loss of bm control is it just me?

[barb61]

after i got diagnosed & started meds, i lost that control. i timed myself, & i have only a few seconds. i asked my entorologist if the meds caused it; he said no, & maybe it's just me because it's not crohn's either. I've been off the meds for almost a year because i can't afford them & i find that 2 coffees in the morning helps because it flushes out the toxins. but i still have no control; i'm always afraid to leave the house in the morning. to make things worse, i might be forced to get a job outside of home & there's no way that i'll be able to do it.having accidents at home is one thing, but elsewhere?  i'm wondering if anyone else has had that experience & if there's anything that could help?

[jacojr]

Journey to No Man's Land - The End of Suffering

This is the book  Spoke of. It saved my life

[jacojr]

Keep these things in mind.
A. Food effect Crohns
B. Medicine effects Crohns
C. Mental stability effects Crohns
D. Crohns effects what you eat
E. Crohns effects all medicines you take
F. Crohns effects your mental stability.
Sounds simple? Its not. You have to find a doctor you trust best is one that knows that depression lack of sleep and the list above makes Crohns worst and can kill you. I have had Crohns 2001. I nearly bleed to death before G P found out about Crohns. My doctor will not give steroids because long term use can be worse than Crohns. Vanderbilt Medical in Nashville has saved my life. Humaira once a week and a very strong office support for patients, has help.me more than steroids. Dr. David Schwartz in the Ibu clinic if you can go there. REMEMBER  GOOD MENTAL HEALTH HELPS MORE THAN ANYTHING. After a year in a half of once a week therapy and Humaira I am so much better but I don't have to worry about where a bathroom is unless I eat something I shouldn't are worry about stuff that I shouldn't or take medication that I shouldn't easier said than done and I suffer some just not like it was when I was pooping 5 to 15 * a day with blood not able to work not able to date that's about all I have to say except good luck read the book no man's land freedom from fear about a man who had Crohns and was going to kill himself. Simple reading but great information

[barb61]

thank you for the reply! i'm not sure that my problem is the same as your mom's because it doesn't happen to me after i eat; it's all morning (about 5-6 times between 6:30 and 11) & i usually don't eat breakfast. occasionnally it happens in the evening but just once. i still think your ideas are interesting, especial;ly because i've been trying to figure out what exactly it is trhat connects fibro (which i've had for years), arthritis (which i've also had for years), diabetes with crohn's. my spine has been deteriorating & at times i don't know what's causing my pains anymore! but i do know that it's not in my head; there are too many symptoms there, & they had started years before i had even heard of fibro & crohn's. i'd love to participate in your q'aire. i'm in canada, however, but i'd love to help anyone find answers to these questions. i've had my share of suffering & i'd like to help. by the way, ever had of rectal spasms that prevent your bladder from emptying? now there's a pain. let me know if that sounds familiar.
good luck, barb

[Hank0303]

I am a 29 year old female, and I have Crohn's disease.  I never had problems (unless I was REALLY sick) holding it until I had surgery for fistulas.  I had over five surgeries, which got rid of them FINALLY, but created a new problem.  I then had my rectal muscle cut in half and then sewn back together to make it stronger.  I do Kegal excercises every day (or I try to).  But, about a year ago, I began having diarrhea and NO warning.  This wave of heat would come over me and then it was just there, no time to do anything.  I know where every bathroom is in my town and I also have a change of clothes with me.  I tried Librx, Levsin and Lomotil.  Lomotil is the ONLY thing that helps, but I hate taking it.  I have to take up to 8 each day just to be able to function normally.  It's very crippling to be trapped by your bowels.  I go a a so-called "Crohn's Specialist" at one of the best hospitals in this country and he offered me antibiotics.  I asked if he thought I had some sort of infection and he said "no".  He has not done a colonoscopy on me in 5 years-you should have one at LEAST every other year.  So, I started seeing an Internist, who will not do a colonoscopy on me either.  I demanded he test my gallbladder, because I had heard of Habba Syndrome.  It ejected 80% of its contents, and 35% is normal.  But, HE said 35 and above is normal.  In the meantime, he started me on Questran-a bile acid binding medicine.  You mix it with oj.  After the test, he said everything was normal and I could either keep taking the Questran if I think it is helping, or I can quit taking it.  THANKS A LOT!  I want to have kids very soon, and I cannot do that on Lomotil.  Now, I am trying to find out if maybe I have Celiac Disease.  It mimics the symptoms of Crohn's and IBS.  You have to avoid gluten-bread, pasta, wheat, etc.  That would be a lot easier than living on Lomotil.  Don't become a prisoner to your toilet.  Demand that your doctors test you, even if THEY don't want to take the time to.  I also work with a lady who has the same exact symptoms and she has had her gallbladder out.  More women suffer from this than we will ever know because no one wants to talk about it.  I wish you all the luck.

[MentallyCharged]

sorry about the spelling mishaps. I do not type often so my errors are due to keyboard errors not my spelling. Take care Barb and I hope that all the women afflicted by this can get together, rule out thier testings and share with thier MDs what others are saying about this. Is it in the water, the air. I am 48 and I remember women always worring about a baby boom, what birth control to take, ovarian and or breast cancer discussions then now it is Fibromyalgia (unknown cause similaer to MS) this new doodoo boom that no doctor or doctors around the country can figure out. FM was the big no cure no cause disease of the late 90's to early milenium to this unknown syndrome that is attacking women nation wide. Is the FDA regulating this and doing studies and research. Controlled studies is the best way to find out what and why and new meds to help stop or prevent this. Is the majority caucasin? Did diet have something to do with this. I have even read that most doctors are calling this a psyciatric disorder because they cannot see with probes, microscopes, blood work and so and so on. The majority of women have had symptoms of Fibromyalgia in the past (pre menopausal) which most MDs are calling a psychiatric disorder. Well there are way to many women inflicted with this new and exhausting syndrome to even be considered a disease of the mind. Sooner or later this new syndrome of women will be called mental also. Women need to start getting togeather and demanding controlled studies of this. Like I stated in the first posting. Lets not stay in one forum, let us all for the sake of all women take a stand against our goverment and get some kind of controlled study going instead of us all just talking about it, everyone do a history (medical) I have a list to start just by asking ?'s and so far all of the women have started out the same. blaming this on everything from diet to nerves and out of curiosity I would like to start a non profit study with the help of other women that have the same thing. If you can please try to spread this around to all the medical websites you can find. Lets try and do a ?err asking the same ?'s to all those suffering from this life altering disease. Like my mother you now have no life, you also have or are becoming a prisoner to your bathroom. lets take a stand togeather for the sake of all women. from what I have researched I am at risk of this also. I need help to further investigate this. this does have something to do with the nervous system that is in the spinal cord. This is what non functional disorders are. if you look up PEPSIA, I use google you will find the difference between functional and non functional disordes of the Gastro- Intestinal tract, they can be found in the spinal colum to the brain and I do not mean psychiatric. Again take care and hope be wit you. diana

[MentallyCharged]

hi barb, My mother is having the same symptoms as you and I have searched the web over to help her find out what it is taht might be causing all of this. when she eats something, anything, she has no warnings at all but better be by a bathroom, as soon as it enters her mouth it is like she has a tube that takes it right through her body and out of her rectum. I found a web site and did not write down the address but it is about a doctor SAAD HABBA. ? do you have a gallbladder? this doctor has treated several people that have the same, identical symptoms as my mother and you and grom what I have researched several people, more women than men, seems to be a disease that attacks women only. anyway according to Dr. Habba the body acts like it has no galbladder at all and without the bile that the gallbladder the body starts to use the bile from the liver causing a fatty liver. has your doctor checked your liver enzymes? My moms went so high that they thought she had hepatitis. well that was negative. they put her on meds for crohns and no results, for that matter things became worse. She was taking Lipitor for her cholerteral for well over 5 yrs., they took her off of it thinking that this was what was causing her problems with her liver. I also have a friend that has the same symptoms and this is mind blowing to see so amny women not only past the age of 60 with this problem. I am going to suggest to my mother to start a room in PalTalk out of curiosity to see just how mant women in the U.S. have this new and strange disorder of the Gastro Intentinal tract that seems to be attacking women only natiom wide. good luck and please try and post something back to me about what testings you have had done, I can relay this to my mom that I am so worried about especially the lack of nutrients that are not being absorbed from the foods you eat and even supplements are just passing through. I am the oppisite, I sometimes wish I could get even a loose bowel movement. please keep posting because I am trying to do my own study on the gastro intestinal history of the women afflicted with this new syndrome that no gastro MD has yet to discover. So far the majority of women I have shared with all started out years prior with diagnosis of colitis, diverticulites, chrones to cancer of the colon. They had trouble when they were younger going to the bathroom and now they all live in there or close by. Some women are wearing diapers, some even have potty chairs close to where they sit and still have clothing accidents. 4 women have had thier carpeting removed because if they can get thier clothes up or down in time they miss the pot. good Luck and take care. I am sorry to hear this problem has stopped a normal lifestyle for you but i am trying to get to the bottom of this matter. All of the women I have talked to and shared on the web with all state that thier MDs and gastro doctors are all stupified by this. from what I have researched it is a non functional disorder wich means that it cannot be seen by the naked eye or by microscopic eye either. all blood work is normal except for the liver enzymes and they cannot put the connection togeather so far. Look up DR.Saad HAbba and go from there, If I can get a chat room going I will ASAP. Fincially I cannot afford to start a forum for women only that have this disorder. take Care and hopefully we can stay in touch.

[barb61]

thanks for the reply; looks like it's not "just me", like my entrlgst said! as for the diapers, i know exactly what you mean; i eye them too! but i just can't imagine how i could use those on my way to work; i don't drive; i'd pretty well have to stand on the bus, & what do you do when you get there... by the way, i was prescribed sulfasalazine; the oldest kind of meds & they're the cheapest because of that. i can't even afford those; i have no drug plan & unstable income. i will apply for disability but i hear it can take 2 years or more to be accepted, & i'm not even sure if i'd qualify. i have a bit of everything; arthritis, fibro & carpal tunnel (although i think there's more to it than that because i have problems with my legs and feet), but each is moderate. how about you, do you have arthritis yet? what about waking up in pain every morning, an hour before your wake-up time? 15 years before crohn's manifested itself, i started waking up in excruciating pain; my stomac muscles would twitch until i'd get up & move around, then the pain moved to my back. boy did my belly problems seem like nothing then! luckily, this is now rare. hope to hear from you soon, take care

[Tuffy4u]

Hi again, now it is time for me to talk to you about you. You will become an expert as to where restrooms are. I havent been able to work for years because of my issues with ne ver knowing when I am going to go. Sometimes I dont even have but 3 second warnings. The other day, my ride to the Dr. came to pick me up and I went down to the car and had to run back inside. I actually had to grab a handful of undies and shove them in my undies in case I had an accident on the way. I was only 3 miles away but it felt like an eternity. So, oh boy ,can I relate. What kind of meds were you on that you cant afford???? Maybe I could help some how??? Grown up diapers are right around the corner. Every time I go to Wal Mart, I go past them and feel sad cause I know some day I will end up in that Isle out of necessetie ?? I cant think of how to spell that???? Anyway, keep track of what you eat, when you go, what it was like and soon you can get a little bit of control. I so understand that situation. My heart feels so much for you. Take Care of yourself. Lots of rest helps.