I can't continue to live like this!

Posted , 7 users are following.

I have been ill now for the past 5 years . It started off with the odd flare up every now and again but now it is every minute of everyday . I have had many tests and scan and doctors are convinced its IBS and its ruining my life.

I am a 35 year old wife and mother of 3 children and I spend most days in my bed. I am constantly tired to the point of exhaustion, I sleep all day long , I am in constant agony every waken moment of everyday with my joints and back .

I have IBS that sometimes makes me constipated and other times makes me have diahorrea and any time I pass a stool there is always lots of blood. I am so swollen all over my body and have gained alot of unexplained weight. I am at breaking point. I have no value of life at all and spend every day suffering in pain . Surely this cant be it for my life ? I cant carry on like this . Has anyone experienced the same is me ? Any advice or tips would be greatly appreciated cos at this point I will try anything to live a fuller happier life with my family . I'm especially interested to see if anyone else has the weight gain and swelling symptoms that I have .

0 likes, 16 replies

Report / Delete

16 Replies

  • Posted

    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!

    Report / Delete Reply
  • Posted

    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!

    Report / Delete Reply
  • Posted

    Hi Emma,

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

    Report / Delete Reply
    • Posted

      I have an IgA deficiency which means I cant be tested for celiac but I've had 2 endoscopies and 2 colonoscopies that didnt confirm or deny celiac. Was at doctors today as she suggested FODMAP so going to give this a try starting on Monday as I'm in for more scans this weekend.

      Do you do FODMAP and is it easy to stick to?

      Thanks for your reply O really appreciate all the help from everyone.

      Report / Delete Reply
  • Posted

    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.

    Report / Delete Reply
    • Posted

      Thanks so much for your reply Paul. Your message really touched me as it's the first time I've had someone who is experiencing the exact same as me !

      I'm really struggling with it all at the moment and I am currently on day 5 of not being able to go to the toilet. I am just miserable with it all.

      what foods were triggers for you? Also what tablets helped ease the symptoms the most for you? Any advice or tips you could give would be amazing as I'm at breaking point with all this .

      Report / Delete Reply
  • Posted

    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.

    Report / Delete Reply
  • Posted

    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.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up