgent bathroom trips seem to be greatly reduced. As a matter of fact, everytime I see a wonderful pastry in the grocery store and think how good it would taste, I immediately balance that thought with how wonderful it feels not to be doubled in pain and hunting for a bathroom.

Good luck to you!