No idea what I have had for 4ish years.

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Hey there. I'm a 20 year old female who seems to have been suffering with "something" for 4 years now. I've been apparently blood tested for chrones, hyperthyroidism and celiac disease which all came back negative. I often think I have some kind of IBD.

I have been to er 3 times in the past year and have been at least 5 times in the past 4 years. I was admitted in hospital twice out of those times and once for 5 days.

Most of the time when I go to the hospital I am in at least a ranking of 7/8 pain out of 10. I often can't move or walk without being in extreme pain along with often ending up laying in a pool of my own vomit before either deciding to go to the hospital due to the severity. Once I get there, they often press on my stomach (which often hurts like hell) and then after realising absolutely nothing helps, they give me morphine in which the pain goes away almost immediately. 

I have had 4 ultrasounds (have no idea why the NHS keeps giving me these after they turn up negative), an mri and a CT scan in feburary (ended up with pain and going to the er) which showed I had acute appendicitis. This also scares me. The same pain I had with the appendicitis was almost identical to that of when I have 'flare ups' and end up going to the ER. 

Every morning without fail, the moment I get woken up in the middle of the night (I often think it's from the pain) I need to stop laying flat (which makes it 100% worse) so I have to sit up or go to the bathroom, often where either black tarry poo comes out (this colour of poo 'black tarry' has ALWAYS come out, since I remember as a kid.) along with this black, often hard little rock lumps will be mucus. This mucus will often either be clear, see through with little streaks of brown inside (almost look like brown little worms/squiggles but obviously are not moving) or a yellow/brown colour with quite a lot of poop in. After I poo I often feel nauseous and will have to stay sitting up (laying down HURTS in my bowel area) These pains I would rate around a 5 and force me to get up. Often when I end up going to the bathroom I will only release gas though the pain makes me feel like something more is there. I used to have terrible wind as a child and would have to lay on my stomach as my mum would basically burp me and make it feel better.

I often get pain from eating about 20 minutes after. I don't eat as much as I used to, in fact, I way less than 90 pounds..... I eat less than a meal a day (mainly because I don't want to be in pain) and the hunger pain hurts terribly. I will poo out food that I have eaten for dinner, at around 2am/8am. Which seems a little fast to me. I also have very loud stomach rumbling that sometimes can keep my partner awake at night. 

I have been to see so many doctors in the uk and they all have no idea what I'm talking about. As if I'm mad. One doctor told me to eat more vegetables and that I probably have IBS, I did and ended up with even worse symptoms for doing so...

doctors in the US have previously prescribed me with dicyclomine which I often have to take double the dosage for when my pain gets really terrible. 

This problem has pretty much effected much of my life. I missed out going out with friends due to being scared of the pain, it's effected my school grades and also effects my partner when he wakes up pretty much every morning to no one there since I'm usually in the bathroom.

I have no idea what to do. I have emailed my GP several times and it almost seems like they are ignoring men they have consistently promised follow ups to an apparent gi specialist in cambridge. But after 4 years I don't think my follow up letter will ever come...

The pain is usually either on my left side, an inch from my belly button towards my thigh and an inch above my belly button, directly around my stomach area almost. The pain I get when laying down is often around an inch and a half lower than my belly button towards the genital area.

Any ideas? Would be most appreciated... Really finding it tough to deal with every day.

 

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  • Posted

    Gosh you are in a difficult way, I've not head of anything like this before, I did wonder if you had  been to see any private docotors or clinics in case they may be able to help, I know you have to pay, but in your case it'd be worth it, also possibly see some holistic people they may be able to offer you some thing of benefit for your system,

    I think it's very poor that no one has been able to give you a diagnosis as to what you've got.  Don't give up, go to your doctors surgery with a type written letter addressed to him, write on letter at bottom the word 'copy' in brackets it tells the doctor you are keeping a copy of what you wrote i.e. your serious about this no more waisted time, write on envelope 'delivered by hand' in capitals. Do not email anymore they can get 'lost' in the system also get used as an excuse re getting lost or went elswhere accidently (not). If you post anything, recorded delivery only.

    Contact all the Cambridge hospitals to find out the name of this gi specialist. He's in a hospital there somewhere. Put his name and address in your letter to the doctor, write to the gi specialist yourself

    or phone the hospital say you need to see the specilaist and why tell them about the doctors delay, they will likely tell you it has to be by referal only etc. then when you write your letter to doctor tell him you've contacted hospital on such and such a day and they explained about the referal and that you had to get back to your doctor immediately becasue it sounds quite serious what you've got and you should be refered immediately or something along those lines you get my jist,

     I know your doctor has to refer you but you cannot carry on like this, it's totally unacceptable. Would a private clinic refer you faster I wonder.  I wonder if you looked up gi specialist Cambridge hospital on the internet what might come up.  I'm afraid these days you have to do a lot of your own work to get what's needed. Don't let them faff about anymore. these are just some ideas I'd try if it was me Good luck

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  • Posted

    UR IN PROBABLY GASTRIC ULCER  THIS TYPE OF ULCER PAIN  PRESENT  AFTER TAKING FOOD AND U HV ANOTHER PROBLEM  Pelvic inflammatory disease (PID) THEY ALSO PRODUCE PAIN IN THIGH AND BACK ALSO                                                   MY OPINION; 1.AVOID STRESS DO YOGA 2.consult  gynaecology doctor R/O PID 3.TAKE PLENTY OF WATER FOR RELIVE ANY URINARY TRACK INFECTION 4.AVOID SPICY FOOD ,TEA COFFE 5.CONSULT UR gastroenterology DOCTOR AND GET FINAL diagnosis(GASTRIC ULCER OR IBD)
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  • Posted

    Hi there get an endoscopy and a colonoscopy done first black tarry poo does not seem right, my daughter had pain above naval and she had mild gastritis, she was tested for cealiac it came negative saw a nutionist put her on a FOB MAP diet, no wheat and milk  and certain fruis and vegies, for a month then introduced her towheat no issues thank god, milk though caused her to have pains distended stomach really bad, gassy feeling, seemed she wanted to burp and pass wind but had difficutly was constipated but was asked totake metamucil which held to open the bowels, now everytime she eats bups a lot, get your seld tested for H pylori you can do a breath test for that, hers came out negative.  Hope this helps Good luck,

    Heather

    PS:

    keep us posted please

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