# Open Letter to Young Adult IBS Sufferers



## GailSusan (Dec 23, 2000)

I'm not one of you as I'm pushing 50, but thought I'd share what I wish I knew about IBS when I started having GI troubles years ago. Maybe it will be of help, maybe not.First of all, it's very discouraging to have GI troubles at a young age. I had the whole GI series and every other procedure possible in the late 1960's. (They didn't have colonoscopies in those days.) I understand what you are going through. It's hard to feel young and carefree like your friends.Second, be very careful about getting GI infections as they can worsen your IBS. My IBS got much worse after a trip to Mexico where I picked up a parasitic infection and then even worse later when I got food poisoning.Third, try the hypnotherapy tapes. I see that Spliffy has posted a link to Mike's tapes in the first post on this forum. It may or may not work for you, but it's worth a try because of the close connection between the gut and your central nervous system. I'd get the CD-ROM version, if I had to do it over again as I wouldn't have to rewind the tapes.Fourth, there are some new IBS drugs coming on the market. There may be a range of medicinal options to help you during your prime adult years that weren't available to help me. In the U.S. there is now Lonotrex for those with diahrrea predominent IBS and Zelnorm for those with constipation predominant IBS. If the current medications don't help you, don't lose hope as there are a number of new drugs in the pipeline to treat IBS at a number of pharmaceutical companies.Fifth, take your IBS into account in making your life and career plans. I pretended I was fine and didn't have any health problems. I embarked on a fast-track career with global travel. The stress of that and trying to support an upper middle class life style almost did me in. If I had it to do over I'd try to ensure that I didn't put myself in situations that were that stressful right from the start and have more balance in my life. I'd also save as much money as I could in case I got really disabled by this or any other illness or lost my job. I did save money, but when you are young you never think times will get tough, you think things will keep getting better. I wasn't prepared for a divorce, three operations, the stock market dip, and the loss of my job all in the same year. My nest egg got wiped out. It happens. Prepare for the worst and hope for the best.Well, that's about it. Don't want to bore you and I've run out of my store of accumulated wisdom anyways. Best of luck to you.


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## Nikki (Jul 11, 2000)

Thanks Gailsusan! Its always nice to have input from members that wouldn't normally post on this forum! Nice words of wisdom there! There are loads of avenues available to us to help treat out IBS- including Lotronex and Zelnorm. See the main IBS forum for more info as there is always things being posted on there. As for hypnotherapy. I know i always harp on about it, but it really might be worth a try for many of you! It might seem like a long shot, thats what i thought also, but it really does work. If you want more info then post any questions here or PM me, Eric or Mike.Don't give up hope yet!Spliffy


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## WaveyR (Jul 22, 2002)

Thanks GailSusan, everything you said seems like sound advice to me.Its good to get posts like this in Young Adults, maybe help a few more people. I've found that long time sufferers tend to have better advice on how to live with IBS - something most of us could do with.Wavey


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## GailSusan (Dec 23, 2000)

Thanks for the kind words, Spliffy and Wavey. Glad to help if I can. Took me a while to figure out what works and what doesn't with my body, but there's lots of good advice on the BB for how to feel the best that you can while living with IBS.


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## slammjamminlammy (Sep 10, 2001)

I second GailSusan's comment about GI infections. My IBS became much worse after a bout with Salmonella a few years back (in fact, that is when I joined the board) Just my two cents.


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## eric (Jul 8, 1999)

Thats a great and thoughtful post GailSusan.







I just want to say that gi infections in some bring about IBS and they are tarting to learn those connections.I also think as a young adult with IBS, unlike Gail and I (I am forty two) and other older people who have had this a long time, younger people can have a little more hope then us in treatments and IBS information, as they have learned more about it and hopefully someday they might provide some major answers to it.Its very frustrating when your young though for sure.I would also add learn all you can about it as that can be a big help and try to find a good doctor that will take time to talk to you about it.


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## GailSusan (Dec 23, 2000)

Eric, If I could just build on your thoughts. I went to 4-6 different GI docs before I found one that was actually able to help me. Don't give up.


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## Nikki (Jul 11, 2000)

I have been to several docs before i was finally believed. I still have problems trying to explain to my doc that it is REAL!The only way i have managed to gain any stabillity was through this board and discovering the hypno tapes (thanks to you Eric and Mike).Its well worth taking a looksy over in the hypno forum. You might be pleasently surprised!


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## Jules1199 (Nov 12, 2002)

I feel really really lucky to be i nthe age we are. I was IBS- c diagnosed last April by hte first GI I saw. He only did two tests on me. i ma a very healthy, active 22 year old. I read horror stories on these boards all the time and feel lucky b/c I am sure if this had happened to me 10 yrs ago I would be one of them. Since I've been diagnosed, I've been put on miralax, zelnorm and have become a vegetarian. I have days when I wouldn't know I had IBS. Thanx to all this fast-track technology, I am lucky enough to have not experienced the horrifics of IBS. Reading posts like the first make me realize how lucky I am. Thanks for reminding me.-Julie


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## GailSusan (Dec 23, 2000)

Julie, It's so true. Even a little over a year ago, I was pretty miserable (before I got the Zelnorm). People think colonoscopies are the worst thing, but try drinking a pint of cement heavy barium liquid so they can do an upper and lower series of GI X-rays -- awful. Now they can do a CT scan in seconds and get much more precise results.


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## Nikki (Jul 11, 2000)

Makes you wonder why they put us through such awful things!


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## Vicky Foster (Sep 15, 2002)

I just wanted to say thanks to GailSusan - it was a really thoughtful open letter.When i first read it, i guess i felt a little discouraged about the career thing - not because i want to be a high flyer, but because i'm a stuborn moo and hate having to admit that with IBS compromise is a way of life xI just feel thankful that i seem to have a talent, which will hopefully enable me to be able to work hard and be satisfied, but in environments where i can manage this disorder. (i'm an aspiring artist making myself learn specific skills like jewellery so that i will somehow always be able to earn just enough to keep the wolf from the door).I sure as hell am going to try and save whenever i can!I now realise this isn't about defeat or being pesimistic, it's about being honest and admitting that i do have a 'thing' that wont just disappear but i can still have alife...it'll just be a different life to perhaps what i've been brought up to expect.good luck with everything, and thankyou for your care xXx


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## GailSusan (Dec 23, 2000)

Sparkle, Yes, I worried about being so honest about the impact of IBS on my career as I didn't want to dampen anyone's dreams. However, success can be measured in so many ways. As long as you can make your own schedule, it is easier to manage IBS and your career goals. As you say, it's just taking reality into account.However I was struck by what you said, which seemed to equate pursuing your creative goals with having less money. That's what society wants you to believe, however, it's been my experience that people who choose a non-traditional route for their careers don't necessarily struggle more economically. In fact, a case can be made that lawyers, doctors and other white-collar professionals are expected to live a certain lifestyle and their earnings can get absorbed by their lifestyle to the point where they have very little saved. Those who choose a non-traditional route, don't have to live in the "right neighborhood" or drive a certain type of car. The difference between what you make and what you spend is what matters. If material things don't mean that much to you, you'd be surprised how much you can put aside for a rainy day. Also, some people who follow their artistic dreams actually make much more money than wage slaves, so don't automatically equate creative work with little money or it could be a self-fulfilling prophecy. Hope for the best and plan for the worst. Thank you for your honesty in expressing your first reaction to what I had to say and then your subsequent thoughts when you mulled it over. Best of luck to you on your creative pursuits.


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## Susan Purry (Nov 6, 2001)

GailSusan, thanks for posting. Your fifth point really struck home with me, a little because of the IBS, but mostly because of the relapsing/remitting M.E/CFS. I rail against not being able to fulfil my career aspirations because of my health, but I guess I'm going to have to accept it _and work around it_. Your point about saving money incase of disability is so important. When we're healthy we never think that chronic ill-health and disability is something that will happen to us (it's almost a dirty word for some people!), but if we can, it's a good idea to put money by just incase. Although I will say, that in the UK if you have a lot of money put by (over ï¿½3,000) and you're unable to work and have to claim Income Support you won't get it until you've used up some of your savings. Catch 22 huh!







Anyway, thanks for posting GailSusan.


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## GailSusan (Dec 23, 2000)

Susan, It may be easier to go on disability in the UK, but here in the US I couldn't get disability for my IBS even though I was housebound and unable to work. If it weren't for the fact that I had saved up a large amount of money and had a really good line of credit, I would have gone bankrupt, lost my house, and because I don't have children, I cannot collect welfare. Oh yes, I went through a divorce at that same time and had to fork over a six figure settlement to my ex-husband to get out of the marriage. The judge said he had never heard of IBS and therefore didn't consider it to be a disability. I've now gone through all my savings and am $50,000 in debt on my credit cards (which I used for groceries and other essentials), but I was able to get an IBS medicine that worked for me and I'm now earning money again. I still have my house and plan to climb out of debt. I don't want to scare anybody, but I had always thought I could earn a good income as I have my Ph.D. from an Ivy League college and was working in a lucrative field. Thank God I'm thrifty by nature and never lived the lifestyle that my income could have afforded me. Life just sometimes takes unexpected turns. I hear what you are saying about the government taking your money if you go on disability, but if that's the case, save up the cash and don't put it in the bank -- hide it somewhere.Good luck to you, Susan.


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## Nikki (Jul 11, 2000)

I am pretty determined that i will not let my IBS chose what career path i choose. Ultimately, its my choice, not my bodies. ALthough, i am aware that i might have to make allowances, like flexable hours or part time work. I will still DO what i want. Maybe not a food taster, thats all.Its just awful in this country for benefits. Its the same with students loans.


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## GailSusan (Dec 23, 2000)

Spliff, What career are you thinking of at the moment? I know you have a passion around music. Are you thinking of something involved with music?


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## Nikki (Jul 11, 2000)

Music therapy possibly. Or maybe something else related to music. NOt sure yet to be honest.


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## GailSusan (Dec 23, 2000)

It usually takes a while to find out all the career options. I didn't even know my field existed until after I finished graduate school in a whole different area of psychology. Music therapy does sound interesting. I was intrigued by art therapy at one time, but didn't pursue it.


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## Brockbaby (Aug 27, 2002)

I too am a music geek







hehe and I would love music therapy, but I don't have all the theory that is required. Psychology is very interesting, but I am currently majoring in Recreation.


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## Nikki (Jul 11, 2000)

Bump- This is a great post!


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## erin5983 (Mar 25, 2003)

Thanks for bumping that, Nikki.For me, it's encouraging to hear from an adult who has grown up with IBS. It's so hard for me at this age to imagine that it will probably never end, and that it might not get easier. As children, we have such big dreams for ourselves, and there's nothing like throwing in stomach problems to screw up that perfect dream. When I think about the fact that this isn't technically a sickness that will go away, it discourages me. However, I know that we are in such a great age where technology is really on our side. There are new medicines all the time, and IBS is becoming more and more acknowledged. I think, then, that my focus shouldn't be so much how my dreams for myself might be altered, but how I can work around that and still be what I am aiming for.When I think of myself teaching in a classroom and having to run out because of my stomach, it scares the hell out of me. I think I need to start thinking in terms of that if I worry about it, I'll worry my stomach into acting up. So there is really no use worrying about it.Still, it is hard sometimes to look ahead. Especially when you're having an awful stomach day.


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