Please Help- Diagnosis Issues

Posted , 7 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi Everyone,

I have posted on here on several ocassions, after several hospital admissions I ended up going private. I am really concerened and worried so any advice would really be appreciated please.

As advised before I have now been out of work for nearly 4 months and it is looking like I am going to lose my job, I really am suffering with the following symptoms:

Distended Stomach

Diarrea several times a day especially after eating

Very bad nausea 

Sickness

Constant pain in lower right abdomen which gets worse after eating

Complete loss of appeite

Lost nearly 2 stone in 3 months

Very weak

Exhausted

Positive Calprotectin level 178

I have had so many tests done, colonscopy, endoscopy, mri, capsule endoscopy all back normal.

When I did the capsule endoscopy last week, the dummy (patency) capsule got stuck in my small bowel but after a failed CT scan, an invasive enema xray they felt it was low enough and safe enough for me to have the real capsule endoscopy, most people I have been told only wear the belt for 8 hours max and it passes the next day 2 days max, I had to wear th belt 14 hours as the capsule just stayed in my small bowel. It then took me 5 days to pass the real capsule and 3 days to pass the dummy one despite the huge amount of bowel prep I had to drink which made me very sick and vomit.

I have been told by my private GI consultant they want to repeat my stool sample to check the calprotecin levels again so I am handing this in today and then he said he will use that to decide what to do next possibly a laprascopy to look inside.

I am very concerened, 1smile what if the second stool sample comes back negative.

2) Will a laprascopy be the answer, are there any other tests?

3) The GI said stool sample is very accurate for picking up things e.g Crohns etc but surely wouldnt this have been detected in all the tests I have had done?

I am just sick of suffering, I feel constantly ill, in pain and can't lead a normal life I am just trapped at home and I am worried there will be nothing they can do to help me. I just don't know how I am suppose to live like this or work again when I have no treatement or medication.

I feel so down, thanks for listening and sorry for the essay.

Many Thanks xxx

0 likes, 8 replies

Report

8 Replies

  • Posted

    You're having a terrible time of it, I hope you get some answers soon.

    With all the tests they've done, they seemed to have ruled out Crohn's, etc and it is obviously worrying, but could it perhaps be something simple like your appendix? You seem to have those symptoms.

    Best of luck and keep us informed.

     

    Report
  • Posted

    I really feel for you. Getting a diagnosis is often a nightmare with Crohn's. Especially if it's in the last bit of the small intestine (the commonest place for it to be), the terminal ileum.

    From your symptoms it sounds like you have a blockage but whether that's down to Crohn's only the tests can reveal. Thing is, it's possible to have had active disease for many years without knowing and then you can end up with scar tissue that causes a blockage. So even if you have little inflammation as in active disease you can still have an obstruction caused by the disease.

    theres one test they may not have performed: a small bowel barium enema. It's pretty uncomfortable but very accurate at locating narrowing of the terminal ileum.

    A tube is passed up your nose, down into your throat and on into and passed your stomach. Barium is fed directly to your terminal ileum giving very clear, undiluted imaging with X-ray. Over the years this has been the only method of pinning down my Crohn's other than surgery.

    Hope that's of some help and I really hope you get some answers and some treatment soon

    Hannah

    Report
    • Posted

      Wow, you seem to know a lot. thanks for sharing your knowledge with us.I will remember this to tell my dr who asking me for a stool test to see if it getting worse. do you think in stool test it can show how worse it is in your teminal ileum. I doubt it it will but if you have been through stool test then you will know and it is expensive. I think the best is  colonoscopy with the camera but he did not suggest it to me. May be next year I will ask for it instead of colonoscopy. I hate  to drink that stuff but whant can we do? I hope they find another way reduce our sufferring.

       

      Report
  • Posted

    I am so sorry that, thou have Vern found through this. It is awful when you have done everything and, they can't find, anything. I went through this for years. I really felt like I was crazy and the Dr's thought I was. After every test in the book my Dr. did a capsule endoscopy they diagnosed me with Crohn's He put me on Humira it helped a ton I felt like I had my life back. Then about 2 months ago I started getting sick. So,I got another colonoscopy and blood work. It came back I had colitis and Lupus. That was a shock but at least I knew why I felt like total crap I would have your Dr. Some major blood work I would have them also test your Ana also to do a double-stranded DNA test. That is how they found out what was wrong with me. Good luck and let me know what they find out.

    M

    Report
    • Posted

      Stychsen, you poor thing - so have you got crohns in the small bowel, & colitis in the colon?

      Report
  • Posted

    Hi everyone thanks for all your kind support and advice it helps me so much.

    It's made me think a little bit out of the box and if like you say something else is going on like lupus or Addison's disease here's a full list of everything sorry some repeats some of the following conditions/symptoms I've had for years and never really thought it was related I have positive ana in my blood but it was never followed up by the doctors:

    . Underactive thyroid diagnosed about 6 years ago 100mg

    . Raynauds

    . Very low blood pressure

    . Extreme tiredness have to nap after work and struggle if I go out at weekends etc - cfs has been mentioned in past

    . Very bad dizziness if I move position

    . Fainting episodes if I get too hot

    . Positive Ana levels

    . Positive calprotectin

    . Painful joints especially elbows which crack loudly and lock up when moving about 15 plus times a day.

    . More recently I've had the following

    . Very poor appetite

    . Nausea

    . Weight loss nearly 2 stone in a few months

    . Diarrea especially after eating

    . Constant pain in lower right stomach and back

    . Irregular periods

    . Painful intercourse

    . Very thirsty during the night

    . Protein in urine

    . Low vitamin d levels

    I don't know what to do my doctors to be honest are pretty useless you never see the same one and always think you're crazy so if I ask them to do a blood test for lupus or Addison's I don't know if they will I just want to rule it out for sure.

    Thanks xxx

    Report
  • Posted

    Dear Laureate, i feel for you, i really do. I'm in a very similar position to you. I've been off work since mid may, firstly a week of gastritis, then a colitis flare followed & that's upto today. my calprotectin was recently tested - 280. they done a colonoscopy in july & removed a small polyp from ascending colon-all biopsies back within normal limits. while this is good news, the flip side is not - as I'm still suffering, off work sick, & virtually housebound due to my almost constant symptoms of lower abdo pain, frequent bowel movements, rectal pain, lack of appetite, daily diarrea, awful fatigue. I also have ibs-d(controlled with low residue diet, avoidance of trigger foods, & quality daily probiotic), fructose malabsorption (no fruit or fructose products), & bile acid malabsorption (controlled with prescription meds). Bile acid malabsorption produces similar symptoms to many bowel conditions & 1) i strongly recommend you get a sehcat scan to check for this as it's often overlooked & can be succesfully treated with ongoing meds. 2)The other thing i think you should do is ask for a repeat camera capsule as it really doesnt sound like the first one was successful - ask you consultant if the images were clear, as if it got stuck i wonder if that would've blurred the images thus not giving a true picture. i think the only other way to look at the small intestine is laparocopy but don't quote me on that. I don't know what your consultants like, but mines not very helpful - i have to research everything myself & put facts in front of him to make any "lightbulbs go on". i had to write him a stern letter following my colonoscopy results as he just left me in bloody limbo saying we'll "catch up" at your next appointment!!!! so what am i supposed to do until then? suffer & let my job become more jeopardised the longer i am unwell?? He responded quickly by phone & has agreed (following my request!) to retest me for coeliac disease (as that does produce raised calprotectin) & a contrast mri of small bowel as they have never looked at that entirely. providing the mri shows no narrowing or obstruction he will likely do a capsule camera pill. i had to put many facts in front of him in my letter justifying to him a few reasons that lead me to think there could now also be problems in my small bowel. he is nhs, & i know they have to follow protocol, but sometimes they just don't seem to think "well what else could it be, this patient is still unwell". There is a super informed lady on here called sanya, i hope she sees this post & gives you some advice too. Please take care Laureate, & let us know how things progress for you. xxx

    Report
  • Posted

    Hi L, I just read your message and wanted to make a suggestion for a possible.... reading your post was like reading my medical records. After a very long time and a vast amount of tests I have been found to have something called Gastroparesis. I hope to god you don't have it. It sounds very familiar is all. The test that finally diagnosed it was a ' gastric emptying test'. Fine if you like porridge. I hope you find the relief you are looking for. If you want to chat or need more information then please get in touch. All the best, Kellie xx

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

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