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Some answers needed please!!

Posted , 5 users are following.

SaiA
SaiA

Hi All,

So I am new to these forums and I'm not sure how to start. Anyhow let me try. I am female 28 years old, do not smoke or drink alcohol. Admittedly I have never had the best diets. It started a few years ago and I recall starting to take some vitamin tablets. I found one night that I had severe back pain that came around to my abdomen... It stayed all night until the early hours where I could finally sleep. I stopped taking the vitamins thinking they were the cause. Since then every other month this pain came about and it would usually last for a couple of nights and would then go away. I went to the GP and as expected they said it was IBS. I didn't dwell on it too much as the pain was not frequent and I felt as though not eating helped the pain somehow. This year February I had two incidents of diarrhoea and vomiting with severe stomach pain. GP did tests and found I had h pylori. I was given the triple therapy medication for this which knocked me out. I was in bed and constantly needing to go to the toilet. The GP advised that I finish the treatment. Since February I have not been right. I have persistent cramps and there is no rhyme or reason for this. It has taken over my life, I have lost over a stone in weight and again went back to the GP and demanded to know what was going on. GP continued to think it was IBS but it was the locum Doctor who thought I might possibly have IBD. I gave another stool sample which came back positive for inflammatory bowel disease. To some extent I was relieved to know the cause of the pain and I still don't think this news has sank in yet. GP seemed to think I have UC and has referred me to the specialist. I am not seeing the specialist until the end of June 2015. Subsequently I went to the emergency doctor because the back pain returned more severe and he seemed to think I have crohns. I continue to get cramps every day and I don't mean to sound ungrateful because I know it could be worse but I am utterly fed up. I stay in bed most days because I don't have the energy or the appetite. Sometimes the eating helps and at others it triggers it. I go to the toilet once or twice a day and there is no blood in my stools. Main issue is the stomach cramping... I asked if they could somehow quicken the referral and their response was no. I genuinely feel as though I cannot wait until the end of next month just to be seen by the specialist as I presume after this he will do a colonoscopy. I have enquired about going private but the cost is too much. I am currently off work and just feel overwhelmed by all of this. And they have prescribed me buscopen which doesn't help whatsoever.

Any help and advise would really be welcome :-)

Apologies for the life story

Saima

0 likes, 19 replies

19 Replies

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  • stace224
    stace224 SaiA

    Posted

    Don't really have an answer to your problem but just want you to know that you are not alone o

    In this. Totally understand where you're coking from been going through the exact same thing have a couple of good days then lots of bad ones, severe cramps and pain and back pain etc etc. If you ever want to chat send me a pm and I'll pass on my Facebook x

  • Joyalb
    Joyalb SaiA

    Posted

    Try a discussion board for similar symptoms as well as this one such as BAM (bile acid malabsorption) as tests and treatment vary, I have Crohns but wasn't diagnosed until the inflammation could be seen on a special scan of the terminal Iliem where it usually starts, do not be fobbed off with IBS as treatment and diet is so different, you need a good specialist that will test everything, takes time but end result worth the wait 
    • SaiA
      SaiA Joyalb

      Posted

      Thank you... I feel as though as they fob me off each and every time. I do hope he is a good speacilsit and can guide me through it.
  • jo19531
    jo19531 SaiA

    Posted

    Hi, sorry to hear u r going thro this. I'm also awaiting a formal diagnosis. Unfortunately it is a lengthy process unless it is picked up on a colonoscopy or other test straight away sad Do u know how high ur inflammation was in ur stool sample? Mine hasn't been picked up on the usual tests so I now have to have other tests to look for it as it's not in the terminal ileum rolleyes I didn't find buscapan a help either but I do find peppermint oil (colpermin) work for me as long as I never stop taking them. I hope u get answers soon, feel free to DM me if I can help at all. Good luck x
    • SaiA
      SaiA jo19531

      Posted

      Hi Jo,

      They didn't indicate how high the inflammation was other than saying it was positive. First sets of bloods came normal and second also showed some inflammation in the body. Yea that in itself will be a long process but I hope I get a clear diagnosis so I can manage it. I am currently in limbo 😒. Thank you I will try the peppermint oil. I guess we need to keep pushing the professionals otherwise we will get no way. Hope you feel better soon x

    • jo19531
      jo19531 SaiA

      Posted

      I've been under the consultant since my referral last August. I've actually seen her twice! Everything takes so long and ur just left in the same position trying to muddle thro it does get u down sad Ive been ill 20 yrs with a diagnosis of IBS! Was ur inflammation picked up on a stool sample of bloods? Mine was clear on bloods but high on still samples. Just keep pushing once u see the consultant cos they always seem keen to fob u off if they can sad x
    • SaiA
      SaiA jo19531

      Posted

      My hopes are with this consultant... I hope he starts of by doing tests to determine exactly what is wrong with me and if it is crohns or uc to give advice on treatment. Is this wishful thinking? I think the locum Doctor checked stool sample and bloods. Bloods showed high and doctor said that stool came as positive which concluded that more than likely I have ulcerative colitis (inflammatory bowel disease) they were her words and as you know they are not experts. O Jo you have been going through this for 20 years and I'm moaning after 3. My family push me to be persistent with doctors and on my recent visit my brother demanded to come with me. I didn't let him though. He was like the doctors needs an account of what we see and how this is affecting you :-(. Have you had a colonoscopy?
    • jo19531
      jo19531 SaiA

      Posted

      In the last 20 yrs I've been hospitalised several times but not followed up, had my appendix out for a sky high white cell count, yet my appendix wasn't infected and discharged with NO tests whatsoever. I've had 20 yrs of a v limited diet, my lowest weight has been 6st 12, I have cramps, diarrhea, sweats, extreme fatigue, joint pain and sudden bouts of vomiting. I've begged to be referred back over the years but kept getting told it was just IBS. My recent colonoscopy was clear but no surprise as I know my problem is in the small bowel. I know have malabsorption, I'm lactose, fructose and glucose intolerant and have SIBO! At least I'm FINALLY being taken seriously x
    • SaiA
      SaiA jo19531

      Posted

      That is a very long and painful journey. They sometimes see nothing in scans and just leave it at that. I am trying to cut lactose to see if that eases my symptoms. I had been drinking full fat milk to my weight back on but I felt as though it triggered my symptoms. So I am trying this out for now. I also get a very dry throat on a night which I'm not sure is related. Without any clear answer, your mind wanders everywhere 😒. The pressures in NHS don't help.
    • jo19531
      jo19531 SaiA

      Posted

      I agree totally and I can't see the NHS improving. I really do feel for the staff and their work loads, they mainly do an amazing job. Hopefully ur consultant will b on the ball and refer u for tests straight away. Try and stay positive. I was discharged in error 6wks ago and positively furious! I'm now back on track thankfully. Unfortunately crohns can b difficult to diagnose I'm told and I've certainly read that in a lot of cases sad With the lactose intol, I can eat low fat or Greek yogurt and chocolate and b fine, but if I drink any milk, eat cheese butter or cream or anything containing these I'm doubled up within 2 hrs and vomiting/crampy diarrhea. I can't even eat sweets with cream in, it's bizarre! X
    • Joyalb
      Joyalb jo19531

      Posted

      Inflammation was seen on CT scan also facael test but the stool test could also be used for high bacteria so a few scans are needed to clarify what is going on, could just be one patch of inflammation with scar tissue or several infected areas, once diagnosed it can be managed with drugs and hopefully go into remission, don't give up on the bus span as it relaxes the bowel, peppermint is not doing you any favours as its given for IBS!
    • Joyalb
      Joyalb jo19531

      Posted

      Colesevelam is a miracle drug for bile salt malabsorption, demand the pill not the powders, watery diarrhoea stops, you need to find the right dose, I take 2 pills daily some people take up to six, a harmless bile binder that I get from my consultant, google it, some areas won't prescribe it but some do freely, expensive drug but a miracle one I cannot go without now for my quality of life
  • jon1969
    jon1969 SaiA

    Posted

    Hi saia I was in your situation 20 years ago and eventually I was diagnosed with Crohns. We keep being told not to ring ambulances unless it's a stroke or heart attacks etc only ring if it's an emergency etc how about the drunks every Friday and Saturday night in every city in the UK ? Don't feel guilty next time you are in severe pain ring one you will then be in the system tell them you think you have a bowel disorder and you will more than likely have the tests you need a barium meal is what confirmed my Crohns buscopan just relaxes the stomach mussels and I never got any relef from it. If you need any more help please message me again jon
    • SaiA
      SaiA jon1969

      Posted

      Thanks Jon, I get your point about people turning up at A&E and I feel bad for thinking about it. It's true and next time that is exactly what I am going to do. I do feel that they can be patronising and just refer me to my GP 😒. For the past few days I have been taking a dose of two (buscopen) 2 to 3 times a day and I feel a bit better. I should be lucky that my main symptom is the severe stomach cramps. I just hope the specialsit knows what he is doing.

      Have any of you guys tried Cupping therapy?

    • Joyalb
      Joyalb SaiA

      Posted

      But this happened to me just last week! I was in awful pain, my husband took me straight to docs who prescribed steroids but told me to phone my IBD nurse or consultant ASAP it was bank holiday but the nurse rang me straight back and told me I should have gone to A&E or the nearest urgent care as the bowel could rupture, it is potentially life threatening. After all remember that Crohns is incurable and there is a benefit available as it is classed as a disability, don't feel guilty!
    • jon1969
      jon1969 Joyalb

      Posted

      Yeah always ring an ambulance or better still go through your out of hours service if you have one as you will be given an opposing meant to see a Dr and he can authorise you a bed on a ward of course it all depends on your pain level . When was Crohns classed as a disability? What benefit can be claimed ? Intrigued Jon
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