Please Help- Diagnosis Issues

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.

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

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

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

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

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