[cherrypie09]

I have had this Ibs-D for 11 years, last 3 bad, and since last january, every day, so I take Imodium every morning before I get up, sometimes I will have 2-3 very loose bms in a morning, I also take colfac for spasms, not helping much though, But since last wednesday I have had stomach cramps 2-3 times a day and urgent loose bms and I am taking 3-4 Imodium instead of the usual 1-2. I have bloating and wind and pain in the tummy 24/7 and My doctor says there is nothing wrong , its my IBS-D, Ive had all the usual tests and that I must get on with my life and not get uptight as it will make it worse, I know this, but on days when I am relaxed and I still get cramps and multiple bms, it makes me uptight and not want to go out in case of an accident. Why cant the docotors do more and why cant she understand how it makes me feel, in that im worried to go out, I suffer from anxiety and depression and am on tablets for that and have CBT. My doctor says there is nothing else she can do for me. I have just about had enough, my life is gone, I dont work, but will have to eventually find work as benefits wont pay out forever. I dont see how I can work like this. I have tried mikes cds, calcium, probiotics, antispasmodics, Imodium, nothing works. So fed up and unhappy.Any help , advice please. Desperate.

 

[peaches41]

So sorry for you cherrypie, you sound so desperate. I can't suggest anything that might help you as you seem to have tried everythng. All I can do is to offer support, and a friendly ear.pm me if you want to, I send you hopeful wishes that this bad phase will pass and you will at least get some rest from the constant suffering. The weather in UK doesn't help, this winter is doing us all in, maybe when the Spring finally arrives we will feel a little better and more optimistic about our future health.All my good wishesEve

 

[transatlanticist]

Cherrypie, I'm so sorry to hear that things are this bad. Hang in there...it has to get better from here. Are you talking to a gastroenterologist or your primary care physician about your problems? My primary doctor was utterly useless in helping treat my IBS ("Just eat more fiber," she told me exasperatedly. Yeah, right!) and seeing a specialist was the best decision I ever made. He prescribed, after a bunch of tests came back negative for Crohn's, UC, ulcers, celiac's etc., a drug called Lotronex in January. Before this I had tried innumerable OTCs, probiotics, antispasmodics, "natural" remedies, restricted diets...I was in a drug-induced haze every day for a good three months straight, not to mention that none of these treatments helped with the pain, and I was constantly nauseous or hungry and sprinting to the bathroom. It was horrendous. But Lotronex honestly has been life-changing. It's a "riskier" medication but at the point when I began taking it, it was worth it. I was missing work and class regularly, I was considering a medical leave from college, I wouldn't be able to go to graduate school or apply for a real job after graduation, I couldn't go out anywhere with my friends... But now I've reclaimed my life. I can go to restaurants and eat normal foods off the menu (instead of rice and ground turkey every day). I haven't missed a single day of work or school since the medicine started working. I still have some symptoms that are brought on by stress, anxiety, certain foods, but 95% of the time I live and feel like a normal human being. That is an incredible feeling. If Lotronex isn't right for you, I really hope you find something that works. My best wishes,transatlanticist

 

[Kathleen M.]

Print your post and take it with you to the CBT therapist.These kind of catestrophic nothing works nothing will ever get better, I don't now how I'll ever work or have a life thoughts are the kinds of things the CBT therapist may want to address as they are exactly (from what I found with CBT) the kind of thoughts that make IBS worse than it would be on its own. They also will make the anxiety and depression worse and harder to control, which also will keep the IBS bad.None of the things that control diarrhea will do more than control it for a short while. If they control it at all, that means they are working, not that nothing works nothing will ever work, etc.You may have to change expectations to "I will have some symptoms, but ever human has some symptoms some of the time even if they don't have IBS". If the only thing good enough to feel better is every day is always great with no symptoms at all that will also keep you in the cycle that increases symptoms. You don't want to set a standard no one can live up to. That never does anyone any good.No one goes from severe symptoms to no symptoms at all overnight. So try to look for having fewer symptoms on any given day as progress rather than seeing having a symptom as a complete failure. If you were 50% better or 75% better you would likely be really close to being able to do what you used to. You don't have to be completely symptom free for weeks on end before you can have a job or go to the store.

 

[clareuk]

I'm really sorry you going through so much at the moment. I have suffered with this for a while so I do understand. Doctors are useless aren't they. If they had to just be left to get on with it, they'd be searching high and low for the causes. When things were really bad I used to get up at 6 everyday and take the immodiums immediately as they always as they took about 3/4 hours to kick in. I was still on the toilet for hours in the morning emtying everything. I still take them straight away but thankfully it isn't watery at the moment. To be honest I didn't eat much because I knew it would always come back out again and I had to work. That was the only way I could make it a bit less but I lost loads of weight and looked and felt really ill. Now I'm older and a lot grumpier if I had my time over again, I would go to the doctors and kick up hell. I used to listen to them and go away for months at a time trying to cope with watery diarrhea and a full time job. I thought they knew best and I put up with it for years. I still have problems and lately it's been pretty bad again but it's manageable at the moment.Making an appointment to the doctors is really difficult when you have diarrhea and I don't think they appreciate that either really. It takes me hours to get ready to go to the doctor. I think you should dose yourself right up and somehow summon the strength to go back again. Go back and tell them off, tell them this isn't acceptable and that them fobbing you off isn't going to stop the problem and you are not going to accept being told to deal with it. I think if you speak to them as an equal that helps a lot. I honestly wouldn't accept what they used to tell me again! As I say I am older now and won't put up with things like I did. If you really can't get there, tell them you need a doctor to visit you. Do you have anyone who knows exactly what you are having to deal with? I had my mum becasue I lived with her at the time, so that might help if you take someone with you for support. I'm here anytime you want to talk to someone who has been where you are now. They just don't understand what it is like - they just don't know how terrible it is trying to manage it because they haven't had it. Don't forget anytime you feel that you can't deal with it any more give me a message - Claire

 

[cherrypie09]

Thanks claireI have made an appointment with my doctor for monday, I am not very good at standing up for myself, but will have to try, I sometimes take my husband with me but he has to work on monday morning. Everything I eat at the moment is going straight through me, with wind in the low abdomin and lots of poping and movement then the sudden rush to the toilet.How are you doing at the moment. ?

 

[clareuk]

I know how hard it is, when all you want to do is get out of the room as quickly as possible. I didn't want to be in the doctors room more than necessary but I think you do need to try them again. I'm not saying cause trouble and get yourself thrown out

but talking to them firmly and on a more equal footing sometimes helps. When you say that you take your immodiums before you get out of bed, I just wanted to say that never worked for me. I tried setting the alarm clock at like 4 a.m and took them thinking they would then have worked by 6a.m. but that didn't happen. they only seemed to work when I was up and moving - don't ask me why. I was caught out with that several times. So I had to take them when I was up and out of bed, and i couldn't go back. I still had to sit on the toilet for about 2-3 hours before I went to work everyday and it was enough to sort of empty me for a while, but I also had to take them during the day as well.. I used to take 2 first theing, followed buy another one if they weren't starting tp work and often I had to take more in the afternoon. I remeber once at work and I was so hungry and I ate a dry cracker and with 5 minutes I had to rush to the loo again. I was told by so many people for the last decade that it's all in my head. But I agree that even when I was totally relaxed, having a day off work I would get it. Stress definitely makes it worse like if I'm worried about going to the dentist, but it isn't the cause. The diarrhea definitely came first and the stress second.I'm ok thanks just had a couple of good days, so things are better than they were. I do get some days without diarrhea now, whereas in the past I went through years of having it everyday. I am in a slight panic because my dad has just caught a tummy bug so and I always catch them, so I'm stressing about that now. Whenever I get a stomach bug it takes me weeks to calm down again. So fingers crossed I don't get that. Hope the Doctors goes well - most of the waiiting rooms have toilets if you need to go. xx

 

[cherrypie09]

same with me, if I get a tummy bug, it takes weeks for my bowel to settle down,

 

[peaches41]

Me too, in fact I think the first time all this started 2 1/2 years ago was due to a stomach bug.

 

[cherrypie09]

CW 2009I dont work and I am on benefits. Going to the doctor is going to be a waste of time, but I have to try to see if they will look at other things that may be making the Ibs-d worse, I am always bloated and full of wind and the noises and gurgling and popping noises and movement in the bowel sounds like a central heating system when there is air caught in the system.I have tried taking the Imodium at night and I still go with loose bms in the morning, I can take 3 a day and still have loose bms, it does not make sense, it would constipate most people for days.

 

[Kathleen M.]

People who have chronic diarrhea usually end up taking more Imodium than someone who has normal bowels with a mild GI illness.Some people take as many as 8-16 a day so 3 is really not an extreme amount. Spreading out the dose usually give more control than taking it all at once.

 

[cherrypie09]

I do spread them out through out the day, Its strange that I normally take 1 Imodium in the morning, but just lately have had to take 3 sometimes four and I have still had loose bms.Thanks Kathleen

 

[BQ]

No.. it's not really strange. IBS symptoms can wax & wane seemingly on a whim sometimes. You may just be flaring is all.

 

[clareuk]

Hi cw2009i did try taking immodiums at night but it never worked for me either. It was like I hadn't taken them at all and the morning was just as bad. So i have found that I have to be up and moving around when I take them, for it to work.At the moment I have a really good boss. Luckily when i took the job she was desperate for someone, so i told her all about it and I'm still there several years later. She is so understanding about it and I know how luck I am as i have had some awful bosses!!! Most of the year I'm on my own in a shop and if I have to go the toilet is always there. My previous job I was outside all the time and it was terrible getting to the toilet in time.. She knows if I'm late it's because I can't get off the toilet and I am so grateful for my boss. I've had to leave several jobs because the ibs was causing so many problems. I have had stages in my life with this where I really didn't know how I could carry on working with it all the time, especially when it first became very severe diarrhea all day. I had to work at the time for my family who were having real financial problems and needed my pay packetl. I couldn't find anyway of getting help benefits etc so i had to go and didn't have any choice. Thanks god things aren't as bad as that now and thank goodness I haven't got that dreadful boss who used to wait outside with her watch to see I wasn't late. I was mid 20's at the time and like I needed that on top of everything. I still hate her for all the extra stress that she added to the situation.

 

[BQ]

Perhaps if you took the imodium WITH meals so it is actually co located WITH food it might be more effective for you both? Something to try anyway....

 

[petra]

BQ-is there any evidence to suggest that imodium works better with food. My understanding has always been to take them after a bowel movement-well that is what is written on the instructions. There isn't any mention of taking them with food. I take them ritually so neither rule applies to me-I take them to slow down the gut an improve sphincter control.

 

[clareuk]

Thank BQ, but unfortunately for me that didn't work either, nor did spreading them out over the day. I think i found what works best for me by taking them as soon as I get out of bed. Many thanks for the advice though.

 

[boltonsbest]

My sympathies also go out to you. I have begun to forget what a day is like without pain (stomach, groin, chest etc from discomfort to agony). People DO NOT understand unless they are 'there'. I work but wish I didn't have to, Doctors don't care (I have had a doc actually laugh at me and tell me it's just a bit of tummy ache!).The most positive thing you can do is keep the hope alive that one day you will find the answer or (as has happened to others) it just goes away at some point in future. Until then keep fighting and I for one will think of you every time I am in 'trouble' if just to know that ur NOT alone however hard it is.Dave

 

[BQ]

Petra "evidence"?? No that is my experience. I only said it might be something to try... and I said that because taking them that way helped me. And I hoped that it may help you too. But please don't feel any obligation to try it. It was just a thought...

 

[Kathleen M.]

One of the problems with chronic diarrhea with IBS is it tends to come and go so often if you wait until you've had a bout or two of diarrhea and then take it, you get almost all the effect during the next several hours when you do not need it.Generally over the years of talking to people about how they use it here, I find most people either find it works for IBS better to either take it on a set schedule or to take it ahead of when the diarrhea will hit. Since many IBSers have diarrhea after meals taking it with or ahead of the meal means it is it in place when you need it rather than being effective 30 minutes after your diarrhea bout is over and hoping it lasts until the next one 6 hours later.But your mileage may vary and different people find different patterns of use work.However I find the "wait until you have diarrhea" thing is generally best only for those that have occasional acute bouts of diarrhea which is what they wrote those instruction for, and it seems a lot of IBSers do better to have the drug in place before they need it rather than trying to play catch up. But that is pretty common for most chronic illnesses. Just like every allergist I know says take the Benedryl or other antihistamine before going to the house with the cats because it is easier to get control when you aren't having symptoms than to try to suppress it once you are in a major sneezing fit or asthma attack. So I think it is a fairly common idea in medicine, not one that no one should try with anything. But again, your mileage may vary.In the clinical trials for Imodium with IBS-D every day they usually made people just take it on a schedule and found taking it often enough it was around all the time was better than once a day or occasional use.