Crohns Disease and strange symptoms of...what? - Page 2

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Crohns Disease and strange symptoms of...what?

This is a discussion on Crohns Disease and strange symptoms of...what? within the General Off Topic Discussion forums, part of the Life Beyond Horses category

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        07-03-2013, 12:49 PM
    Teen Forum Moderator
    Thanks for all of the different ideas guys. I really appreciate it. I'll research each of the things that you mentioned, as I'm really, really ready for some relief.

    Tracer, does your sister have anemia? I ask because even on iron supplements, I am always boarderline anemic which affects my energy significantly. I also have high cholesterol (genetic, I'm partially Vietnamese). I can not eat acidic fruits, drink fruit juice, or drink soda as it tears me up and HURTS. I also cannot handle much red meat without feeding sick (I eat a lot of fish and chicken) and I've gotten to the point of not being able to eat fast food or resteraunt food at all because of the cramping afterwards.

    Its so strange because I sound a LOT like your sister. I didn't mention it but I am CONSTANTLY getting strep throat and throat infections (negative strep but still pain) and as I already said, I have very weak lungs and bronchioles. However, I do not have asthma unlike both my sister and my mom.

    I'm actually worried that my gallbladder was not the issue, Crohns was, and now I don't have the organ which is just stressing my body even more. :/ And now I have all of these allergies. How they're related, I don't know...but they all started when I started having what I thought were gallbladder problems.

    The constant sickness makes me feel aweful, and my regular doctor (who I deeply dislike, but I'm a minor and my mom likes her for whatever reason so I'm stuck with her) likes to blame me for everything. She says I always have strep because I don't wash enough, but I SWEAR I do. I wash my hands thoroughly at least 10 times a day, brush my teeth 3-4 times a day, use Listerine, shower daily, keep my room tidy, use lysole... but she makes me feel like this is also my fault. ALL of my doctors also like to blame my illnesses on stress, and while I DO handle stress poorly I've made drastic changes to help me learn to cope with it better and I see no changes. And how can ALL of this be from stress? All they tell me is 'deal with your stress. Don't be stressed. Don't do anything and it will get better' but life just doesn't work like that. I have a job, horses, a family to take care of, school (I have learning disabilities too), and other typical teenaged problems. I can't just not do anything or not be stressed. Its impossible!

    MissyMay, no I am not Mediterranean. I'm unsure of what my mom is, though we think she may have some irish in her (very pale, freckles, reddish hair. Her mom and grandmother are the same way) and my dad is Vietnamese.

    We do have a LOT of history of genetic problems though unfortunately, on BOTH sides so I really got a double whammy when it came to the gene pool. Both of my siblings are healthy as can be, with the exception of one having asthma. In our family history we have GERD in literally all of my dad's side of the family, lactose intolerance (I however, am not lactose intolerant. I can not drink lactose free milk either) because of the Asian side, cardiac disease, fibro myalgia, chronic migraines, osteo proses (sp?), liquid around the heart and lungs, and GI issues. So I could have anything, honestly xD its pretty awful. If we were a horse breeding operation we would be the lowest of the low backyard breeding programs. LOL. No immediate family member of mine has Crohns though, as far as I know.

    Darrin- I sure hope that's not what I have :/ it looks horrific. I don't think I match most of the symptom's, but I guess its always possible.

    As for Celiacs disease, I was tested twice for both Celiacs and for just an allergy and they came back negative. But like you all say, its possible that I could still be intolerant to it! The weird thing though, is wheat (and other carby things...specifically saltine crackers) is one thing that makes me feel a bit better. It coats my stomach for a short time and relieves the burning caused by so much bile, and I don't have reflux from them. I go through a box of saltines every two weeks or so because they're sort of my 'turn to' food. I could always try going off of wheat for a week though, just in case. I'm willing to try anything.

    As for reflux medications, yes I've tried Nexium as well as all of the over the counter reflux/heartburn pills. None work, so I was prescribed a high dose of protonics that help if I take them religiously. I am currently taking a dose of '80' daily. 40 in the morning 40 at night. This causes me to be very dizzy though, which I hate.

    For a short time I was on Carafate (sp?) which was supposed to counteract some of the damage to my stomach lining by coating it before I ate, but it was insane to try balancing that with my Protonics (the neutralize each other. I can't eat without taking protonics, but I was nauseated and burning without the Carafate) and I began throwing it up for some unknown reason every time I took it, no matter if it was liquid or pill form. So I quit.

    Currently my medications are limited to the protonics, water kefir (I've found it helps in the slightest amount), and a nonsteroidal antibiotic that has the affect of changing the motility of my bile SUPPOSIVELY, but I don't think it works and it makes me dizzy too.

    Wallaby, Excedrine is one migraine medication that I can handle, and I take it a LOT. I take 1-2 daily for my daily headaches because I have them no matter what, all day every day, but most severely in the morning. They think I'm addicted to it now and have rebound headaches from it, but I can't function without it (crippling headaches). It, however, is also damaging my stomach lining, so its really a vicious cycle that I've gotten into. I took myself off of NSAIDS for a month last year to see if my stomach pain went away and the burning lessened, but nothing else changed.
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        07-04-2013, 01:27 AM
    I'm not sure about my sister being anemic persay, but it's very likely as I do remember that she was getting regular iron transfusions for a while. I myself have just come back from having very low iron levels. I also can't believe I forgot to mention her biggest problem - She can't eat anything that has fibre over 4. That limits her options with bread, and she can't even eat more than a handful of popcorn.

    You doctor sounds horrible, even worse than my sisters. I would seriously sit down with your mother and say something along the lines of wanting to try another doctor to see if they have more insight into what is going wrong. Don't outright say that you want to change because the doctor she likes is terrible. With any luck you'll be able to find another doctor that she likes better. I'm very lucky that the specialist I was referred to is absolutely amazing - if I'd been sent back to my sisters' doctor, I have no doubt that he would have just waved it off and done nothing about the possibility of me having Crohns, whereas the one I did go to sat up and took a lot of interest in the fact that my sister has it.

    It also doesn't have to run in your family - my second cousin is the only other person in either side of the family that has been diagnosed with Crohns. The only reason why we're so suspicious about me is that oftentimes if one sibling has it, the other does too.

    It really sounds like you've been dealt a horrible hand. Quick questions on the medication front though - have you ever been put on Somac? I was put on it a few years back after waking up in the night with absolutely horrible pains, and since I've been on it I only rarely have my sleep disrupted and my pains haven't been as bad. It has the added benefit of stopping the nauseous side affects of the only pain killer that works on my period pain.

    I really thing you should have a colonoscopy, no matter how awkward and unpleasant they may be. You clearly have something serious going on, and I can't believe it's taken your doctors so long to consider Crohns.
        07-04-2013, 06:11 PM
    Teen Forum Moderator
    Yeah, I don't like my doctors at all. They're just so 'ladidah' about everything that goes on with me, as if it isn't ruining my life.

    No, I've never tried Somac. Is it a painkiller?
        07-04-2013, 06:23 PM
    What you have sounds autoimmune, to be sure. They are no fun at all. I've got celiac and endometriosis, which are both autoimmune. Crohn's is as well. The name of the disease just depends on what part of your body your immune system has decided to eat today. :( :( :( I have a friend with Crohn's, and from what I understand it's a lot like celiac, but not triggered by wheat proteins. She has trouble eating high fiber stuff at all, though. We both have chronic migraines. If you can take Benadryl, it actually can help stop a migraine. Magnesium is also helpful. Other than that, eating as clean as you can and exercising some helps to a degree. Stress also seems to play a pretty big role. I think those of us with autoimmune conditions are just much more sensitive. Doctors like to blow off our conditions, too, since they are not well understood. I'm very sorry.
        07-04-2013, 06:29 PM
    Teen Forum Moderator
    That's ones thing I don't have. If I go way overboard (like eat a bunch of triscuits or something) I feel painful and uncomfortable, but normal fiberous foods don't bother me any more than other foods do.

    I took magnesium and riboflavin in high doses for my migraines for a while to see if it would help, but unfortunately it didn't and I had the side affect of yellowing skin and constipation for some reason from taking so much of them. I've also taken Imitrex as a migraine stopper, but our insurance only pays for 2 per month so I have to pick while migraine every two weeks I want to stop. It stinks. Also, in the last few times I've taken it, the migraine goes away but in its place comes severe neck pain. Its not even worth the pain.

    I exercise almost excessively though, and it does help some. Lower stress levels means less migraines too BUT I still have that persistent every day, all day headache that is so reliable that its ridiculous.
        07-04-2013, 07:00 PM
    I get those too. I wish I knew what to tell you. For the Imitrex, I told Walmart that I have no prescription insurance (which is true) and they only charged me $40 for 16. Not too bad. However, the migraine will often come back the very next day, or return as a plain headache that I can't treat at all. If I find something magical, I'll let you know. :(
        07-04-2013, 07:18 PM
    Have you seen a chiropractor for your migraines? My migraines have one main trigger and a secondary lesser trigger. The main trigger is my allergies, secondary is when my neck is out. What's worse is my allergies are more likely to trigger a migraine when my neck is out because (I think) my lymph node is putting pressure right where my neck goes out.
        07-04-2013, 07:55 PM
    Teen Forum Moderator
    No, I haven't seen a chiropractor. Someone mentioned doing that a few months ago so I told my mom about it, but our insurance doesn't cover it which means it would cost us a lot. I don't think she's willing to pay for one :/
        07-04-2013, 08:17 PM
    Yeah, gets a bit spendy visiting any doctor if your insurance doesn't cover it.
        07-04-2013, 08:29 PM
    Wow. Just wow. I mean, how much can one person do and deal? I have no information for your general health issues, but can input on stress and colonoscopy.

    Someone posted that (s)he was under general anaesthesia for a colonoscopy. I don't know why that would be the case. It is really considered non-invasive as the examine involves an already existing orifice / pathway. No need for any anaesthetic at all, local or general. While the prep is indeed the worst, it's almost worth it just for the way your digestive system feels after it's all over. Getting all cleaned out like that made me feel great!

    IMO, the stress should be a huge factor being considered and dealt with. You do have a lot on your plate. If you think about it, do you ever really, truly, just do NOTHING? Not sleep, not read, not watch TV, but NOTHING? Sit in the yard and count the blades of grass kind of thing. Those times when you are physically incapable of doing anything don't count. You expend huge amounts of energy in your life, my girl: academics, horses, health, exercise, who knows what else, plus the pain and other symptoms. It's not just physical energy, it's emotional and psychological as well. It's quite possibly just too much.

    So, while you continue your quest, consider that any treatment's effectiveness is/will be in direct ratio to the energy available to work with the treatment.

    Dealing with a doctor(s) that blame you (or that you interpret as blame) is definitely a huge problem as well. I find it odd that with all the support your mother has given you, and all the maturity that you have, that the choice of doctor is not more readily up for discussion.

    Sending you more hugs.
    Wallaby likes this.

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