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Discussion Starter · #1 ·
hey folks. Haven't been chatting in a whilie but i've been keeping an eye on how everyone's doing!I'm now really bogged down in everything and really need some advice so sorry if this is a bit long winded but i'm really stuck so i'm gonna try to do my best to explain and because i haven't posted in a while I'll start from the beginning.I don't know when i first got ill, i can remember having stomach pain enough to bother me but wouldn't last more than a few hours back when i was about 14ish (i'm 19 now) then 3yrs ago i started getting major d normally after meals. severe nausea as well, never sure which end to point at the toilet though i never actually vomited. would be shivering, clammy, hot, really not nice. at first i was fine btw flares but i was recovering less and less well until after 6mths i was flaring but still never feeling properly well in btw. at that point i was diagnosed with ibs. started losing lots of weight, reffered to a gi and sent for tests. will come back to tests and treatement in a min. went to uni last year, lasted 2 mths got depressed trying to cope, had a major flare up and made to take leave of absence til i got my health sorted by the uni. but i can't get my health sorted.symptoms: pain lower right, also recently started in lower left. colicky and sometimes so severe i can't move and like my mind shuts off from my bodyd- not every time i'm bad. generally go to the toilet 1-2 a day, well formed, normally just after i get up. when bad, lots of v loose d any time of day. but have been told i have lots of fecal matter in my intestines.blood & mucus in stool (black. but def blood)recurrent anaemia + myriad other deficienciesjoint pain (peripheral and back)extreme fatigue-sometimes sit in shower tray to wash! and when bad struggle even to sit upmouth ulcers (my acupuncturist claims they show infection)lack of appetite (when bad even the smell of food can make me feel nauseous)feverish & night sweatsmay be others, you get so used to things you forget to mention them!tests:lots of blood tests - 1 liver function came back high, all with varying degrees of anaemiaultrasound - 1 small gallstonenuclear scan, rigid sigmoid, barium meal - all clearI've tried lots of antispasmodics, couple of antidepressants, acupuncture, soluble fibre (makes me worse), elimination diet, stuff for constipation. seen a psy who says i've tried all the coping techniques on my own. dr can't think of anything else to try.first reaction is always crohn's, then tests come back clear so diagnosed ibs. i'm so stuck. i can't work and can't go to uni. it's been suggested i'm making myself ill thinking it's something other than ibs. does it sound like ibs to you guys? I know i 'click' more with my friend with colitis than with ibs. any treatment suggestions? please help!
 

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I can't work and I can't go back to school either. My aunt has colitis and I click with her too. I just got a new GI doc and he agrees with me that it seems like I have something other then IBS. In fact it turned out that I never had all the tests done to rule out if I had something else to begin with. So I go back to get more tests on Aug 1. Colonoscopy to be exact. I haven't tried acupuncture yet. Scared to death of needles. I have found that a heating pad does help sometimes. That with my Donnatal. Though the pills don't help as much anymore. I see it like this. Docs may know more then we do about how things work, but until we find something that works for us we need to keep bugging the daylights out of them. That's how I'm getting my more tests. I also switched my primary care doc and instead of going to the doc she wants me to go to I'm going to my cousin's GI doc. Ask your friend if they like their GI doc and see if you can see them. If you live near Buffalo,NY I recommend Dr. Kamil Alpsan. Good luck.
 

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Hi Cat, It really sounds like you've been through a lot. Have you had any food allergy testing including gluten/celiac tests? I would do the blood tests for food allergy and at the same time blood test for gluten if you have not. Some of your symptoms could point to gluten - Many celiacs/gluten-intolerant people get mouth ulcers (then again people who don't have gluten problems get mouth ulcers too). You could try L-Lysine for mouth ulcers to see if this helps (no more than 1,000mg/day then go down in dosage after a few days). What kind of elimination diet did you try? Even if food allergies don't show there are people who have food malabsorption problems and have trouble after eating certain foods. Also people have a combination of malabsorption problems, so it can be tricky and take awhile to figure out what is wrong. When you were on the elimination diet did you notice any foods that you tolerated better than others?Like bluenoggie said I would go to the GI doc that your friend goes to. If your friend has had success, you might too!Take care.
 

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Discussion Starter · #4 ·
hey guysthanks for the replies!bluenoggie, i'm very sorry for you! not a nice situation to be in. I'm glad that your GI is being helpful! acupuncture shouldn't hurt, if it does get the hell out of there and find a new one! I hope things get sorted.Yes i've been tested for coeliacs a lot. i've also been off gluten for 2mths with the elimination diet. dunno if that's long enough to def rule it out. not a food allergy either, that's been ruled out.My friend goes to the same dept as me though her GI dr is diff. She got lucky though, she collapsed and got v v ill the first time she flared. also colitis is easier to diagnose than crohn's. My gp is brill. she agrees things don't add up. but i don't know what to do as far as treatment or anything. i mean, does it sound like ibs?! to me the symptoms don't but then the symptoms don't tally with the test results.
 
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