Irritable Bowel Syndrome and Digestive Health Support Forum banner
1 - 16 of 16 Posts

·
Registered
Joined
·
14 Posts
Discussion Starter · #1 ·
I've had IBS-D for seven years now but was only diagnosed about two years ago. Like a lot of people, I was too embarrassed to tell my doctor or my mom what was going on. I would just say "I'm sick to my stomach." Recently, my sister started experiencing similar symptoms (though it turned out not to be IBS), and I finally had the courage to tell my mother and doctor just how bad it really is. It's only gotten worse in the last three years, and unfortunately, my mom is extremely reluctant to admit the severity of it, how I can't just 'tough it out' on days when it flares up, and that it's bad enough that I'm pretty much disabled. I'm currently in my senior year of high school; the only reason they haven't kicked me out for the number of absences I have is I manage to keep my grades up. I force myself through the day despite the pain just so I don't upset my mom by having to come home/stay home on a regular basis. I'm even on an altered schedule- I take one course online and have one free period- that allows me to go home early every day (I don't have my license yet, so my mom has to pick me up). I've still missed 25+ days of school, and we're hardly into the second semester.My IBS is outright disabling- chronic gastro upset and pain so bad it almost knocks me over several times a week. I don't know when I wake up if I'm going to have a flare up at 11AM, be fine all day, if the pain I'm having now is going to go away, get worse, etc. I have symptoms nearly every day and severe symptoms at least twice a week, and usually more, that keeps me out of commission for three hours or more. During my time of the month, I'm usually unable to function most of the week- that's after the stuff I'm on to keep the normal PMS symptoms at bay. Nothing my doctor has tried seems to help more than to curb the worst of it (most days), and from what my new specialist has said, it's not too promising. My diet feels like a square dance, I meditate, etc. and even though I can manage my symptoms a lot more than I used to be able to, it's still severe.My problem is thus: my bouts of pain are so erratic, unpredictable, and happen so often that I cannot get a typical job. I could get very sick, very suddenly in the middle of a shift and be out of commission for several hours and be calling in unable to come God knows how many times a month. So, what do I do about a job, an income? My dad died of leukemia last year and most of the household funds came through him. It would really take a load of stress off my mom if we had money coming in from not only her (when school is over and she can) but from me, and I was able to pay for some of my own things.The only job situation that is realistic right now, with the severity of my symptoms, is a situation where I can work from home. I don't know the first thing about that- what I would do, how I could get a job, etc. I plan on taking a year off before I go to college to take extra art classes before applying to the art school I desperately want to attend (to bolster my chances of getting in, among other things), and I really don't want to be a financial burdon on my mom during that time.Any advise? This has really been stressing me out lately (I'm up at 5AM for the fifth night in a row, unable to sleep from anxiety), and as I said before, my mom refuses to talk about it. I don't know what to do or who to ask for help.
 

·
Registered
Joined
·
4 Posts
HiOn the topic of your mother asking you to 'tough it out', i know exactly where you are coming from. When having some tests last year, my gut came out all clear, and so my Dad then proclaimed it to 'all be in my head'.I've since confronted my Dad about it, and told him that when im not well, 'IM NOT WELL', and it's not all in my head. Maybe you should sit down and tell your Mum the same kind of thing. Just a suggestion, but good to speak to you a young person in the UK with the same thing...Take Care
 

·
Registered
Joined
·
121 Posts
Hey,Are you from the UK? If not then some of this info may not apply:From the sound of it, you are going through a rather tought time. Firstly what medications have you tried?Some anti-diahorreals that can help:You likely can get these on perscription for free in most cases in the UK:.Loperamide (Immodium.Co-Phenotrope (Lomotil).Codeine PhosphateIf that does not work there are more novel options you can ask about:. Amitryptyline (This anti-depressant sometimes has a good effect on the brain-gut axis that affects IBS). Ondansetron (Highly similar to Lotronex thats avaliable in the US, not IBS focused but its really helped some people supress their condition. You will only be able to get it from a consultant as its not licensed for IBS use, it also costs a ton for the NHS to perscribe. This is the real reason GP's won't Rx it
)As for the work situation; I'm not really sure what to advise until wether you have used medication to control the situation.)Given you age, you might be eligible for some limited state support. I'd recommend looking into:. Incapacity Benefit (Incapacity for youths). Income support. Disability Living alowance (DLA)These sites should have some benefits info you can use:www.adviceguide.org.ukwww.direct.gov.ukIf you can give me more info on medical treatments you have tried, I can try to help you further.Best Regards,mr_colt
 

·
Registered
Joined
·
14 Posts
Discussion Starter · #4 ·
quote:Originally posted by mr_colt:Hey,Are you from the UK?
Unfortunately, no. I'm in the states. Thanks for the info, though.I can't remember off the top of my head what exactly I've been on (other than Levbid because we tried that out and it didn't work just a few months ago). Anti-diahorreals don't seem to help, either.
 

·
Registered
Joined
·
14 Posts
Discussion Starter · #5 ·
quote:Originally posted by UKStew:Maybe you should sit down and tell your Mum the same kind of thing.
It was a huge relief for me to find out I wasn't alone, too. Not only does it solidify for you that yes, something is actually wrong with you, but it made it so I had something to point at for my mom and say 'look, it's not just me!' I've been trying to get her to sit down and talk about it for five months now. It tends to go nowhere or she avoids the subject entirely.
 

·
Registered
Joined
·
23,983 Posts
Sit down and have your folks read this carefully.http://hopkins-gi.nts.jhu.edu/pages/latin/...se=43&lang_id=1IBS is treatable for most IBSers and you are also still young and they are making some progress on it for sure.Learning is very very important and there is lots to try for IBS. Then if you find something that helps get a part time job first. This may even make you feel better, which in trun might help the pain and IBS. Also work can be distracting and hence help IBS. Not that its easy though, but a lot of people with very bad IBS work still.Try to systematicall try things and give them time to help. Don't try to many things at once.Have you ever kept a food and stressors diary?
 

·
Registered
Joined
·
23,983 Posts
PS it will be hard to get a job, until you find some ways to get the IBS under better control. The frustration of and worry of a job, will also make IBS worse and add to everything. Its partly a catch 22.
 

·
Registered
Joined
·
4,570 Posts
Your symptoms sound a lot like many young people I speak with at high school and college age - you may want to look into clinical hypnotherapy as an adjunct to your meds, etc. I found that my IBS was severe no matter what I ate, and like you, I was nearly housebound until I did this method. It works extremely well with young people - We had one girl who missed out on two years of high school with IBS and used this program and was free of it and returned to school with no problems . Doesnt work for everyone, but it could be a possible solution for you.Look at the links below and also www.ibscds.com and you can also call the toll-free number and someone will get back to you and speak with you if you wish.Anyway, all the best to you, no matter what you do - I know firsthand how hard it is to have IBS as a young person... (I am a mom!)Take care.
 

·
Registered
Joined
·
65 Posts
hey,im sorry to hear aboutyour dad and your troubles. i justwanted to let you know that im also seventeen, a senior and planning to attend college for art! we're very similar you and i
anywho..i dont know what to do about the job thing either, so im holding off for now, though i realize that the increased pressure in your situation puts jobs at a higher level of importance. um as for me...i get by using probiotics( that activia yogurt andthis stuff from costco called "digestive advantage"). i also try not to eat too many fatty or greasy foods,or a lot of dairy(im still toying with that though, i cant tell if it bothers me ornot) also i stopped drinking caffiene and carbonated drinks b/c they truly upset my system. i also use peppermint oil and drink plenty of water and peppermint tea. i mean that's just what works for me, and it has made things more manageable for me, with school and all. so idk,you can try some of these if you like. im also looking into mediation and hypnotherapy, but i havent tried them yet. hope everything works out for you. message me if you want
 

·
Registered
Joined
·
14 Posts
Discussion Starter · #10 ·
I have kept a food and stressers diary; the problem is, I know what will most likely irritate it, but they aren't my biggest problem nor the most common. It's the sudden, random pains that are making my life the most difficult. I have a pretty big list of things I know will help during a bout, but they don't work all the time.Marilyn, thanks for the lead on hypnotherapy. I've looked into it before, but I'll look more carefully now that my symptoms are getting worse.
 

·
Registered
Joined
·
121 Posts
If you are in the USA and you have comprehensive perscription health insurance, can afford $250 (self-pay) approx per month or can get some Medicare/Medicaid:You might try to get Lotronex, since anti-diahorreals have failed in your case I think a Lotronex doctor would Rx it for you. Lotronex is under a restricted distribution program, you need to see a doctor enrolled in their program to receive it (or get it from Canada.)I would advise you to read up on it: The manufactuer (GSK) has made a website for it: www.lotronex.comIt's helped a lot of people on this board to get their life back. I'm sure someone can advise you of a lotronex doctor in your area if you decide to persue it further.Best Regards,mr_colt
 

·
Registered
Joined
·
14 Posts
Discussion Starter · #12 ·
I'm not willing to take Lotronex because of the risk of ischemic colitis. I would rather find other ways to manage my symptoms, despite the quality of life issues, as I tend to be susceptable to medication side effects (for whatever reason).
 

·
Registered
Joined
·
80 Posts
I was a little lucky in that I made it to age 21 before symptoms set in. Im 29 now and not much of a future at the moment.Im at this time trying to get on disability. A lawyer has accepted my case which is a decent sign as he wont get paid if I dont win my case.Im still pretty sure that I wont win my case. Sometimes it seems like my own doctor doesnt understand me when I tell him the pain is dibilitating and disabling.One can only hope for the best. I am not hoping to be on it for the rest of my life but it sure would help right now. Especially the medicare.
 

·
Registered
Joined
·
9 Posts
hey, i was 17 when i got diagnosed with IBS. I knwo what it feels like when the parents don't understand. My mom is understanding because she herself has some stomach issues of her own. But, my dad is constantly teasing me and saying "thats mental-its all in your head" I know it's hard to deal with it, considering that they should be the ones more understanding about it. Don't let it bring you down though.
 
1 - 16 of 16 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top