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Discussion Starter · #1 ·
I'm not trying to sound negative but realistic I'm reaching a point with my IBS (5 yrs now) where no matter how hard I try to fight it everyday, change it, eat better, just better myself overall, I see no difference, no progress, nothing. I get to a point in my life where i just want to give up, I don't want to try anymore because nothing seems to change. I have better days than others but everyday its a battle, a war I never wanted to fight in but I got drafted and now my life is scarred forever! I just don't know what I want anymore. Life is complicated as is, and with IBS, life becomes more a challenged. I feel as if my back is always up against the wall, I have a handicap in every thing I do. So what am I suppose to do, put on a smile to the world and pretend nothing bothers me? Talk to someone (which ive done) and tell them how I'll be happy if I'm physically happy. I hate my body, i hate IBS and i hate going to the bathroom. I know im coming off as negative but im realistic, i am not going to life my one and only life crapping everyday for the rest of it. I dont understand how doctors cant figure us out. If there is an affect there is a cause.We are voodoo dolls and someone is playing a cruel curse upon us!!! Maybe in our next lives, we dont have asses to #### out of!
 

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I am about in the same boat you are in as far as finding something that completely takes my symptoms away.... and I have been dealing with this for in excess of 20 years.Technically I don't give up....ever. I hear your frustration and I understand though. We all have moments when we want a "normal" body. And it is ok to feel cheated a bit and wistful about things we may have had to miss.. or change or give up. That's ok. But I have found I make myself feel worse if I dwell on it too much.Look.... I don't pretend nothing bothers me.. I don't pretend "I'm Fine" but I don't curl up in a ball and wail about how terrible my life is everyday either. I have reached a level of acceptance that IBS is what I have and I have tried to be grateful that it isn't anything worse.I just do my best everyday. I just try to manage my symptoms and get the most I can out of life. Would my life be easier without IBS? You bet it would. But.. I have it and I have it severely. And I, at some point, just saw that to feel the best I can, I must just accept it.Trust me I have days when I feel disgusted and there are tears... I figure I am better off expressing those emotions rather than trying to swallow them... as I think that would make my symptoms worse. We all do what we gotta do and we all can do nothing but try our best.I DO hear you and I understand more than you know. But do yourself a favor... try not to overly dwell on it. It's a balance we strive for; a balance of feeling and expressing our reality with acceptance of it.((((((Hugs))))))BQ
 

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I am sorry to hear how badly you are doing. I went through that for 10 years before I luckily found a way out of it. I truly could have given up at any time; but I didn't and I have now been free of the curse for the same period of time I tried to deal with it. I am assuming you have D, from your posting. Have you tried Caltrate? Drop Linda a line. Hypnotism? Cookies will help you try that. Gut flora? Inflammation? NowLeap or the Seattle IBS Center can help you pin that down. Flavonoids? I can help you try them out. I am sorry, but there doesn't seem to be a single answer or a single test and your doctor is probably not going to pull something out, because (s)he has probably not been introduced to any of these kinds of treatments. My life for the last 10 years has been nothing but a blessing. I truly believe it is possible for most of us; but unless you give these treatments a try, none of them will have any effect.Know there is a future for you.Mark
 

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ThewallareclosingI know how you feel, beleive me I have suffered with IBS-D for 10 years, this year so bad, I just cant find anything that helps it, Ive tried most things that I can afford, money is non existant so cant afford to keep trying different things that dont work. Doctors and GIs are not much help, they just say live with it. I do try but it does get you down.
 

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ThewallsRclosing,I think I am in a similar position, i am 25 and have suffered for 7 yrs now,,, What was initially purely a physical problem is most definately now taxing me emotionally/mentally. There have been periods when i was feeling really angry about the whole thing and times when i would act out i had just lost all value for my life, or be so depressed i would just withdraw from everything. I dont know what the answer is. But i do find for me it helps if i just aim small, do the simple things i do like and not really think about the big picture.
 

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i try to focus on one day at a time but i'm going through a pretty bad patch at the moment. I'm in danger of losing my job through this illness and depression is starting to kick in.My GP is hopeless and just leaves it all up to the GI doc (who i see every 3 months). I'm due to see him again on tuesday and i feel sure i'm gonna break down in front of him. My only symptom at present is constant nausea to the point where i can hardly eat (just fruit and weetabix with the odd fortisip thrown in).I'm a slim lad anyway but i'm on the verge of becoming skeletal (5"10 and 58kg and falling!) through this horrible illness.Illness is what i call it quite simply because it makes me ill.I've had test after test and all have come back negative.
 

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Boy do I know how you feel! This illness is horrific, and I often refer to it as a "curse". I also get very dark thoughts as welland don't always feel my life is worth living if this is my life.Something in me just won't allow me to give up. I'm systematically trying everything I can hoping to one day hit the bull's eye.I even accidentally found something which helps me manage the pain and that has been a blessing.I have personally met people who have been completely cured of their IBS and had it REALLY bad for years on end. So even though this is probably the most difficult thing you'll ever have to deal with, never forget: there is hope.
 

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I ain't giving up tho! No way. Too many people on this site have found cures and relief and i'm determined to be one of them one day. And i will be...every day that passes is a day nearer to me finding peace from this affliction.I enjoy life too much and i have a girlfriend who supports me through thick and thin...and that's so important.
 

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I try to keep my chin up, and I try to work....but my reality is I have had IBS-D for over 30 years now.....and my symptoms are worse instead of better. I have lost almost every single job I've ever had due to this horrible IBS. I have recently applied for disability and am in the process of that right now.I'm trying to not give up, but I sure do get discouraged and frustrated.I sure can relate.....
 

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What I wouldn't give for my diarriah back.I had it for 30 years, and suddenly it changes to constant constipation. All the laxatives, enemas etc. have seemed to petered out on me in just the short time I've been this way (less then a year).I also have prostate problems, my prostate seems to be enlarged, and the backed up stool pushes on my prostate, and it's almost impossible to urinate most of the time. I don't know how I'm even surviving.I'm on medicade, have to live with parents, and drive a 165 miles to see a urologist.I've tried urinary drugs, like Rapaflow, but they just seemed to make the problem worse. And create bizzare side effects like more constipation, and reverse ejaculation, where the seman flow goes into the bladder rather then out the penis. The surgical procedures to correct the problem do the same thing.I probably need a colostomy for the backed up stool, and a urinary surgery for the prostate problem. I"m scared out of my mind, have no girl friend, no job no money.I have an appointment with my urologist in a few days, hopefully he will admit me to the hospital as an in patient. Not make me drive back and forth a 165 miles in the up coming cold weather.For now, what I do mostly all day is sit in a chair, and feel like dying. When I'm not talking to my mom about suicide. She keeps telling me there is hope, I don't really see any.
 

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I find it very hard to sleep. I doze off for a few minutes then wake up with a shock. That I'm back in reality which is a nightmare.The enlarged prostate, causes a dribble after I urinate, so I have to put some tolite paper in my pants to catch it. The big doses of laxative I take, while not giving me much stool. Causes me to have to constantly wipe my rear end. I should probably be in diapers. I tried some depends but they irritated my wildly sensitive skin.I can only wear certain clothes, or they make me itch and break out like crazy.I am wildy sensitive to noises, I have to put ear plugs in my ears all the time. And have some type of back ground sound going, just to be able to try and sit still.I am endlessly paranoid about any problems that may arise, and feel on the verge of a panic or heart attack most of the time. I Have sores all over my back, from all the laxatives.My quality of life is very poor, and I constantly think about suicide.
 

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My problem is..... my symptoms are worse, and I cannot hold down a job. I applied for soc. sec. disability but it takes a very long time.... I don't have any family left, everyone has passed away in my family, and I live alone with no one to help me..... I am scared I may become homeless due to not being able to hold down even a part time job because of my IBS..... You'd think in this dang country there'd be some kind of help out there. If my disability gets turned down again, I don't know what I will do..... I do have an attorney, but I'm beginning to wonder if he is really much help at all. My doctor is behind me 100% with the disability, but, well..... I really feel very hopeless at this point.I'm not givingup, but I just don't know what more to do any more.Oh gosh sirjohn.... have you tried disability? Talked to your doc about this in detail perhaps?
 

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Wall & Rest,I have both IBD and IBS and I've been where you are today. You may want to read the book I wrote about my experience of learning to live with all this it's titled, Living with IBD & IBS: A Personal Journey of Success. Everything I write about in the book helped me to get out of the crisis state I was in and if I were to write a follow-up book today, 10 years later, I'd have to add in a huge diet change - going gluten-free. I highly suggest you see your doctor and ask them to test you for Celiac disease. Even if the test comes back negative I suggest you try a gluten-free diet for a minimum of 1 month. I cannot tell you the changes it has made for me by going gluten free and adding Vit D (under a doctor's supervision). After taking IBD medications for 10 years, today for the first time I am off all IBD and IBS meds. I have 2 normal BMs per day and live a pretty normal life. I fully understand your frustation. I do. But I also learned a long time ago that even though IBD and IBS suck! they are not worth losing your life over. I also realized that doctors are people with an advanced degree. They are not gods, they are not magic makers, and they cannot and do not know everything about every illness. You have to try to take some control in your problem and your treatment. I've seen a lot of bad GI docs and a few good ones - a good one in my book is one who listens and tries to help without their only answer being to throw another prescription my way. I have changed my life drastically because of IBD and IBS and yes, on occassion, it still bums me out. But, this is my life and I'm not goint to let a pooping illness take me down. My dad has IBD and my mom has IBS and they both live a decent life despite it as well. You're in a rough patch right now and it's normal. Just don't give up, never give up because even though it's hard right now it can and does get better. I know, I've been there, and today my life is good. Yours will be too. Feel free to PM me if you want. I'm here for you if you ever need it.Hugs,Elizabeth
 

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I have tried to get help with being off work due to the ibs-d and the anxiety and depression, but i am told by the social that they think i am fit for work. I feel like giving up, I cant hold down a job either, I cant get out of the bathroom until after 10am in the mornings because of the D, and then some days it will be more and i take 11/2 imodium daily to try and help the D, but they just dont seem to help much. I have been tested for celiacs, had blood tests and biopsies, I dont eat gluten or wheat and have lactose free products.
 

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I admit I got really low and to the point where I had just had enough. I couldn't see a way out and didn't want to live my life like that anymore. I tried so many things and nothing worked. I always tried to keep positive but I just couldn't really face it anymore. I just tried one last thing and it was the right thing. I have gradually got better and better ever since. So please don't give up because you never know what is around the corner. I never thought things would improve and thought I was going to have those problems forever but they have. I still have a few problems but it is so much better than before. Just try to hang on in there and keep trying. I'm here if you need a chat with someone.ClaireHi Cherry pie,I had the same problem. It made me really mad that so many people could take time off sick and I wasn't even considered. I had to try and carry on with a full time job and I wasn't even considered. I really didn't know what to do, I couldn't get help from anywhere. Having diarrhea everyday all day is definitely a disability. I couldn't get off the toilet, barely managed to drive to work without s****ing myself, couldn't eat, couldn't do anything. I couldn't get a day off. I have since learnt that you need to ask the doctor if you want time off. Don't wait for them, tell them you need it!! There is also a form that you can fill in (you need to get it from a doctors surgery) and you can write yourself off sick for a week etc... I didn't know about any of that and I could have really done with that. You just need to go in and ask the receptionist. Hope that helps you.
 

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I dont work at the moment, I had to leave my job because of the ibs-d and the anxiety and depression, my doctor has signed me off and says i am unfit to work but its the social they say different, so its difficult to get money.
 

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I wish employers and the social security disability people recognized IBS for the awful disease that it is.When I had bad flare-ups at all my former jobs I had doctor's notes, yet I was let go anyway. Now, with my new job, I was late 45 minutes one morning (I have to be at work by 6:00 a.m., not easy with IBS-D), I explained to my boss that I was stranded in the bathroom at home, I made up time tho and stayed at work late, I even went to see the ER doc that day (I was dehydrated and dizzy), my boss still wrote me up, and she is now threatening to fire me.It's hard to stay positive....
 

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I haven't worked for years, I stay with my parents, my mother handles most of my affairs. She tells me that since I hadn't applied for disability within a certain amount of time from when I last worked I'm not eledgable for it.I tried gluten free for 3 days, but it seemed to make my constipation even worse. Does gluten free actually help everyone, or just a few people that are gluten intolerente?The lady at the health food store, insisted the diet wouldn't constipate me, and I would die if I didn't eat gluten free.
 

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I have lived with IBS-C for 13 years now and know exactly how you feel. It is both physically and emotionally taxing. I was able to manage my symptoms very well for a number of years, with modifications along the way as new issues arose. In the last 12 months, my symptoms have changed fairly dramatically and affected my quality of life very negatively. I was already in a low place with these new symptoms and how limiting they have been, but the icing on the cake came this last week. To begin with, someone who I thought was a close friend, become angry and very judgmental of me because I'm not just able to handle it all, 'suck it up' and never have a need to cancel plans because I've had a sudden onset of an episode. The end result has been that she decided she no longer wishes to be friends with me. The real icing though, came the same day as the friend incident, when I went in to see my gastro specialist. The nurse practitioner who I was seeing (she is a 'Physician extender' for my gastro specialist) came into the room, already angry with me because she thought I was late to my appointment, which I most definitely was not. I then endured an hour of her verbally abusing me which included her telling me how I "obviously have emotional problems" and that my IBS is a result of my emotional problems. She also repeatedly told me how I was 'hysterical' and she finally said she would be sending a letter to my therapist, psychiatrist and PCP, about this visit. I had started crying and was unable to stop and this constituted me being 'hysterical'. I know my crying came only because I was already upset about the friend and then here is this person who is supposed to be helping me and instead she is being just plain nasty to me. I truly wasn't hysterical and later I had to laugh because she just has no idea of what constitutes hysterical for me. I have clinical depression and yes I do have a history of being abused (mother and ex-husband from many years ago). However with the help of my therapist who I've been seeing for 8 years and my psychiatrist who manages my medications, I have been able to work through so much baggage and get the depression under control. I absolutely feel that my depression is linked to my IBS-C but only because of how the IBS has affected my life so negatively. In other words my depression is because of the IBS, instead of the IBS being because of the depression. I also am well aware of what symptoms are triggered by external events and what symptoms are completely physiological. But apparently not only am I 'hysterical' and 'emotionally distrubed', I am also stupid and don't understand IBS even though I've lived with it for all these years. Please don't give up though...........I know it is SO frustrating and especially when so many in the medical community do not take IBS as being a true disorder/syndrome/disease. Persistence pays off and if you can assemble a group of professionals who you like and trust, they can truly help your quality of life. But you will likely have to push and push and keep going back even when you feel like they think it's all in your head and you may even have to 'doctor shop' until you find medical professionals who you click with and are comfortable with. You will also have to do what they suggest even when you feel like it won't help and in order for them to truly help, you have to put yourself in that humiliating place of telling at least a pcp and specialist, all of your symptoms and the gory details. It is such a horrible subject to have to talk about! Also you have to understand that there is no cure for IBS and it will never go away completely. At best, you will be able to manage it and you will have to be pedantic about the things you must do in order to manage it. My little group of professionals that I trust completely consists of my pcp, therapist and psychiatrist. After last weeks episode, my pcp is researching a gastro specialist to send me to who will take things seriously, not verbally abuse me and really try to help me instead of telling me it's all in my head. With the help of my therapist and psychiatrist, I am formulating a plan in how to deal with the NP and her abusive and extremely unprofessional behaviour. I really hope that you can get things turned around, start to feel better and be able to enjoy life again. Don't forget there are people out there who can truly empathise with what you're going through.sameeg
 

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Discussion Starter · #20 ·
So last week before break I saw the doctor again, pretty much got a bit hasty with him. My CT scan showed that my whole colon is infected, which suggested ulcerative colitis. Then when he did a colonscopy the next day he saw nothing. He said he was dumbfounded. He wanted to run more test when I stopped him in mid conversation and told him im tired of being probed and test like a rat. He put me on an anti-depressant (nothing new there) and told me I have to start accepting and living with this disease. I can't cope, I need to go to school and be normal. Im so frustrated, im suffering in silence, no body understands and nobody can even tell im suffering. I just dont want to do it anymore, after 4 years of suffering its gone to far. Whatever it may be it needs to go away because its breaking me down. my self confidence is already at an all time low. Im just done, its enough, its too much energy everyday to fight it and see no progress...
 
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