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My Story of whatever this is...

As far as the IBSD diagnosis, What is your opinion of what the diagnosis might be?

  • IBD

    Votes: 1 50.0%
  • Crohn's

    Votes: 2 100.0%
  • Auto Immune Disorder

    Votes: 0 0.0%
  • Parasites

    Votes: 0 0.0%
  • Food Allergy

    Votes: 0 0.0%
  • None o the above

    Votes: 0 0.0%
  • Yes, IBSD

    Votes: 0 0.0%
  • No, IBSD

    Votes: 0 0.0%

  • Total voters
    2
  • Poll closed .
:sign0144: So I've had IBS problems for over ten years. However, in the last year and half my IBS problems went from mild annoyance to severe everyday ruin my life problems. I also was changed from IBS to IBSD in this time as well. I get severe cramping several times a day with BM, and sometimes without. I'm often bloated and severely gassy no matter what I eat. It often feels like someone is twisting knives through my gut, and I often get severally fatigued during severe episodes. What triggered this change I don't know. I know I was laid off before this major change happened but other then that I'm at a loss for why I went from mild IBS symptoms to very overwhelmingly severe.
Some other major health issues I have have that complicate matters are that I have hyperthyroidism and almost 2 and half years ago had to have my thyroid removed because of more then 6 or 7 very large oddly shaped nodules. They were test for cancer and were benign. Because of this I now also have a sleep issue as well that is currently unknown. I sleep anywhere from 10 to 12 hours. Not kidding and worst I can't wake up. Waking up is horrible. It's like I have jet lag and everything is out of whack. I've told the doctors this. My neuro doctor told me to not stress so much and be more about the easy life. walks and such...okay.... Only I saw him because of the nerve pain and migraines but he didn't address either, lol. Waste of time, and money.
I also have very low vitamin D levels and am on a 5000 iu daily supplement.It took over three years to get my vitamin D level to rise to normal levels even with taking the supplement, and because of this they have me still taking it. I also am plagued with horrible Migraines. I'm on Topamax to control my almost daily migraines. I know this site is for digestive concerns but figured the more information I provide the better.
I recently saw an allergy specialist and I was off the charts with immunology reaction for the RAST test (skin prick test). They because of my severe digestive issues tested for food and airborne allergies. I came back overwhelmingly with airborne (not surprisingly) and the food was a hit for 8 food but only mildly so she said I'd have to do an elimination diet of those food. The foods that reacted were carrot, onion, corn, crab, peanut, sesame seed, mustard food, and celery. So far I've only manage to identify two possible real food allergies. Those being corn and onion. Onion being because when I read up online its actually a bigger family including leaks, and garlic.
I for the last 4 years have avoided all red meat thinking I was sensitive to it since I also have no gallbladder. When come to find out through this allergy testing it wasn't the red meat but the garlic my husband puts on the hamburger and steaks. :ack: As far as the corn that one I figured out from doing my best to eliminate all corn products. That's hard too. It's in everything almost. :runaway:
Anyway by avoiding that I've figured out that my stomach cramping seams less but not completely gone, but my migraines are gone... and actually didn't trigger during my cycle. Sorry if that's TMI for some. ;) Doing my best to continue to avoid those to items at least because I really don't eat the others much.

My symptoms can get pretty severe too so I'm hoping my allergy doctor is on the right tract because the GI doctors just keep putting on med after med. I've pretty much been on so far bentil and still on that one 4 times a day, then they added another that I can't remember, Then they tried the new Viberzi. Oh Viberzi that's a story in itself. Apparently I'm either allergic to it or because my previous GI doctor put me on the wrong dosing 100mg ( should have been 75, I have no gallbladder) caused a reaction that was severe itching and irritability of my lower rectum. I couldn't go. I started having pencil string stools and and sever lower pain, so they put me on a liquid diet. I developed a fever. The new GI doctor named Dr. Akbar ( It's a trap) nurses had me continue liquid diet at home until I got so bad they said to go to the ER. Worst experience EVER!!!
I never want to go to an ER again for GI issues. They treated me horrible, and I actually overheard the front desk nurse tell his friends that came in to be seen for something that don't worry it won't be long we just a a mentally ill lady and a lady with a cough. hmm well I could easily figure out I wasn't lady with a cough. Then 3 hours later when I was seen the ER doctor literally told me that they don't see these problems as concerns but we'll run test. They ended up sending me home with a generic prescription and feeling humiliated without answers. They didn't even know what Viberzi was? I finally got into my doctor to be seen because of a cancelation and they had me stop the Viberzi and started me on Welchol, measured me that this wouldn't last forever. Somehow I don't trust that. Then I'm pretty sure I experienced withdrawal too because for two weeks after I stopped taking it I had sever chills and would not be able to get warm for anything. I was severely irritable. I mean idk maybe it wasn't but jeez all I know is since I haven't felt that way.
Anyways pretty much every time they think they get control of my IBSD I start having major episodes again. Did I mention that I'm in school to be an art teacher. I already have my bachelors of fine arts so its just a certificate I'm attaining to teach. However, at my rate I'm worried I won't be able to work. Let alone make it through the day not having to leave a class, and that's just not acceptable. You can't talk about this health issue either to people. They just don't get it. I mean people you work with or friends. I'm sick of feeling sick. Sleeping my life away. Running to the bathroom all day. Memorizing where the restrooms are. Planning my route or day based on where the restrooms might be or won't be. Over that. :voodoo:
The most recent health try by my GI doctor in attempt to give me a better life they said was Xafaxan. Took several weeks to get it approved but approved it was. I've finished that but even though I'm not having daily diarrhea I'm still having stomach cramping and the less occasion rush to the bathroom. It boost 6 weeks to 6 months of reliefs. We'll see. I'll let you know I guess between that and the new diet how affective it is. Anyways this is it. My story.
Oh I forgot to mention. I have a good amount of stress. I know we're supposed to avoid that but for me that's just not possible. My son has autism, and we are working on everything so hopefully the stress will naturally come down as he becomes more cooperative. Anyways this not about him. He's awesome but stress is a fact of life for us ASD parents. Just thought I should mention it as it is a component to my story. A big one. Okay now that's my story. Sorry if it was rather long. :soledance:
 
Welcome to the forum and sorry to hear you are dealing with these severe symptoms for such a long time already.

Basically, it could be anything of what you mentioned or also another condition. Only proper colonoscopy, and if clear, probably also MRI can exclude IBD. IBS is an exclusion diagnosis, if there is no explanation for your symptoms. Even blood results can come back fine while dealing with inflammation in the gut and also in the joints, in my case.
So there is no other way than proper diagnosis by preferably a specialist for IBD, as especially Crohn's can be difficult to be diagnosed, as it happened not only in my case (met not only some other patients that have been suffering serve symptoms without qualified diagnosis, because they haven't consulted a specialist for IBD earlier or they were just told that it's IBS and they have to live with it).

IBS can be severe, but if it is, there is different treatment available. Those gastroenterologists who work in an IBD centre will for sure be able to also treat IBS, so I would recommend to see a specialist in order to really know what it is that you are dealing with.

All the best, hope you find the right consultant and can get to the root of your symptoms.
 
I probably should have mentioned I've had upper endoscope and two colonoscopies. The closest Ive gotten to relief is xafazan (possibly spelled wrong) the 2 week antibiotic for severe IBSD issues and taking out corn and garlic from my diet. I've been on multiple other meds that I ended up being allergic too. I would have replied sooner but I couldn't log in, lol. The food thing some don't support but I think I did have some difference with corn not in my diet. I don't thinkI'm allergic, I think I'm sensitive. As for the garlic idk but we figured out that for four year I didn't eat hamburger or steak because I thought red meat was an issues for my problems? Well through seeing the allergy specialist and onion on the east test flaring up we were able to figure out the real culprit was garlic. My hubby puts tones of garlic on all his red meats he cooks. I've had steak like five times with no rushing to the bathroom. Mind you I've had the xafaxin so that could be contributing to the lessening of issues but all I know is I'm sick of the bandaid method of doctoring I get from the doctors I've seen. I'm starting to think none of them know what is wrong and something is wrong. And now my allergy specialist wants me to add those foods back in so I did and I've notice several symptoms come back. I've seen tones of doctors with all vague answers. I have 5 specialist with three go doctors over the years and two over the last 1 and half because I fired the one. Maybe I don't have true food allergy per say but my problem could be so severe that some foods aggravate the issue? correct? So I'm planning on firing all my specialist. I'm going to a wellness center in my area that people with my health issues have sworn by, that the doctors at the clinic made them feel better. Its called the living well center. The one gentlemen my husband talked to had the very similar health issues as me and these doctors were able to actually get hi to feel better without tones of meds and not just a temporary thing. He says he's been better now for years since meeting with them. I'm not officially dumping my doctors until after I meet this doctor so I can access the truth of what people are saying. All I know is I'm running out of medicines to use to help and what's been happening is I become allergic to the medicines after awhile. That's what happened with Viberzi, and the reaction I had no one wants... anyways. Thanks for the advice and hope this added info helps. Something odd is my ibs changed to IBSD about year and half ago too rather sudden and its been that way since. I was laid off and before I drove school busses. I've always wondered if I got a virus that made me sick and it triggered a reaction because those buses are just a little dirty when we have to clean them for inspection. That even a bus that the driver like me tried to keep clean because the kids spit down the seats, put trash between the seats and gum, and all sorts of other junk. Even wearing gloves to get the bus back to clean clean for the inspections makes me wonder. But my test have never shown anything. I've switched jobs but as much as I loved driving part of me wonders if something happened to trigger this. I'll probably never know. Don't think me silly because my bus was already trashed too cause the previous driver never cleaned it. Disgusting so it took me 4 hours of cleaning to get it to clean and then the kids get it trash again in an hour trip home lol. Anyways idk if that could be but I've wondered? It's a great job but for someone like me with weakened immune system glad I transferred out.
 
Have you had them do a more thorough check of the small intestine? I think the MRI or MRE some mention here. Also the pill cam endoscopy.
 
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