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[lakegirl815]

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Hello everyone-I've been dealing w/ severe IBS for almost 25yrs. Its been a rollercoaster the whole way. I never know what my day will be like or bring. Since 1998 I have only been able to work part time hours due to the pain and exhaustion being so disabling. Since 2008 it has gotten worse and now I am not working at all. I have been very blessed to have a supportive family financially, but that has certainly put a strain on our relationships. I have recently applied for disability and was just denied. I seeked out the help of a disability lawyer, yet he feels that I do not have a good case. My question is...has or is anyone out there gone through the same? Is anyone not able to work longterm? Its humbling to have to discuss your life on such detail w/ complete strangers. You open up about how disabling your disorder is and how drastically it has affected your day to day life, and then they tell you that you don't have a disability and they don't see why you are unable to support yourself. Believe me- if I could have a full time career again I WOULD! I miss it terribly. I feel like such a slug. My day is spent going back and forth to bed all day long because I am in such pain/discomfort. I spent years going to the best treatment facilities and doctors, tried every elimination diet out there, worked with nutririonists, doctors and alternative health providers over the years all in search of some help. For the last 10 yrs I just go to my primary for maintenance care since I've been through everything imaginable. They tell me I am doing all that I can do. I use a mild muscle reliever when i eat as this has been the only med that helps me about 75% of the time. Helps take the edge off the pain a litttle. I'm tired of fighting this, I"m tired of people not understanding, I'm tired of putting a brave face on and acting like nothing is wrong just so I can have some normalcy in my life. Lately I cannot even manage that...and I've become more of a hermit again. Even though my family tries to understand and be supportive, they don't get it and always question me as to WHY I can't work or can't do something around the house. Its exhausting.Looking for some inspiration from others out there going through the same? Help.

[Diana63]

I understand exactly how you are feeling!I've had severe ibs for many many years also and its ruined my life.I do manage, just,with a very supportive family who totally understand how ill i am,they can see it!I had to give work up 13years ago and like yourself if i could be working again i would but its just not possible!I've also tried absolutely everything there is to out there but to no avail,although i do not give up hope and try to keep looking and hoping to find some sort of help to ease the suffering,so please dont give up!!As you say it is very tiring to the point of exhaustion to keep on going and get through each day,but we must and not let this condition just wipe us out although that is how you can feel!I try to take each day at a time and hope upon hope that one day i'll have a good day.I have a sense of humour and good support,which i know i'm lucky to have and carry on as best as i can.Please know that your not alone and i know how your feeling.So sorry i dont have any answers for you.Take care of yourself.

[katiebabe]

Omg I've just read your story and I can relate exactly to how you feel!!Unlike yourself I have had this for one year 'I'm 24'. I got it from a stomach bug.Everyday like you I am sore- uncomfortable-sharp pains-dull pains- trapped wind-toilet issues etc etc. Just doing everyday things is so difficult and working is sooo difficult. I am only able to work 4hours first thing on a morning few times a week.Do you find you are worse as the day goes on?I hav exhausted all that's out there in just one year! The gear of being like this for the rest of my life petrifies me. I really do feel for you.If you want to chat my email is katiedoubleyou@hotmail.co.ukIt makes things a little easier when you know others are going through it too. As supportive as family are they will never understand how we feel.Kate xx

[katiebabe]

Fear*

[katiebabe]

More to the point of your post- I think the most frustrating thing with this disorder 'when its severe like ours' is that we have absolutly no proof as to what we feel and go through each day. Only our family can see how poorly we are but they will never understand properly.No it is not fair, not for one second that we can't get help, this is a bloody diability and we shudnt have to proof ourselves to anyone. I see the way my friends look at me, they don't understand- I often think they don't believe me or think I'm being a drama queen. The fact is they never will understand.Why doesn't one test show our bowels not working properly I just don't understand any of it.Xx

[katiebabe]

Ella- post infectious ibs is usually caused after an infection ie -bad virus- food poisoning. Its all to do with the nerves and cells being damaged/ changing due to the initial infection.If your symptoms arrivied like straight afterwards like mine that you've probably got post infectious ibs. Look it up I haven't explained in great detailKate xx

[Diana63]

Kate..My family can see how ill i am on a daily basis,especially my husband,whom i dont know where i'd be without.I lean on him for everything and he is my 'rock'.He's seen me at my lowest and just by being there helps me to try and cope as best i can although as we all know that is not easy.He's a great listener also but only wishes he could ease my suffering.I do know what you mean by saying family will never understand,they do not know how we can be feeling or all the pain we have but for me just them being there helps me,but for someone else maybe it does not.I'm thankful they are just there!Life is not easy!

[katiebabe]

Hi dianaI am not for one second saying that having a supportive family around you does not help. Of course it helps, family is my number one and I wudnt have gotten through the last year without them.All I meant was that as much as 'I' want them to feel what I feel they can't so they don't know what we are feeling. Then again we may all be feeling different symptoms and different levels of pain anyways so you can't really compare your personal symptoms with anyone elses. The whole thing has put a huge strain on me and my partners relationship as I can't help but moan and cry too often than enough 'daily'over my pain. He feels totally helpless and it brings him down too which I don't want to see happen. Of corse life is not easy- nothing is ever easy, you just take everything being okay for granted until something like this or any other health issue arises Xx

[indianangel6996]

I know where you are comming from i have had IBS D sine 2003 and some days are better than others i at least work a job now that i can usually make it to the bathroom if and when needed but i generally am out sick at least 2-6 days a month when i spoke with my gen practioner about disability here in the USA she looked at me and said that it wasnt likely that i would qualify since the last flare up 2 weeks ago i have been in pain and just manage to get through the night (i work the night shift at a group home) so unless so not much luck sure wish the powers that be that decide disability cases would like our lives for one week and let them see what it is like my family is very supportive thank the lord

[Diana63]

Kate..I completely understand what you are saying.My husband feels helpless also and i can see the worry and concern on his face,seeing me so ill.I am very lucky to have a lot of love and laughter in my life although being healthy would be a dream come true not just for me but for so many of us.Always hoping for a miracle!!Take care.x

[lakegirl815]

I understand exactly how you are feeling!I've had severe ibs for many many years also and its ruined my life.I do manage, just,with a very supportive family who totally understand how ill i am,they can see it!I had to give work up 13years ago and like yourself if i could be working again i would but its just not possible!I've also tried absolutely everything there is to out there but to no avail,although i do not give up hope and try to keep looking and hoping to find some sort of help to ease the suffering,so please dont give up!!As you say it is very tiring to the point of exhaustion to keep on going and get through each day,but we must and not let this condition just wipe us out although that is how you can feel!I try to take each day at a time and hope upon hope that one day i'll have a good day.I have a sense of humour and good support,which i know i'm lucky to have and carry on as best as i can.Please know that your not alone and i know how your feeling.So sorry i dont have any answers for you.Take care of yourself.

Thank you Diane- I appreciate your kind words of inspiration. As you can tell, I was having a bad day when I wrote this. It had been a week of nonstop intense pain with no break and I was crumbling. Finally have gotten a little edge off the pain the last 2 days- thankGOD. Nice to hear that someone else out there is in the same situation. Always helps to know you're not alone. People look at me and say "well- geeze she looks just fine". I gotten so good at hiding my pain fromt those around me. Sometimes that's a good coping device for me, and other times not so much. I'd don't share my issue with most people as they treat you differently and i want as much normalcy in my life as possible. People don't realize how physically and emotionally exhausting it is to deal w/ intense pain 24/7 is. So when someone complains of a small problem, I usually brush them off. So bad I know. Well anyhow- I wish you all the best as well. Thank you again!!!

[lakegirl815]

Omg I've just read your story and I can relate exactly to how you feel!!Unlike yourself I have had this for one year 'I'm 24'. I got it from a stomach bug.Everyday like you I am sore- uncomfortable-sharp pains-dull pains- trapped wind-toilet issues etc etc. Just doing everyday things is so difficult and working is sooo difficult. I am only able to work 4hours first thing on a morning few times a week.Do you find you are worse as the day goes on?I hav exhausted all that's out there in just one year! The gear of being like this for the rest of my life petrifies me. I really do feel for you.If you want to chat my email is katiedoubleyou@hotmail.co.ukIt makes things a little easier when you know others are going through it too. As supportive as family are they will never understand how we feel.Kate xx

Hi Kate- thank you for your post. I was 18 when my IBS first started so I understand how devastating it can be at such a young age. At that time, my IBS lasted about 7yrs and then subsides greatly enough that I was able to have a great career for about 7-8yrs before it came back with a vengence. Educate yourself on everything to do w/ IBS and try everything you can. Some things work for one, but not another. Right now I'm trying Fennel tea which i had never tried before and I have noticed a little change for the good. The taste- you have to get used to, but now I enjoy it. We are all different in ref. to what works for each of us. You have to be your own advocate. I wish you all the best Health. Same goes to you....reach out if you need to!

[lakegirl815]

More to the point of your post- I think the most frustrating thing with this disorder 'when its severe like ours' is that we have absolutly no proof as to what we feel and go through each day. Only our family can see how poorly we are but they will never understand properly.No it is not fair, not for one second that we can't get help, this is a bloody diability and we shudnt have to proof ourselves to anyone. I see the way my friends look at me, they don't understand- I often think they don't believe me or think I'm being a drama queen. The fact is they never will understand.Why doesn't one test show our bowels not working properly I just don't understand any of it.Xx

I hear you. The whole thought of applying for "disability" really disgusts me and makes me feel like a slug. But then I have to be realistic of my situation and I finally got tired of trying so hard to please everyone and myself. I come from a family of work-horses and overachievers, so you can imagine how I feel around them. No one understands. My mother has been my pillar of strength over the years, but she still doesn't completly get it. She is always pushing me to get a job, but how many times can I express that I just plainly cannot do it anymore.For me... my pain is the worst first thing after waking for 3-4hrs, then reduces slightly and then by 1-3pm I'm down for the count again. The rest of the day/evening is up and down. I know automatically 2wks out of the month I am going to be much worse due to hormonal changes due to my cycle. Sometimes its longer.

[lakegirl815]

I relate to all of your comments so much> i'm 19 and have been sick since I was 15.i'm going through a really rough patch right now...i don't think i can do this for the rest of my life. my dad doesn't even believe that i have anything really wrong with me...it's just so hard. i developed symptoms after the flu,I didn't know that could somehow be a cause?

Ella- thanks for sharing. I know its a tough ride. I was daignosed at your age and believe me, my dad was just like yours. He gave me more stress than my IBs- well not really.lol. We fought and struggled for years and years. I took him to one of my support group meetings w/ me and also to my pyschotherapist appts as well. All in hopes he would "get it" It would help initially, then he would start all over again w/ me. I feel your pain. He was a very successful man, and just never understood what I was going through. We were different people at opposite sides of the pole per say. Try to educate him, that's the only advice I would have.You may not deal w/ this your whole life. IBS is so fickle and you just never know. Educated yourself...try Biofeedback, Hypnotherapy/Guided Relaxation tapes and find the right doctor! the right combination of drugs. You need a good pain killer/muscle relaxer if all other IBS meds don't work and def. a anti-depressant for this rollercoaster ride of IBS. Wishing you all the best.

[lakegirl815]

Kate..I completely understand what you are saying.My husband feels helpless also and i can see the worry and concern on his face,seeing me so ill.I am very lucky to have a lot of love and laughter in my life although being healthy would be a dream come true not just for me but for so many of us.Always hoping for a miracle!!Take care.x

Many of us can relate to how it affects our relationships w/ our loved ones. Hey I always joke that I'll be the first in line when they come up w/ "stomache and intestine" transplants. Really! lol