Cannot do this anymore

Hello all, new here. I have had symptoms of IbS on and off for a few years. Used to have IBS C and then last year developed IBS D as well which to be honest i preferred the C which was bad enough. Last year I ended up in A and E after straining from IBS C caused me to haemorrage from my urethra.

I was given a colonoscopy, described as challenging by the Doc performing it, he took an hour to do, could not get down last part of colon. Noted I had excessive bowel looping and probably had fixed pelvic adhesions from previous gynao surgery including a total hysterectomy. Was given HRT to deal with the urethra problem and given a diagnosis of IBS, told everything was normal. Given Meberevine, didn't work, switched to Alverine Citrate, didn't work, now buy buscopan but have to double up on the dosage.

Now this year, my health has just gone into free fall. Almost everyday I have D, usually it is solid D if that makes any sense. The pain is horrific, I usually spend two hours in the bathroom just screaming and shaking with pain, literally unable to move.

The pain is at the very bottom of my stomach, not just cramps but contractions. I also have the most awful back and hip pain and after the cramps have stopped I have terrible soreness across my stomach and back and hip pain which makes it hard to walk.

I dread having a BM as I can wake up fine but the minute I have a BM that is a trigger. I usually get the D of an evening and morning. I always know when the d is about to start as my heart starts to race, like what happens when you are scared.

I tried Fodmap diet, gluten free, lacto free, eat virtually no dairy, have not ate bran or whole wheat products for over a year, have tried every probiotic, ate gluten free oats until they came out my ears, cut out fruit virtually and veg.

In the last 10 days I have lost 12IB in weight. I am literally terrified of food. I look at food and instantly feel scared and just see pain. Medical profession are uninterested, it's just IBS.

My diet for the last few weeks has been the same everyday. It is two bananas, three gluten free, allergy free grilled chicken nuggets and one nakd bar. ( google if you don't know what it is). I have 8 glasses of water and two cups of tea.

Despite this diet my D is worse than ever. How can I even produce so much when I am barely eating? My mental health has gone downhill as well. Since early this year because of this IbS I have barely been able to leave the house, spend all day between bed and bathroom.

I am now seriously considering I have only one option left. I have actively started making plans to stop the pain, I just cannot live like this anymore, I cannot even remember what it is like to be without pain. I just seem to be crying constantly and have told my one family member I have that he needs to start preparing for me not being here.

He just responds by saying there are people worse off and I need to try harder. I can't try anymore. Doctors say IbS doesn't kill you, it's not even an illness, but it is and it does.

I had mental health problems many years ago and have found that the medical profession are very dismissive of anyone with mental health issues presenting with a physical illness. I once had to have emergency gynao surgery because the words attention seeker were written on my notes and my health problem was dismissed.

I also have scars from self harm from my younger days more than 8 years ago. I get so tired of being forced to explain in hospital why I am scarred. I have even been refused medical treatment until I explain why I am scarred. I cannot afford to go private and my docs will not test for allergies or anything else. Colonoscopy is the standard and that is it. I even had to fight for that as it was initially refused.

I first had a sigmoidoscopy and that was utterly humiliating. The prep didn't work and the doc wrote on my notes it failed because I wasn't clean and hadn't prepped properly. They just didn't believe I had done everything I was told to, I even starved myself for a week to prepare.

Last year during my colonoscopy the nurse kept on and on asking intrusive questions about my scarring on my arms, not something i wanted to explain to stranger when I have a pipe in my rear.

I have been completely written off by the NHS in regard to my IBS, one doc told me to get a hobby to take my mind off it, bit hard to do when you seem to spend much of the day lying on a bathroom floor unable to move because of the pain.

Sorry to be so boring but I have no one else to talk to.

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11 Replies

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  • Hello, what you write I can empathise with. There is nothing terrible or wrong in what you write. Its about what is right for you, and no one else need contradict you. You are very brave to have written what you have - its takes guts to be open and honest. Thanks you for sharing.

    The joining of so called physical and so called mental feeling are I understand far from unusual. Unfortunately the medical world has a habit of separating physical and mental, but you one person, and the two a together as part of you.

    This is a very inadequate reply, but if you want I would be very happy to share further with you. No intention of trying to suggest what you should or should not do. You have the right to decide for yourself. Friends and family, may not understand but that is their problem, not yours.

    I say I can empathise, because I too suffer physical and mental distress - I sometimes call IBS 'irritable brain syndrome'. My diagnosis includes Depression and General Anxiety Disorder - parts of Complex Post Traumatic Stress Disorder C-PTSD. I have taken overdoses and suicide is a daily thought. If you will let me, I’d like to go on sharing with you - no pressure :)

    I've included my email address if you want to use that or we can share via this page. Your being brave has helped me.

    Thank you

    Steve

    manod@btinternet.com

  • Hi thomasina71, I am really sorry to hear you are feeling this way and the response you have received from your doctor, I believe sometimes in these situations it can be really helpful to talk to someone, the Samaritans helpline is available 24 hours, 7 days a week. Their uk number is 08457 90 90 90.

  • Hi Thomasina 7, So sorry to hear how bad you are feeling. I wouldn't dream of telling you what to do and in any case every IBS patient is different. many of us with the IBSc have these awful morning sessions and are afraid to go out in case of an accident, but we try to plan ahead and know where toilet stops are. The diets - I have tried so many and frankly they seem to make the problem worse for me and you end up with a restricted diet which is not good for you. So try to eat as normally as you can. You mentioned weight loss - what I am sure about, is that if you lose 10% or more of your normal body weight, then they will take notice of you so if the amount you have mentioned fits that category then tell your GP. You have had a rough time, but hang in there; there are a lot of us out here who do care about others with this awful problem. There are good days too you know.

  • I understand part of your story I have ibs A which is a combination of both. When I had my daughter 6 years ago my D went out of control and I was going 8 times a day I felt so down I went to the doc. I have ibs for 17 years but it was more manageable before. I had post natal depression but didn't seek help as I was scared. 7 years ago my doc put me on alverine, buscopan and loperamide and I have been on them daily ever since. When I look at how I felt then to now it's much better mentally but physically it's a daily battle and always will be. I went through a stage of not leaving the house as I was scared of being caught short so I asked my doc for counselling, I had cbt which did help a lot and I would recommend, mine was for anxiety and stress management. I also have adhesions and the pain you describe is largely because of these you can ask to have them sorted out but the irony is you have to have surgery to sort it which can cause adhesions but it's worth a try. I would suggest drinking only water, take a probiotic and multi vitamin every day and try and get meds. Don't give up if your structured it can be eased slightly but as you probably know stress does make it worse so as hard as it is try to relax. Try taking up exercise, yoga, meditation etc. they all help. You can't allow this to beat you, keep fighting it can get better. Do I still have bad days absolutely but I tell my self next day will be better. Hope it helps to know your not alone in this we all have to fight every day

  • Hi thomasina71 I am another IBS sufferer that can totally empathise with you.When you mentioned you have IBS D but your BM are solid that's not strange at all because I'm exactly the same,also morning and afternoon and each time I go the pain gets worse,so I really do understand you.Your post sounds just like I wrote it myself.I like you spend a lot of time crying,I haven't had a holiday in 6yrs but I believe I'm also spoiling my husbands life.I can't really help you myself because I'm struggling with the same problem without any results.But hang on in there and by being on this site you'll see how many people suffer.Dont give up if you come up with a miracle cure let us all know lol,( not funny I know ) BIG HUG X

  • I have IBS and coeliac disease and I'm a physio. I'm partly ashamed of being a healthcare professional because of the NHS process. I have changed my practice as a result of my experiences and I can asure you that private healthcare is no different. They just tell you the same things but over a longer appointment. What I hope you may try is some alternative therapies like physio as a lot of physios have acupuncture skills as well as manual therapy skills. These can help affect the nervous system as well as your movement. Some gentle exercise is the way that I found help ease my symptoms. If I look back now 10 years ago I was off work on long term sick, depressed with the whole situation and couldn't see a way forward. Now, I've changed career to being a physio and I've completed ironman events! I've also spent a lot of time over the last 3 years overcoming issues like previous self-harm, rape and numerous family deaths. All of this has helped as well as a lot of work by myself into diet, nutrition and finding what works best for me. I struggled finding the right support so I found what I was passionate about and used my own energy to support myself. It does take a long time and there are many answers I'm still searching for but things do improve. Kepe believing in yourself, find people who do support you and stick with them. If they don't then move on....it's hard but that counts for loved ones too. I got a divorce as a result of all of this. xx

  • Dear Thomasina, So sorry to hear of all the problems you're having at the moment - don't know where you live or whether you can afford it but the functional gut clinic (see website) in London offers I understand the best hope for difficult cases - I haven't been myself but have heard marvelous things of it and as I am waiting for treatment on the NHS having myself turned down the option of a colostomy I am hoping for positive help from NHs in future but if it doesnt materialise will try and get myself there. At present I am managing with difficulty with help from a wonderful nutritionist as well as taking Resolor on prescription, 2 VSL3 daily and Oxypowder and other things which I have to buy and also have regular colonics and which helps me get by though not I know a long term solution. Wishing you well

  • Hi I'm so sorry to hear that you are suffering. I can empathise with you as I too suffer from IBS and depression, and I know how low it can make you feel.

    I know how it feels to dread eating as you expect pain and trouble and is makes eating a chore and an effort.

    I want to you to know that things can get better, even if you can't see it at the moment. I made a conscious effort that my illnesses would not defeat me. It wasn't a quick process and it was a hard slog but I feel that I am more in control now. I have found that drinking buckets of water have helped, as has eating small meals regularly throughout the day. I have found that running and gardening have helped with my digestion as well as my mental health. I'm not saying these things will work for you, but its a case of trial and error to see what suits you.

    Don't let this rubbish illness define or beat you, I am living proof that you can get your life back, I still suffer but it is not on a daily basis as is was before, but just the occasional outbreak.

    Please try and find a sympathetic ear to listen, change doctors if you can, that can be the greatest help.

    GOOD LUCK

  • Hi Thomasina, please don't give up, I understand how you feel. If someone asks you if you're okay and you say you are suffering with IBS it's almost like 'oh, that again'!. I do have an understanding husband and family and have to say that I count myself as one of the lucky ones as I have rarely suffered with IBS D although, for the past year or so I have been to the toilet more frequently but luckily enough I work in an office so there is always a toilet nearby. What is hard for me is that I love walking and visit the Lake District every year but have a dilemma each time I go out by thinking whether I would make the walk without needing the toilet and have to say it's been a very near miss at times! What seems to have improved my IBS since the early days (I was diagnosed back in 1996 after having a Colonoscopy and Endoscopy) is taking Multibionta tablets made by Seven Seas (UK); I read an article quite a few years ago now in a magazine and the gentleman who wrote it said that they improved his IBS greatly so I have been taking them since then. They have also been rated in the past as being one of the best multi vitamins you can buy, there is another one but I can't remember what vitamins they are.

    Best of luck Thomasinsa and you are not on your own here.

  • I dont have ibs anymore but when I did I remember it was horrible. Ive it can turn into Crohns disease, maybe thats what you have.? But I remember being very depressed & had high anxiety.why? Because I didnt know what the F*** I had.! Which is what doctors dont understand! So insread of hearinge out they would focus on that, my depression & anxiety. This got me even more frustrated. I thought I was going to die & also had suicidal thoughts.they gave me zoloft "for the depression". The only reason I wAs depressed is because the doctors & I didnt know what the hell I had! To put short, after seing countlesss docs & even moving away to find help w the help of family. I gave up prayed & bit into a piece of garlic. Yup, garlic, idk why , I just did. & for the last 10 years its cured me. Im totally good. I eat it everyday w food just bite right in. I also did accupuncture , took 3 sessions & also helped me. A spiritual life I also got. A relationship with God. Thats the best part. I hope you find the peace, I hope you fight for it. DO NOT GIVE UP ! PRAY PRAY PRAY & then PRAY SOME MORE! god bless you & hope this finds you will.

  • Even tho this thread is one year old and u probably wont read this, i feel you....ive had fever of unknown origin and CFSfor almost 10 years from when i was 15, yep im 25 now. Yeah it is hard AS HELL to live with it. Like that wasnt enough, i got IBS when i was 20 just permanent intense bloating. I too then, at like 21, completely gave up on everything...stopped going out completely and was taking Seroxat. Those few years were actually really nice, but im older now and trying to get active but its SO HARD. Everywhere u look around there are peoplejumping around in their new cars with their girfliriends/boyfriends being happy thinking zero seconds about theirs health..they even destroy their health with ciggarettes, alcohol, and easy drugs all the time..

    So yeah, i feel you, life sucks for me too, i wish i was living alone somehwere now, having a job and hanging out with my friends all the time- but im not. I wish i could name someone that has worse life than me- but i cant from my POV even tho thats not true ofc.....all i can say your biggest partner in everything is time, cause it goes by, and it is shitty for us and even if good or bad times come, something will change and it might be good, even great, but idk anymore...im screwed nearly half of my life for what fking reason.......

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