So Frustrated

Discussion in 'The Watercooler' started by susiestar, Feb 11, 2013.

  1. susiestar

    susiestar Roll With It

    I think my body hates me. In the last twenty or so years, I have done multiple elimination diets, allergy testing, girlfriend/cf diets, IBs diets, yeast diets, etc.... Literally everything that comes around that people say will help your gut work better. I was diagnosis'swith IBS in my early teens, and for the most part fiber took care of the problems except for one day during my period. I could live with it.

    Now? It is so much worse. I have literally been ill since Sept 6. I was in teh ER again on Sun morning with nonstop digestive issues (both ways). Some of that was having thrown up medications for 36 hrs and it got better with the medications they gave me. But I have almost no life. To get to the doctor ninety min away for the knee shots, I don't eat or drink ANYTHING except for coke or sprite (which both seem to not cause problems as long as they are not cold and i don't drink much. I can no longer drink water with-o cramping and vomiting. Not EVER. I have torn my esoph three times since Sept, which is nasty and painful and is a huge infection risk. So far I have not gotten infected, but I wn't be that lucky forever.

    I think we have tried every medication known to the docs, and they just tell me to take phenergan and not eat things that upset my stomach.

    Gee, how long can I live on crackers and plain bread? Cause it is all that doesn't cause an immediate reaction, and it does cause a later one. Bananas, applesauce and rice? NOT good, serious cramping, and nasty to come out. So no BRAT diet.

    I take probiotics with digestive enzymes. Had to stop the fiber (the kind that does not ferment, because the fermenting stuff, O. M. G. pain!), and am on rx prevacid and donnatol and levsin (both antispasmodics). The docs, even the specialists, look at the pain medications and marvel that anything comes out of me, but that is ALL they are saying.

    How long can this last? We did a six week elimination when this happened three years ago, and NOTHING made any difference. How is it that NOTHING can help this? It isn't like I can take a multivitamin to make up for what I don't get from food. They all have vit d in them and I cannot keep them down.

    I am so tired, so worn out, so miserable. I just wish I knew what to do, what else to try. It is scary when every doctor says "Hmmm. I don't know what to even try next. Go see this other doctor." When that 'other doctor' has already told me the same thing and sent me to the one I am talking to. Makes me want to strangle them all with their own intestines about the sixth or seventh time through the circle of docs.
  2. KTMom91

    KTMom91 Well-Known Member

    Wish I had some advice for you, Susie. Hugs.
  3. Hound dog

    Hound dog Nana's are Beautiful


    I think I'd skip the probiotics as they don't seem to be helping and might be hurting at this point in the game.

    So..........having read this, and you know my background..........and no, I'm no expert but I do tend to sometimes think outside the box........what if it's not IBS, perhaps not digestive in nature, that the digestive symptoms are only that, a symptom of something else? With IBS usually something works, eventually. Seems odd to me nothing has really worked and also "appears" it just *might* be possible attempting to just treat the symptoms of the digestive has made it worse. IBS is usually a royal pain (no pun intended) to live with and keep under control but it certainly seems as if yours has not been under any sort of control at all for years.

    I can't pull a diagnosis out my back side or the top of my I'm not there with you, don't see even subtle symptoms you & family might not have noticed ( ones that have become "normal" for you)....and not enough info to really even point in a direction.

    Have you attempted going strictly organic yet?

    People like to think modern medicine has all the answers, but they don't. We've come a long way but there are still many undiagnosed conditions in the world. So perhaps if it isn't something known, then it is something unknown or at least uncommon enough for a doctor to tie it all up and say AH HA! Know what I mean??

    I have a working theory that some of IBS is people reacting to the pesticides, preservatives, and genetic modification on/of foods. More still may be unknown digestive conditions that present somewhat close enough to be lumped together but they've not yet gained enough information ect to actually diagnosis it as something and then develop a more accurate treatment for it. I think back to my grandmother's generation and I don't recall ever hearing about such digestive issues we see today. Not IBS type symptoms, certainly no where near as severe.

    Travis had a broad spectrum of symptoms/conditions. Many caused by the initial brain damage that was significant. How much was caused later we don't really know except the vision part. You're familiar with many of his issues over the years. Who would ever would be all tied into a rare blood disorder?? Who would've thought "blood" when his symptoms were neuro and visual?? Know what I mean??

    I think next time I saw the doctor, regardless if it is fam doctor or GI doctor.......I'd start asking if it is possible that the IBS diagnosis is wrong and perhaps it is time to start looking either into it deeper or in another direction completely.
  4. InsaneCdn

    InsaneCdn Well-Known Member

    Put this in the "stupid idea" category, but sometimes... it might be something to think about.
    You've been on a limited diet for how many years?
    What are the chances that this is the accumulated effect of missing nutrients etc?
    Not that there's an easy way to get back to eating it all, but...

    Apples and Bananas are known to be among the highest chemical-carrying fruits out there.
    Rice, like wheat, is more and more hybridized, and while it doesn't have the same complexity problems as wheat, it's not a perfect food either.

    In order to get some sort of balance back at all... have you tried making home-made, from-scratch chicken soup, with all-organic ingredients, and just drinking the broth? (the others can have the meat and veggies in their soup...)
    Make jelly out of organic applejuice and pure gelatin (not "jello" mix) - the gelatin is a form of protein.
    Somehow, can you get some nutrients through?
  5. susiestar

    susiestar Roll With It

    The various diets have not lasted years. The docs keep you on them for six to twelve weeks, and then add foods into them slowly/carefully, and you keep detailed records the entire time. Even when I did a few of the things like girlfriend/cf and yeast diets, using medical guides but no doctor involved, I kept detailed records and after six weeks I went slowly back to a more normal diet. The only nutrient issues in medical texts are borderline anemia (just like all the females on Mom's side) and super low Vit D, which they now think I cannot tolerate because my body has no idea what to do with it, which is pretty scary all by itself. The docs do not think vit D can cause these symptoms.

    I have done all organic and found zero improvement. I do think something is really wrong, and it may not be IBS, but have had multiple gastros do multiple rounds of testing and they have no clue. This is why I am not sure about the IBS diagnosis, it is what they give you when they don't have any other diagnosis to toss at you. Sort of like fibro, according to about half the docs I have seen.

    Homemade, organic chicken broth tastes great, but my body doesn't like it any more than anything else. I am truly not trying to be difficult or say "it won't work" and ignore it, I have done alll of these things. Most mroe than once. Well, the elim diets over years, the organic broth I did off and on for several months betw now and last Sept, the entirely organic happened twice in the last five years.

    I am so sick of this. My mom has given every suggestion she can think of, and I think Lisa is right, something else is causing it. I don't know ANYONE who has tried all that I have and not had ANY positive results.
  6. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    I'm with you and Lisa, I think there is something else going on. I would also stop the probiotics were it me.

    I do believe that were you suffering from IBS, you would find relief that you are not getting now.

    I have no ideas, but offer my support and positive thoughts.

  7. Bunny

    Bunny Active Member

    My sister in law was struggling with some of the same problems. Constant vomiting, diarrhea, she had to be very careful what she ate. Food with gluten caused a lot of problems. She was also told IBS, but nothing seemed to help. she still struggled go get out of ned some mornings, and this is a woman who home schools her kids. She needed to get up, but she felt really lousy. After nearly a year she went to an endocrinologist and after blood work found she had auto-immune issues. Thyroid, Hashimoto's Syndrome, and something else, but I can't remember what. Keep searching for the reason that you don't feel we'll. There might be something more going on.
  8. Jody

    Jody Active Member

    I also don't agree with the IBS, I have two friends who are going thru similiar problems like you, not quite as severe, but definately they are having issues. Both have had their gallbladder out and are constatnly have issues. Can you et eggs at all. If you can I would eat two with curcumin, or tumeric. It is a natural way to help with digestive issues. Also incorporate a little honey into your diet everyday. Honey has crazy healing properties. I put some in hot tea everyday. Chai tea is soothing. There is a broth made by Emerl, It has no sodium, it is a vegetable broth and it is very good, You could add your turmeric in the broth if you can't have eggs. Gosh I feel for you. I wish I had the answer for you. Thought maybe these ideas would be worth trying.
  9. buddy

    buddy New Member

    One of our board sisters was recently told that sometimes the enzymes can start digesting you....with all the limiting and sickness. I think she said things are improving since she stopped. Like you nothing was working.....
  10. rejectedmom

    rejectedmom New Member

    I'm gonna make a strange suggestion. Besides stopping the probiotics and enzymes, Try drinking and cooking with only distilled water for 6 weeks. If you are on city water the chlorine (I am allergic to it) and floride could be wreaking havok with your body. If on well water, there might be some bacteria or chemical that isn't tested for leaching into your well. I say distilled because it is the only pure form of water all others have minerals in it.

    by the way I have had my gallbladder removed and also have thyroiditis. Besides the thyroid medications, I also take metformin for my blood sugar issues. I take digestive enzymes and also took bile salts but have stopped the bile salts and cut way back on the enzymes since the metformin was introduced because the big D became a real problem.

    I have the big D from time to time still but no vomiting or nausea. I wouldn't say my system functions normally but it is better since cutting back on the enzymes and bile salts. I only use them when I have a high fat meal which is infrequent. -RM
    Last edited: Feb 12, 2013
  11. Trixy Rose

    Trixy Rose New Member

  12. susiestar

    susiestar Roll With It

    turmeric is not something I can eat as even the smell of it causes severe nausea. First of next month am buying a new mcrowave because husband heard it was healthy and now puts it on dang near every meal he eats, of course it must be heated in the microwave to 'mix' the flavors and bring them out. That stuff gives me migraines like crazy, and even when it doesn't trigger a migraine it makes me severely sick. If he heats it in the microwave, only the kitchen reeks of it. If he uses the oven, the entire place reeks. The new microwave will be for my rice bags because I have thrown seven away in the last four months because I couldn't get the smell out of them. As husband seems to feel he gets some huge benefit, he doesn't feel it is fair to ask him to stop using it. As for the benefit, he has been in his dr office four times as often since he started using it than at any other time in our marriage, including all the appts for pneumonia the 2 times he had it. But i can't win, so he can be careful until we can get another microwave. Turmeric, cumin and a few other spices have done this to me as long as I can remember, no clue why.

    Distilled water is sure worth a try. Come to think of it, we moved from well water (which wasn't a problem for me) to the city and city water in mid Aug. So it could be that. THANK YOU.

    Thank you ALL for the ideas, I will try what I can, and I appreciate every single post and comment very much.

  13. rejectedmom

    rejectedmom New Member

    Trying the water is simple enough and if it works... great. If not... it isn't a big deal. I will look for future posts to see how you are doing. -RM
  14. Signorina

    Signorina Guest

    Hi Susie, I am sorry to learn you are so ill and that the doctors haven't really been helpful. I can't imagine how frustrated you must be!

    Have you consulted and endocrinologist? Maybe the gastros - by nature- are looking so closely at the digestive system that they aren't considering other sources? I would consider taking to an endocrinologist or even better - a reproductive endo and see if they have fresh ideas...

    When I read your symptoms, the first thought I had was PCOS.

    Also, my cousin had suspected IBS that never really fit the pattern 100% and the treatment helped but not completely. It turned out she had scar tissue and adhesions from pregnancy/c sections/endo that had impacted her bowel/digestive function.

    just a few ideas, I hope you find relief and wellness soon!!
  15. susiestar

    susiestar Roll With It

    Not sure this is totally true, but when I had my hysterectomy and both ovaries removed, they told me PCOS wouldn't be an issue because I have no ovaries left. Mine were in really bad shape, and were removed about eight or nine years ago. I will look into this, because if it could be related, it could be treatable, maybe. Thanks.
  16. HaoZi

    HaoZi CD Hall of Fame

    I have no additional advice, just wanted you know I'm following this and hoping something helps you! Have you had a genetic work-up to see if there's any rare disease going on?
  17. Signorina

    Signorina Guest

    Hey Susie, hope the info helps. Fwiw, PCOS is an endocrine disorder; so a complete hysterectomy is not a cure. I think an endo visit may be a worthwhile thing- even just for a fresh set of eyes. Hth & hope you feel better soon!
  18. TerryJ2

    TerryJ2 Well-Known Member

    Great ideas here.
    Having just recovered (knock on wood) from similar issues, I can commisserate.
    I totally agree, forget the digestive enzymes. My gastro told me not to use them because three of the ingredients can digest your gut as well as the food. Which is probably fine for most people. But not for you and me.
    I like the idea of drinking distilled water. You have no idea what is aggravating your insides so you have to elminate everything. Even your tap water.
    I would go totally gluten free.
    Skip the applesauce. Go with-plain rice. Make it every day.
    No sodas, no red meat, no dressings, no jam, no ketchup, no salt, no pepper.

    In the meantime, make an appointment with-an endocrinologist. I agree with-the others. You've got some autoimmune thing going on.
    It could have been caused by a virus, and then it got out of control and triggered other things.

    I'm sending healing, bland vibes!!!!
  19. TerryJ2

    TerryJ2 Well-Known Member

    Oh, and no vitamins or herbs. You can use them again later, when you've healed. And you WILL heal.

    Also, be sure to rinse your china and utensils really well so there is no soap residue left on them.
  20. cubsgirl

    cubsgirl Well-Known Member

    I hope that the answer is as simple as the tap water. I also hope that you feel better soon. I had a bout with IBS about ten years ago and it was horrible. There's nothing more frustrating than the docs not knowing what is wrong with you.