My IBS Journey – So Far: A Roadmap (with Road Signs Along the Way)

My IBS Journey - So Far: A Roadmap (with Road Signs Along the Way)   1987 It begins suddenly  AKA: Post-infectious IBS Sick in Hawaii   1. Visits to local Doctors Lots of tests 1988-89. 2. Diagnosis of IBS and Peptic Ulcer 1988 3. 1 year spent visiting a chiropractor 4. 1st Elimination Diet given by a holistic Doctor 5. (lots more icky tests) Visits to far-flung Dr's. doing IBS research 1990-1992 road trips (& flying) to: a) Dr. Marvin Schuster, Johns Hopkins, MD b) Dr. Arnold Wald, Pittsburgh, PA c) Dr. Miner, Kansas City, MO 6. 1 year of neuromuscular massage therapy 7. Many visits to an "alternative" chiropractor who used magnets and "applied kineseology" 8. 1st of many visits to a nutritionist 9. Many visits to Dr. Norman Sohn, NYC colorectal surgeon had a "Galvanic Stimulation" machine. Supposed to help a spastic puborectalis muscle. That plus other "cures" too awful to go into here. 10. Fiber supplements. First they worked, then not. 11. Trial of Rifaximin (2002) Antibiotic as per book by Dr. Pimentel 12. Bentyl, Levsin don't help (antispasmodics) 13. Eating less and less variety, anxieties grow. 14. Life is ruled by IBS 15. Visit to UNC to se Dr. Drossman *Blog coming devoted to this visit 16. 3 months Michael Mahoney IBS Hypnosis Tapes 17.  8 sessions Cognitive Behavior Therapy 18. And yet another nutritionist- this time to try gluten-free 19. Physical therapy for 1 year - Pelvic Floor Dysfunction 20. 5 days on Amitiza (infinity sign) Still searching now doing this blog very therapeutic   Road Signs: IBS/D changes to IBS/C   OMG! This is all guesswork They know nothing!   I don't eat before I go anywhere   I start skipping lunch   FODMAP Diet does not work for me   Tempted to do crazy expensive blood test   Everything I try makes me worse   Cipro seems to help but too risky to take long-term   Solitary life has arrived   Danger! Social anxieties mounting     My IBS Roadmap Key:   Desperate Crazy Detour   Well-thought-out plan (researched)   Recommended (advice)

This is a graphic image of just some of the stops along the way on my long 25 year IBS journey. If it makes you dizzy to look at it, that’s just what it feels like to me. Some of these stops will have (nay, require!) separate blogs of their own. But I wanted to present the journey so far. It’s been quite a long road, and unfortunately, I have found no solution. I wish looking at this overview would give me some kind of perspective. All I see is what didn’t work (which was everything). Some of the treatments, such as the hypnosis tapes and the neuromuscular massage therapy temporarily made me feel better. And that’s certainly preferable to making me sick (which many of the other “cures” did!). I am a big researcher, and somewhat of a control freak. So, researching got me nowhere, and I’m certainly out of control. I have found that there are a lot of professionals (including my gastroenterologist) who would love to help people like me. They just cannot find the way yet.

13 thoughts on “My IBS Journey – So Far: A Roadmap (with Road Signs Along the Way)

  1. What a great road map. I feel like I should make one of these for myself to kind of see where I’ve been and look forward to different things I can try- you’ve definitely tried more than I have. I especially liked your bits about eating less and growing anxieties. I seriously thought I was one of the only ones who had developed many anxieties along my journey because of IBS. I’m glad to know I’m not the only one- even if you’re suffering, at least we’re suffering together? Haha, if only neither of us had to. But if I could never eat again, I probably wouldn’t. Even if it meant letting go of all of my favorite foods. I feel like every time I eat my quality of life decreases. Ugh.

    PS- thank you for creating this blog. Your images will go a LONG way to explaining what it’s really like to have IBS. There is only so much that words can do, but I really feel like your pictures open up a whole new world for IBS awareness.

    • Rachel,

      Thank you for the kind comments. I finally found a way to combine my artwork, humor and angst from IBS! I am looking forward to reading your blog. There will soon be a sign-up area for new posts on my blog. I’ve got lots more “material” (unfortunately), so stay tuned!

    • Hi Rachel,
      Just want to say I identify so much with your comments and I too had the feeling that I wouldnt care if I ever ate again if I didnt have to!
      This was earlier this year and not as bad now but am missing social occasions,nights out where eating a lot is involved and if I do go along,the anxiety/possible repercussions not worth the effort.
      Hope things get better for you.
      Regards,
      Michelle.

  2. colon highway, it’s a twisty and bumpy ride thats for sure. I think i would give your trials a run for your money. Well id go pretty close. I have done everything bar urine therapy i reckon…

  3. I hope someday you find out what’s going on and can finally be better again. I know how horrible it is to have this ruin your life, even though I’ve only suffered from what the doctor thinks is IBS for about 7 months. Can you tell me more about your experiences going gluten free? I’ve tried a gluten free diet for a week with no change, but I think I needed to stick to it longer (a month at least) to see a difference. I can’t imagine suffering as long as you have, and I commend you for being so strong and continuing to look for answers rather than just give up your life to this disease. Thank you so much for making this blog and sharing your experiences and knowledge.

  4. Mariah,

    Hopefully you will find some kind of relief. Many people do, or reduce their IBS to episodic events only. I guess it depends what kind of dysfunction you have and what level of severity. I have symptoms every day and night, so I have a more severe type. Re: Gluten-Free, I was tested for Celiac Disease two different types and ways. Both came back negative, but I decided to try a Gluten-Free diet anyway, out of desperation, with a nutritionist supervising me There was no change whatsoever with my symptoms, and I was worse in a different way. Which told me (and the nutritionist) that wheat and gluten have little, if anything, to do with my basic motility dysfuntion. But maybe get tested for celiac disease…a blood test is easy-or give the diet a try on your own or with a nutritionist helping you. Good luck, and thank you for your kind words about my blog…more cartoons on the way.

  5. Hi, thanks for posting this. It would be funny if it wasn’t so horrible. At least you’re doing something creative with it 🙂 I have been suffering with IBS for many years and have gotten so much worse the last few years…and have been gluten free for over 2 years now and feel worse in some ways lol. I think I’ve tried pretty much every route that you have (naturopaths, homeopathy, pills, teas, gluten free, diet changes, tons of tests and drs.), also all to no avail. Thanks for making me feel a little less alone in this. Although the fact that no one can find any help is not very promising, is it? Thanks for sharing your story with us.

  6. Thank you for your kind words…they make me feel a litle less alone, also. Yes, doing something creative with this lousy condition has helped me. Not that I feel better, but I am able to get through it a bit better psychologically, at least for now. And no, it’s not very promising, but I certainly hope we can find some relief someday. More cartoons on the way.

  7. hey i think i have a similar condition to you do you mind if i ask you a few questions in terms of what other symptoms you have had? do you also have urological issues involved with you issue?

  8. Please ask me questions if you’d like, and I will answer what I can. I’m not sure what you mean by urological issues.

  9. I found your website while looking up Dr Arnold Wald. My 19 year old daughter just finished a miserable freshman year at University of Wisconsin. She has had IBS issues for a couple of years & going 3 1/2 hours away from home and adjusting to college life just made it worse. By Thanksgiving she had lost 20 lbs, down to 95 and totally depressed. She missed out on all the social life of freshman year. Over Christmas break she was scheduled for a colonoscopy and endoscopy, but her Dr. paid no attention to her IBS-C status when prescribing her prep, so after drinking 1/2 of the liquid with no results by 3:00 am, and no room to swallow any more,we had to cancel the 8:00 am appt. We decide to try a Dr near school with very high hopes for Dr Wald. Did he even act like IBS exists? The 1st visit, he was very nice. He scheduled an endoscopy which showed H-pylori & some damage from that. We were so excited, hoping that maybe getting that cleared up would help her feel better. Dr Wald & his assistant made sure we understood that would NOT help….why couldn’t they at least given us a bit of hope? He wanted Kate to drink protein shakes to put on weight…he said her system was very slow because she was so underweight. He gave no suggestions of any that wouldn’t make her feel,worse (she’s lactose intolerant), just, “Go to Whole Foods”. When asked what to take to help her symptoms, no answer. The next appt. Kate hadn’t gained weight, but told Dr Wald the shakes grave her D, he just said, “Well, that shows your system Is working”. Then pretty much said he couldn’t help her. After we left the office I read the visit report & under diagnosis, he wrote DEPRESSION. Didn’t even tell us that in person. I had asked to get a Psychiatrist involved because to help he deal with her depression (she was depressed, but that isn’t why she bloats & feels miserable). He said his office would set an appt up with someone that specialized in IBS. When I hadn’t heard anything in a week, I called & was told his office doesn’t do that, I’d have to find one myself.
    Anyway….that was our experience with Dr Wald….sorry this was so long. Still hoping to find some hope somewhere. Kate is also an artist & her final project for her 3D art class was a book about IBS. Your cartoons reminded me of the book…it does help to laugh & the book did help explain to her class what IBS is like. It’s pretty shocking how devastating IBS is & it doesn’t sink in till you start researching it. Thanks for putting a different spin on it! Don’t worry, I won’t do any more long posts!

  10. Barb,

    I read your post with sadness (and admiration) for your daughter. Making that IBS book for class was a great idea. Re: Dr. Wald, I went to him around 20 years ago. I was going through a thought process at that time that if I did enough research, and made appointments with those Dr.s who were doing IBS research, then perhaps I could find some answers and relief. Dr. Wald was one of those that I visited. I cannot remember much, but I do remember getting no help (but, of course, I got no help from anyone), and not being terribly impressed with him. I remember taking some sort of psychological test as part of the visit, and I’m sure they were looking for traits that we IBS-ers share. I’m amazed that he put your daughter’s diagnosis as “Depression”. Of COURSE she’s depressed, living with all of her symptoms…who wouldn’t be? I hope she finds a path to discover some way to control or live with the symptoms. I was OK when I was her age…normal. Mine came on after getting very ill, and it is categorized as “sudden-onset” IBS. I wish I had some answers, both for her and for myself and others. I had a period in my life when I, too, lost about 40 lbs from being afraid to eat, during a time of extreme outside stress. Perhaps being away at college exacerbated her symptoms and caused her to also lose so much weight. Fear of eating and the symptoms that follow, can do that. But as things in my life settled down, I started eating and gaining weight. Right now, doing my blog helps me, and thank you for viewing and commenting.

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