[thytaysmom]

Hello. I am new here. I am so glad to have found this forum. I have been having bowel problems since I was 19. Started suddenly one night when I awoke to what I thought was a stomach virus but then never got better. I went through many many tests just to end up being told back then I was making it all up and it was in my head, even though some tests showed inflammation in my intestines, I was easily blown off as a typical teen manifesting my troubles. The drs I saw back then made me never trust drs again, and I have gone years without seeing a dr even for other problems. Here I am today 31 and I am suffering more now than I ever have. I never ever leave my home. The 1 trip I decided to TRY to go out with my kids was catastrophic for me mentally as I had a urgent GOT TO GO NOW diarrhea episode and when I got to the bathroom, it was out of service. I had an accident on myself in front of everyone! I had to walk with my 2 kids all the way back through the store as the manager said she could not let me in to the bathrooms to clean up some and that I was causing other customers to leave and I had to get out of her store.I had to walk with the manager behind me, several store employees, my 2 kids all the way back across the store in utter embarrassment. After that is when I refused to leave my home at all. I get outside in my yard at my house but never actually go anywhere. On a normal day I can have 4+ diarrhea bowel movements, all are extremely painful with horrible stomach cramps and I have less than a minute to be on the toilet or I will have an accident. Then on a bad day I can go 15 times in a day. I also suffer from daily nausea, it never goes away but when my bowels are worse my nausea is worse. I finally, after years of just feeling hopeless and being totally isolated, decided to risk going out to a new dr that came to town 6 months ago.It is terrible fearing an accident.She did a colonoscopy 6 months ago that visually looked fine but a biopsy did come back showing inflammation with unknown cause. Blood work was all normal and stool sample all normal. After the colonoscopy my intestines and stomach went crazy on me. Not sure why or how but that test made everything so much more severe,I had no idea how severe things could be until then, and that is when I started refusing to leave my house. I did not even go back to the dr after the colonoscopy for fear of having an accident as I was going 10+ times a day, I even am awakened at 2am,3am,4am out of dead sleep with diarhea cramps and must get to bathroom before I am even awake. Finally, after many months of wanting to go back to her and not, I decided I cannot live this way. I went back in to see her yesterday,and yes I had an accident but I was almost home. She has scheduled me to have the light run into my stomach, more blood work, and another stool sample. She is not sure if I have IBS or IBD but said it seems more to be IBS, yet tests in the past and a current biopsy from latest colonoscopy showed SOME inflammation in my intestines, she still cannot tell which I have. No anti-diarrheal OTC med works, not at all and so she tried me on Lomotil. That did not work either I took 8 pills in a day as she directed and still would have diarrhea and I thought I was going to die from the stomach pains it caused plus it made me vomit terribly. She now wants me to try Levison but I am nervous because I have irregular heart beats and afraid the med will cause me more heart troubles. I have NO friends, my family does NOT understand and have actually blammed ME for my diarrhea, my hubby has to be the one to work and do everything like shopping and everything. I am depressed thanks TO my bowel troubles. I just want to be able to go out again. Nothing helps, I have tried probiotics, calcium, I have tried watching everything I eat, there is nothing that makes the diarrhea even slightly better or helps, fiber makes it worse, exercising does nothing but cause me to go more often. Herbs do not work, Align does nothing, and I just cry most days.I had my gallbladder removed several years ago. I have tried cholestyramine and no help there, I developed Intraheptaic Cholestasis of Pregnancy in 2005 and it helped some when pregnant but not afterwards. I do not know what to do. I want to have a life again, this had been totally disabling for me. Having no friends or others who understand makes it that much harder.How does everyone else deal with this? Anyone have diarrhea as bad as I do on a daily basis? I do not know what else to do.Before this became totally disabling for me I was full of life, I LOVE being out doors and going places and being out and now I cannot do any of those things. Being able to read others stories and have a place to talk about this is such a great help for me, as I have had NO ONE to talk about this ever. If anyone can possibly give any advice or other opinions on ANYTHING else to try or anything I would GREATLY APPRECIATE it!!! Thanks.....

 

[overitnow]

I do not know if this will help you any more than anything else you have tried, especially as the lack of a gall bladder will not help, in any case. Having said that, in 1998 I started taking a flavooid supplement, Provex CV, to control my cholesterol buildups. Over the next year it slowly reduced my 10 year case of D to a mild irritation. In the time that has passed since then, I probably have had about 2-3 urgent events a year. The rest of the time I have fairly normal patterns. After innumerable queries with doctors, researchers, etc., this past year I turned up an old study from the London Hospital that found a relationship in the way blood platelets behave in facilitating cholesterol deposits and in creating colon inflammation. They theorized that a medicine that could control platelets re cholesterol might work as effectively on platelets that control inflammation. That seems to be the case for me. (The lead researcher on the team that oversees the ongoing testing of the product told me they have had similar reports on general anti-inflammatory properties of the product, so it may well be working in a couple of ways.)Fair warning, it is made by a customer marketed company; but if you think inflammation is the problem, it is a pretty easy thing to try.Cheers,Mark

 

[BQ]

I am sorry you are so miserable but I think it is wise to wait until the tests are ALL completed before trying to guide you. From what I can gather from what you wrote.. you are going to have an endoscopy??? Is that right?? If I were you I would request biopsies be taken at that time. Also if I were you I would want them to rule out Celiac disease, as well as Habba Syndrome.Staying inside forever really isn't an option. So let your Dr know that. Also.. let your Dr know how depressed you are as depression and anxiety left untreated can only make you worse. So you need to see about getting those treated as soon as possible as well.You say you have tried everything. You don't say for how long you tried them or whether or not you tried more than one thing at a time etc.. so I don't really know. (Just fyi.. most IBS'ers find a collection of treatments working in concert seems to control their symptoms best.) DOn't get me wrong one should always try ONE treatment at a time until one knows how one responds to that treatment before adding something else to your symptom management arsenal.You report nothing has worked... and, sorry to say... that makes me a bit doubtful that you have IBS. If you do end up having it though you may need to try things again or different things and more than ONE thing may end up helping you.But right now the best thing you can do is get that endoscopy and biposies taken. I urge to make early morning Dr. appoinments and try fasting til you get back from them to avoid accidents. OR just use a liquid meal before you go.Keep us posted

 

[thytaysmom]

I will look into the flavooid supplement, Provex CV. I am willing to try anything! Thanks for the suggestion!No being indoors for forever will not work, it is not working now it is ruining my life. I did tell the dr how depressed this has made me and how emotional this all is, she is aware and said it is totally expected. I actually broke down crying like a baby yesterday at my visit about what I am feeling and what I am dealing with.Afterall, it was the first time I had been out of my house in months and talked to someone who understood. She gave me this website for support and said I needed to find friends who deal with this,even if they were online, and that is why I am here

She stated anti-drepressants would do me good since my emotional state is due to the diarrhea and that what would help is trying to find out what is causing the diarrhea not drugging me up on anti-depressants.As for things I have tried, MANY things. I have had this for 10 years+. I know to wait on the endoscopy,yes it is an endoscopy I am having Tuesday, but I fear it will show nothing more than has showed in the past, which was nothing that showed any cause for the chronic diarrhea. The blood work and stool sample were okay 6 months ago when she first had me do them so I just guess I figure they will be the same this time too.She checked for celiac disease, intolerances, allergies, and some other things and nothing showed up. I used to not eat when I had to go out, even if that meant all day and when this all started it helped in the beginning. Then after a couple months that no longer mattered. I can eat and drink nothing now all day and still have diarrhea. Small meals or large meals does not matter either. I am even awakened at 3 in the morning with horrible diarrhea. Eating or not does not matter now.I have tried so many medicines alone and in combination that I cannot even count them! I have gone years in between my last visit years ago and the current visit to the dr now and Lomotil was something new and then the Levison so that is why those are the only 2 things I have tried recently. I was even put on meds to counteract chemo reactions in patients having chemo, I think one was Kytril but cannot remember now,for like nausea and diarrhea years ago to try to stop the diarrhea and nothing worked.I have gone 10+ years with no help, had drs tell me to my face I was just making it up or crazy, went through so many tests with no answer, and now going through tests again and possibly still no answer, and I am worse than ever. It is hard.

 

[BQ]

She stated anti-drepressants would do me good since my emotional state is due to the diarrhea and that what would help is trying to find out what is causing the diarrhea not drugging me up on anti-depressants.

Sorry I don't understand this statement.. Can you tell us what you mean here??? Does this mean she said she wants you to try antidepressants but you don't want to????10 years is a long time and I am glad you finally sought treatment. Let us know what her diagnosis is after the endoscopy results are in and explained to you.PS Also have you read this article by our Dr Bolen?? It really could help you no matter what diagnosis you end up with... The things she mentions would be genrally applicable to any chronic diagnosis I would think."Healthy Thinking For IBS"Just click here to read it:http://www.ibsgroup.org/node/515

 

[thytaysmom]

Sorry I don't understand this statement.. Can you tell us what you mean here??? Does this mean she said she wants you to try antidepressants but you don't want to????

I told the dr I was depressed, I cried with her and she said she could see the toll the chronic diarrhea had taken on me. She told me she did NOT want to put me on anti-depressants because the depression I was suffering from was from my diarrhea not from depression of unknown reasons like most people with no medical reasons. She said we KNOW why I have the depression, that it is not a chemical inbalance like most people have with regular depression. She said it would be like someone telling me to go to a therapist for deression BUT that instead of the therapist trying to find out WHY I was depressed she would already know and we would talk about the chronic diarrhea that MAKES me depressed. So she refused to prescribe me anything for it and instead insisted on trying to find the cause of my diarrhea and then try to help the diarrhea best she can which in turn would help me with the depression.

 

[BQ]

Ok I get it. .. Hmm apparently your Dr. hasn't heard about the benefits of using antidepressants at lower than therapeutic dosages for depression itself for treatment of IBS. Here on our Medication page you will see the info about using anti-depressants for IBSjust scroll down a bit)http://www.ibsgroup.org/medicationsWhat she said about them is generally correct about them as they relate to mental illness but that is not usually why they are prescribed in people with IBS. You have experienced accidents and other emotional trauma from this "chronic diarrhea". There is no reason that you shouldn't seek treatment for that trauma. That trauma in itself can cause other emotional responses that can aggravate symptoms. It sounds like you & your Dr are saying the only reason one seeks treatment for depression is to find out why one is depressed. That is inaccurate in my humble opinion. A therapist could help you learn how to cope with and manage your illness and process the emotions connected to it and the trauma is has caused. Not just find out "why" you are depressed. So if I were you ... I would still seek a therapists' treatment.You can find a referral by calling any Mental Health Dept of hospital's nearby.Otherwise right now we know you have chronic diarrhea.. but we don't know why. So therefore she isn't settled herself in an IBS diagnosis. So we need to wait for an actual diagnosis from her to guide you better.

 

[ssnc78]

I'm not sure if this will help or not, but hey, this might work. I was diagnosed with IBS-D a few years ago and had my gallbladder removed 8 years prior to that. My symptoms were much like those you had described - complete and total misery - everything was affected, work, home life - you know the drill. I am not a fan of taking medication every day so I wanted to try to figure out the root cause of my problem. I tried changing my diet to focus on whole grains, lean proteins, fruits and veggies. My symptoms got better but they were still prevalent. Here's where my story might be able to help. I went on vacation to Europe, to a country where the food was cooked fresh and bought from the market each day, and noticed that I wasn't having the same symptoms as I had been having. I could eat food and not have to run to the bathroom 15 minutes later. I chalked it up to being stress-free so I didn't think much of it until I took a bite of a pre-packaged croissant. After that bite, my symptoms immediately returned. After some trial and error, I found that if I stuck to a diet free of preservatives, I could lead a normal life! Believe me, it isn't easy (or inexpensive) to eat this way, but it is so worth it! Perhaps this could help you as well - I hope it does...hang in there.

 

[peggykkkkk]

hi.we all sing the same ole song.ive had that embarrassment myself,a few times over the years.i rarely went out either.talk to your dr. about this pill.nip it in the butt now if you can.familys is the reason,im pushing this pill so much.my kids went through hell for years cause of my bowel.i missed graduation day,i missed it all.i dont want familys to lose out like my kids did all those years,nobody should ever have to live like this.i could never take them anywhere,guilty conscience dont help.and its not your fault.kids cant always understand.the way you feel mentally is caused by the ibs also,how can you not be depressed with this stuff.i was a single mother bringing up m2 kids alone.it wasnt easy,by know means.they survived it, there in there 40's now.but minus the ibs they would have had a hellova better life.so for the younger familys,talk to your dr.its the only thing that totally works for me.glycopyrrolate 2 mgs 2 xs a day.good luck.peggy

 

[thytaysmom]

Thanks for all the replies!! I have also missed out on SO MUCH and yes, my kids are also being affected by my bowel troubles. I have a 4 and 13 year old and missed everything so far. I do not go out to their birthday parties, did no go see family at Christmas or any holiday, son cannot play sports because I cannot take him and stay then pick him up and hubby is so busy trying to work and do everything because I cannot he has no time, cannot go out with hubby and kids to do anything either. It is really hard, I hate it and yes I do feel guilty and sad I am missing out on so much, who wouldn't? My hubby takes the kids and they go on vacations as I cannot go so I sit here alone. It is not fair to them that because I suffer and cannot leave the house they must not go on vacations or enjoy life. People think because it has been so long that I have been dealing with this that my family and I would be adjusted to me not going out but that is so NOT the case. You never adjust or get used to this.NEVER. My Hubby also struggles with me having this chronic problem, he has added stress of being the only one who works and then he also has to do everything else like shopping, teacher conferences, taking kids any where, I mean everything. I was super healthy before this all started, had not even had a cold in years I was so healthy and that is who he married, then almost over night my life changed so it is hard on not just me but my entire family.As for the suggestion of still getting therapy, I am sure that would probably help to be able to talk about this, but that would be IF I could leave the house.Then again if I could leave the house some I would mentally do better. Things that seem so little, taking a trip to the gas station, going for a 30 minute appointment to a therapist, those things are NOT simple for me.Maybe if I did not have so many episodes every day I could "risk" going out but I just have so many diarrhea attacks everyday, starting as soon as I awake and will be in the bathroom all day long off and on. Not fun having an accident in public for everyone to see as has happened to me before so I just cannot risk leaving the house until I find something that at least lessons the amount of times I go or something.My family and I buy fresh veggies and fruits. I try to stay away from frozen fruits and veggies, processed foods, and we all eat healthy. I cook homemade meals every day. Very strict about what we eat.Of course this has not helped me, unfortunately.I have printed off all suggestions, THANK YOU ALL for them, I am taking them with me to the dr on Tuesday. At this point I feel everything and anything is worth trying because what do I have left to lose? I already have lost my freedom and confidence and etc. Thank You All!!!

 

[Kathleen M.]

There may be a therapist that would be willing to do a few phone sessions so you could get enough control to go out.Also there are home hypnotherapy CD's for IBS and also a lot of self help workbooks for anxiety and depression if you can't find a therapist that will do stuff over the phone or any other arrangement. If your diarrhea is that severe and you are in the USA you might want to ask your pharmacist what doctor in the area prescribes Lotronex. It is for IBSers with severe diarrhea, and for the right people can be quite the miracle. The pharmacists sometimes will give you the names of someone tht is prescribing it in the area. Not all GI doctors do the paperwork so they can prescribe it.Working with a GI doctor is something that does need to be done to see what treatments might work, you also may need to be checked for microscopic colitis if you haven't had biopsies done during a colonoscopy while the diarrhea is so bad.

 

[rosielee]

Psyllium Husk fibre may benefit IBS sufferers suggest a new study Healthy Bowel Company web site- kindly sent to me by another member on this forumdont know how to post you the linkbut here is an excertp copiedand pastedIn the study it was found that Psyllium Husk fibre improved the symptoms associated with irritable bowel syndrome but some fibres, notably insoluble fibres, may make matters worse. There have been a number of similar studies over the years that have indicated that soluble fibre is more healthy for the bowels than insoluble. The reason for this is that soluble fibre is more viscous and that makes it more ‘gooey’ but more gentle. The most ‘gooey’ fibre of them all is Psyllium. This is the one fibre that I know of that is capable of relieving both sensitive bowels (diarrhoea) and mild constipation. This is why I refer to it as the ‘Rolls Royce’ of fibre. Because of its soluble nature (it absorbs more than 25 times its own weight in water) it forms a soft gel once mixed with water. It is this soft gel that travels through the digestive system gently cleansing things along the way. Because of its non-abrasive nature, it can help consolidate a loose situation, thus allowing the all important bacteria to re-establish itself again. In the same way with constipation, the soft bulk that psyllium forms also helps to prevent waste matter drying up in the large bowel, thus making it easier to expel. In the study, those sufferers of irritable bowel syndrome who were assigned to receive psyllium, experienced a 90 point reduction in the severity of their symptoms, almost double the levels observed in the placebo group. The other group were assigned insoluble fibre in the form of wheat bran. Here there was a reduction of 58 points in the severity of symptoms, although this group experienced a high level of early drop-out following a worsening of their IBS. In my experience, the bran fibre makes things worse because it has a ‘scratching’ effect. If you add this to an already inflamed situation then common sense would suggest that bran fibre should not be recommended. It is for this reason if you are recommended to take more fibre for IBS, always go for something like psyllium or something very soluble.

 

[askmom]

So sorry about everything but can relate. Have you ever tried a totally , I mean totally.... gluten-free diet? It has helped my bowels tremendously, try it for 3 days and you'll know. Also, my husband had to take a cholestrol med and for some reason now he has normal bms where before he had to run with "D" alot. I would encourage the anti-anxiety and anti-depression drugs also. THink positive, this new dr. may help you! You are very strong for dealing with this all these years, we are all stronger than we feel.

 

[rosielee]

can i just add that people have mentioned to you anty anxiety drugs and depression medications as if they are just a simple thing to take, a lot of these depression medecines can make you dependant on them- im not running anyone down from being on them, im just saying you need to have a full think about it before you take anything, and i would think it as last resort, i would go for natural remedies first and then when that has been axhausted and failed then go for the drugs. a couple of friends i know have taken anti depressants to help them cope as they are teachers and have busy lifestyles and find it difficult combining pressures of teaching and a family life- i think they ahve been pleased with the results of the medecine- whcih sounds something like celatramzam- a seratonine booster- they deffinately cope better with it but have surprised at how hard it is to stop taking them, they thoguht they could stop when they wanted to and they actually feel a difference if they dont take it in the morning- they get edgy and irritable and dont feel normal until theyve takien it- that scares me. i dont criticise anyone who is dependant on anti depressants and its always important to treat these things-treating it is better then trying to put a brave face and suffering, and for some dependence is the lesser of two evils- dont get me wrong- im not criticizing anyone who takes them, and has to. im jjust a little bit concerned that it has been suggested as if its such an easy route with no pay backs. i think you should take a good long look at thism issue and some people on here have had great benefits from acupuncture and hypnotherapy. i have had hypnotherapy and i can tell you- it did wonders for my stress levels, i realsied that i thoguht i had loads of problems but the root cause was the stress and then it had knock on effects, for example you dont deal with your bills properly because you feel stressed and this causes other problems etc. i couldnt afford to continue but i think one session a month would have been enough backed up with tapes int he meantime. i think you are in a situation where the anxiety and worry about your condition is not helping and you need atwo prongued attack- finding a teatment for chronic D. and find a treatment for your anxiet6y and worry levels. i also worry how people are advising medecine for depression as if its a magic pill- if you arent getting out- you are going to have a low quality of life and you will feel depressed- a pill isnt going to change that- if you worked on geting better then the depression will alleviate itself with the change in your lifestyle- but i think working on calming down, and keeping those anxiety levels to a minimum would be good- and at the end of the day if pills will help then you should go ahead- but only after thorough consultation with your doctor, and like someone said- its not really up to your doctor to discount it for you- hes not the one with chronic IBS- its your decision.

 

[mouth]

Just read ur story sorry ir having such a hard time cant offer any advice mine alternates but finally getting somewhere seem 2 think its my gall bladder but after reading the posts here will think twice about getting it removed. Hope ur doctor finds the answer soon and all i can say is thinking of u with lots of hugs

 

[BQ]

Rosie I thinki you misunderstand the use of anitdepressants in the treatment of IBS,. They are not prescribed in the same dosages for IBS as they are for mental health issues! When we refer to antidepressant use in IBS we are talking about LOW dose antidepressants. See our medications tab up above in the menu bar for more info!Someone with diagnosed anxiety issues can't always "just calm down". They may need medications or therapy to help them learn how to train their bodies to do that. AND there is NO shame in that.PLEASE try to remember that some folks have NO choice but to take medications. And speaking negatively about them is not helpful or supportive. If you do not prefer medications... that is fine. Just don't expect everyone to have the same preferences as you do. There are PLENTY of other treatment options discussed besides medication as you can readily see from a brief perusal of our many & varied forums.

 

[peggykkkkk]

hi again,about anti depressents,my shrink is great .he understands big time,about this ibs.he's had me try all kinds of meds for ibs,(anti depressants).the one i found worked the best for me was immipramine,one of the side effects is constipation,thats the first thing he looks for when he looks up meds. to help us with this.for us thats a good side effect.it seems to bulk up the stool.other than the pill i take now i found immipramine the best anti depressant for my ibs.which is chronic diarrhea.by the sound of it,your dr. should be a patient.some of them ,aint wrapped too tight either.you just have to find the right one.just keep persuing everything till you get an answer.never give up.you will get through this,i got my answer.i'll tell you ,your symptoms are very much what i have this glycopyrrolate could work for you,talk to your dr.o dear i hope your not in the uk,you cant get this drug there.if not try the immipramine.hang in there.better days are coming....take care peggy

 

[jmc09]

You sound like you are in the position I was 20 years ago.I was prescribed Sulfasalazine 500mg 2 tablets 4 times a day due to constant diarrhoea and an inflammation of the bowel.It is an anti inflammatory drug designed to dampen down inflammation.Incidentally I was prescribed this drug a couple of years before I actually used it but refused to take it,more fool me.Hope this helps.

 

[jmc09]

Peggy my doctor got a researcher to do extensive research into glycopyyrolate and said there was no way he could give it to me based on his findings.But incidentally he has just prescribed me imipramine which you said was very helpful for you.How long did it take to act and what dose were you prescribed?Thanks

 

[rosielee]

a message responsding to moderators commentsi was actually careful in saying i didnt disagree with anyone using anti depressants but i would advse long thught about it- thats all. you are right there is absoluely no shame in being on them- perhaps my message wasnt clear that my view is a biassed one after 14 years addiction to precsribed medecines- so i am coming from way, way the other end of spectrum where i would like doctors to think more about what they are prescribing. i respect your views but still maintain that anti depressants when someone is feeling down about something- its natural when you are in pain and going to the loo all the time to feel down- if that person concentrated on that alone then the depression problem might ease up- might-. turinng to a ti depressants without giving it major thoguht would be silly- becuase people sometimes start on low doses and find they dont work and then increase- and you know- half the time they don work on people anyway- im just saying they arent the answer for some people. i think its only far to be able to put this point of view accross- its a fair point, particularly when some people are getting worse on some of these medecines- some people have gone right ff the deep end on rozac for example- it is actually a very dangerous area and if you look at findings on these youd see that i hae a fair point. perhaps what i didnt emphasise enugh- and i thought that i did- was that there was no shame at all in needing them- i myself hae been on precription drugs for fourteen years- completely deendent on them- so i wouldnt do the uper hand thing n anyone, an df anyone thinks i look down on this i dont, i just think its fair to give the other side of a balanced view some people have had help from anti depressants- other havent- others had hep but even on the minimum dose do find themselevs unable to stop taking them which is something everyone needs to know about surely- there are als side effects. but i respect our views and i do not look down on ayone being on them, id just wish to highlight that there ca be negatives and someties its best to battle on - sometimes though its best to get treatment and not to battle on and a person shouldnt discount taking anti derpressants because of any prejudice against them and it would be foolish to refuse taking anti depressats if you were really low and at rock bottom. but do think that seeking out the root cause of things and trying to work on that works better tha trying to cover things up with pills- i should know! it ca be a dangerous area, but what ever helps you to get through ultimately is best, im the very last last person to be criticising anyone for taking anything- i am just biassed regarding my own story and it would be nice to think if people could get by without then they should give it a go. its not always the answer- i think its fair people get a balanced view- thats all i was tryint o say- i was certainly no aginst them and if i came accross as if i wholly dscounted their use then i got my words wrong. sometimes i lok back on all y years of prescription medecines and just quite simply wished i had found other ways through .