I can't continue to live like this!

hi emma, as soon as i started reading your post i kept thinking there is more a miss. get a second opinion - i am a coeliac and i only discovered this after really putting my foot down! i found out 12 years of being fobbed off. i wish you luck, it's tough when you are continually fobbed off!

i get swelling in random parts at the most random times. i've been to drs thinking i had a blood clot in my leg not too long ago because i was only slightly swollen in one leg and it was hurting a little i was diagnosed with varicose veins and no blood clot im 31 and have 4 kids and some days im just so miserable i cant even get off the couch. i have stomach pain back pain joint pain all of it i also have diarrhea often but no blood but lots of mucus at times. i keep thinking i might have chrohns disease but my dr's wont test it because i dont have classic symptoms even though i think i do. anyway you're not alone!

Hi Emma,

Have your tried the FODMAP diet? Maybe there are foods that are aggravating you. What about tests for celiac?

Hi Emma.,have you tried looking at a web page called the ibs network ,it is very good and helped me allot.

Hi Emma

Reading this was like reading a story about myself, and my last 5 years of frustration and desperation. I get exactly the same symptoms as you, experience the same daily misery as you, and know what you are going through. The only difference is that I don't bleed as much as you, although I do experience this now and again. I have been housebound for a few years now and it really sucks, I miss my old life where I could do anything, go anywhere, eat and drink anything, and I would do anything to get it back.

I've been diagnosed with Fibromyalgia, CFS, Anxiety and IBS, all the fob off conditions when they can't find anything wrong, even when it's obvious there is. The latter is suspected Crohns Disease and my doctor has recently referred me to have the Pill Cam to have a good check of my small bowel, as recent colonoscopies and endoscopies have revealed nothing untoward going on. My last lot of blood tests however revealed high allergy markers. In between this blood test and my last one I had introduced a few different foods that I don't normally eat, and as the blood test prior to my last one had no allergy markers, one of these foods must be causing the blood allergy markers. Which one though will require repeat blood tests and stopping and re-introducing foods, not an easy thing to do.

As you said to one of the other kind individuals who replied to this post, it's not nice to hear you are struggling so much, but it is also comforting to know I'm not alone having to live a life the way we are.

Good luck with the FODMAP, it has helped me a bit and hopefully it helps you. All the best for the future and I hope you find some relief from your symptoms soon. Take care.

Hey, I have h pylori infection ( which i took antibiotics already) and inflamed stomach, with sinus (congestion and nose bleed when i blow hard), but why does this cause my back and legs arms to hurt, it feels like the gas is flowing backwards into my back when it's slow, or it's pulsing or vibrating, real weird pain. Happened when my abdominal started to make insane gas/water gurgling noise at night, then my left upper back start to hurt, then heels, legs, then arms, mainly left side of body?

no doctor can figure out what this is, it's too weird!!!

mainly the pain switches when changing postures with bloated constipation.

opposite of you, lost weight due to scared to eat a lot of food.

Try not to worry too much about going to the toilet, my doctor told me that a delay in having a bowel movement of anywhere between 8 to 10 days is ok, if still no movement then, then a visit to the doctor or trying a mild laxative would be the next course of action. I'm current on my 4th day with no bowel movement, I only usually have gaps of 3 days, so now it's starting to play on my mind a bit, however I've had delays like this before and I've eventually gone, so I try not to panic for now, and don't force a bowel movement, this will more than likely cause a bleed.

As for the bleeding, all I can say is that a little blood can go a long way, and even though you feel like there is lots of blood, you'll probably find it isn't in reality. I've had bleeding to the point it drips from my backside, but after my third colonoscopy with biopsies confirmed that the only problem I have down there is hemmorhoids I feel more at ease with the bleeding episodes. People who suffer with frequent diarrhoea or constipation tend to bleed more often than those who are regular. Have you had any medical procedures during your time being ill?

The medications I'm prescribed are Mebeverine and Omeprazole, mainly as I tend to get a lot painful bowel spasms and I experience a lot of Acid Reflux and GERD type symptoms.

As for foods my diet is very restricted into only the few foods I feel I am able to eat. Unfortunately my anxiety is such that I am extremely reluctant to try and introduce foods in my diet again, for the fear of what they might do to me. For me I have discovered that lamb, pork and fish are to be avoided, as is all breads, cake, pasta and pastry products (even though I'm not celiac, these food stuffs react badly, and I think its yeast that is the issue for me, as gluten free options have bad reactions too), pretty much all fruit and vegetables are a no go for me, as it all nuts and all cereals other than oats. I have to take supplements daily to get the vitamins and minerals my body needs.

Try not to get too downhearted with the foods list, we are all different and you'll probably find you are able to tolerate foods that I can't, the FODMAP diet can help, but for me it was the food elimination diet that identified problem foods, if the FODMAP doesn't help, then I suggest food elimination diet.

I hope all that info helps in some way, if you need any further advice don't hesitate to ask, we can be poorly together and share our woes! All the best and I do hope you find some relief from this nightmare soon.