Worried about misdiagnosis

[elibr]

So im 16 and had my first colonoscopy to test for things like ibd and inflammation in my colon. on holiday i had xrays and ultrasounds where they found i had an inflamed colon and kidney stones. This problem has been going on for over a year and theyve only JUST started testing me. Ive been having diarrhoea, nausea, stomach cramping, bloodshot eyes i am contanty bloated as soon as ive eaten and get very gassy when i havent eaten. My stomach is always making strange noises and its embarrasing. My stools are usually loose and yellow and occasionally small hard and black. I have never really looked for blood and now that i am idont see any however i have really sticky like mucusy poo when its loose. On average i poo 4-5 times a day but have gone up to 12 times when its been bad. I havent really lost much weight and my blood tests were apparently normal however my faecal calprotectin was raised i think they said it was 141. I am feeling genuinely unwell most of the time with just colds and sore throats and really run down and my back, hips, wrists and shoulders are really achy and sore all the time. They said my colon was looking healthy today but theyve also taken biopsises which i am yet to hear of results as i only had the procedure today. Now i am worried that i am going to be diagnosed with IBS and i dont think i can continue with these symptoms, i geniuinely feel that it is likely i have IBD but nobody seems to be taking me seriously. I struggle living with these symptoms everyday and is it possible that nothing would show up since i havent had a flare up? My symptoms were somewhat calm this past week.

[Hobbits]

Hello, sounds like you are going through a lot right now, and not knowing can make one anxious.

It sounds like your doctors are doing everything they can to help you, from colonoscopy, x rays, calprotectin and ultrasound and biopsy. Waiting for results can be the worst part, but hopefully soon you will have answers. A lot of people take years and years to get a diagnosis as some symptoms can be related to various different issues.

If you have IBD the biopsy will show evidence whether you are in a flare or not. Keep plugging away at your doctors for answers but from reading how many tests they have done, it sounds like you have a good medical team working in your behalf to find out what is going on.

If you are diagnosed, treatment usually follows quite quickly to get symptoms under control.

[Angella51]

Hi there! First I am so sorry to hear you are going through this at your age. I’m 49 but have had these issues my entire life (every symptom you mentioned and more bleeding etc) and was diagnosed with Crohns when I was 26. I agree that you should be doing what you’re doing and go to the Drs but if there’s one thing I could share with someone your age who’s starting the aweful symptom, Doctor, anxiety, cycle it would be take control of anything and everything you can (diet etc). This sounds stupid, maybe over simplified but speaking with lots of experience (I was diagnosed with Crohns after hemorrhaging losing 1/2 the blood in my body and have a lifetime of Drs visits) DOCTORS ARE INCREDIBLY LIMITED with what they can do for these illnesses. I just had my umpteenth colonoscopy today, results Crohns has gone from moderate to severe and the Drs prescription = Prenisone. If you read these posts that’s usually the best Drs have, Steroids, biologics, and surgery. You can really do wonders experimenting with your diet (I can’t eat bread) and exercise. Exercise is the best for inflammation. And YES I get that you may be too sick to exercise now but do what you can. Sadly there just is no “cure” for these aweful illnesses. My biggest regret is letting my illness get this bad and while I know it’s not all my fault honestly I could’ve avoided certain foods, eaten smaller meals etc. Buy books or google fun fitness and nutrition it’s way better than prednisone and methotrexate (literally chemo) and the other autoimmune suppressants the Drs use. Best of luck to you and let me know if you have questions. Your Dr can test you for gluten sensitivity, get skin tests for allergies etc. 🙂 Angie~