How long did it take for you to get a UC/IBD diagnosis? (tmi?)

I've been ill for over a year now. My problems first started around April/May 2015 when I was being violently sick and having severe stomach pains. I was diagnosed with gastritis, given omeprazole and recovered (somewhat). The gastritis seemed to overlap with a sensitivity to wheat/gluten, dairy and eggs which I had to figure out myself by taking them out of my diet one-by-one. I was still being sick and dry-heaving every day (mostly in the mornings) which only stopped when the dairy had completely left my system, which took months. During this time I had a blood test that showed up negative for coeliac disease but I had already cut gluten and wheat out of my diet so it's possible that it was pointless and an endoscopy which came back clear.
I got better somewhat, I stopped being sick but was still experiencing diarrhea, acid reflux and pains in my stomach. The acid seemed to die down for reasons I can't explain but by January of this year I started bleeding when I went to the toilet. I didn't think much of it at first - Christmas had just passed and I tried to rationalise what was happening to me. By the third time experiencing blood (which terrified me), I decided it was probably time to bring up the subject and visit my doctor.
To cut a long story short I've had an endoscopy, sigmoidoscopy, stool test (before the blood), 2 blood tests and a pointless visit to a dietician (even she said there was nothing she could do and that I should be eating more, in fact) with no evidence of IBD.
I have experienced or experience every symptom of UC/IBD - I have diarrhea and/or mucus (sometimes with blood) during periods of illness (which are starting to become more frequent), horrendous cramping pains on my left side, burning pains, headaches, dizziness, no appetite and unintended weight loss.
My consultant (I live in the UK) is the head of his department in my local hospital and he refuses to listen to me. He originally put me on anti-depressants as an idea to block the pain but I've ended up on double the dosage because the last time I visited I cried the entire time. I explained during my last visit that it was cruel to expect me to live in such pain and he suggested that I have cognitive behavioural therapy - counselling.
I have a CT or MRI scan (unsure of the difference)and colonoscopy scheduled and I'm terrified they won't find anything. Has anyone else been through a similar experience where doctors try to say that you have IBS or just completely ignore how terrified you are? How long did it take before you were diagnosed? Thank you for taking the time to read my post, I wish good health to you all.

Post Edited (Lydia96) : 11/29/2016 3:11:13 PM (GMT-7)

Prior to diagnosis, I had blood in my stools that came on and then went away on it's own. This process repeated itself for about 6 months, with the episodes of blood lasting longer and longer, and the periods without becoming shorter and shorter until the bleeding was continuous. I kept telling myself it was nothing, it went away so no worries. What can I say I'm a pretty stubborn lol. I reluctantly saw my primary care physician about 4 months in who did a stool test that came back negative for pathogens and did not find any blood in my stool (really weird as I saw it). He said he'd give me a referral to a gastroenterologist, if I wanted and he warned me about a colonoscopy and an IBS diagnosis if "doctor couldn't find anything". I waited a few more months and then took him up on that offer of a referral (6 months in the blood is now continuous). The gastroenterologist gave me a office consult, did more stool tests, and scheduled a colonoscopy all within short order (everything done within a week). I was diagnosed with UC immediately after the colonoscopy, and given a pamphlet about UC and a prescription for Lialda and Rowasa enema. He said he was confident in what he saw in the colonoscopy and was sure the biopsies would confirm it. I had a followup office consultation a week or later when the biopsies were in, and they confirmed.

Agreed you should have a full colonoscopy and perhaps an examination of your small intestine. Blood in stool is usually cause to consider Inflammatory Bowel Disease but blood can also be caused by pathogeons and infections like c diff. So negative stool tests for infections, and biopsies are always key.

A typical case of Ulcerative Colitis always has rectal involvement and that flexible-sigmoidoscopy should have seen bad inflammation there, and the biopsy should have shown architecture changes within the cells (as cells living within an inflamed environment look weird, have thick cell walls, unusual gaps, the blood vessel pattern becomes erratic rather than uniform) as a result of a chronic, long-term illness. UC inflammation is continuous (distal in medical jargon) expanding from the rectum up the large intestine. UC inflammation is quite shallow in biospies.

Crohn's disease can be anywhere from mouth to anus, and often has involvement within the small intestine and the ileum (where the small intestine and large intestine join). If all you had was a flexible-sigmoidoscopy then there's no way Crohn's can be ruled out. A colonscopy would peak into the ileum and might provide good evidence of Crohn's. Often a small bowel followup with a radioactive dye and MRI type scan might be needed to look for inflammation within the small intestine in areas that the colonoscopy cannot see. As with UC, a crohn's biopsy would show architectural changes within the cells, and much deeper damage into the tissue. Crohn's inflammation is patchy (skip lesions in medical jargon), with inflamed areas followed by normal, followed by more inflamed areas. So, not seeing inflammation in your rectum or sigmoid colon accessible by the flex-sig is normal with Crohn's.

C diff, colitis, and SIBO are infections and overgrowths that cause the same exact symptoms as IBD does. You can have blood in stool, diarrhea, pain and urgency. They're treated by antibiotics.

And of course, there's blurry diagnosis like crohn's-colitis, indeterminate-colitis and a few others that are all IBD but beyond the scope of what I want to type now. All are less common but there's some here who have them.

It is odd the sigmoid scope did not see inflammation. If the colon scope does find it, but not at the rectum, that could point to CD.

But the elimination of pathogen causes and the pathology finding of deformed cells in biopsies is the only path to diagnosis.

good luck

I had a colon resection for diverticulitis in December. Biopsies showed no evidence of IBD. I actually saw the slide from the biopies. By April 1st I had a colonoscopy due to bleeding, diarrhea,
horrible pain and had UC.

I have spoken to my GP about this and she seemed reluctant and unsure if there was anyone else since he is supposed to be the head of the department for gastro in my local hospital but if the scan and colonoscopy show nothing I will try to persue this further. I was completely furious afterwards but at the time speechless and in tears. I think because I am only 20 he brushed me off, he even said 'young girls can suffer with problems like this' - I'm an adult!
I didn't find him very approachable anyway but after that incident I want to change doctors more than ever.

Sara14 said...
Wow -- can you get a new doctor? I'd be furious if someone suggested my symptoms were all in my head.

It took about 3-4 weeks for me to get a diagnosis. I went to three different doctors. The first said I probably had an anal fissure and told me to take stool softeners. The second said I had the stomach flu. The third listened to me and ran tests, and soon ordered a colonoscopy. I learned quickly to advocate for myself and be persistant.

It sounds like maybe you are getting a CT scan. I've had several. Quick, easy test. It will show if you have inflammation in your intestines.

Your consultant seems fairly competent (he's running all the right tests at least), but his people skills are obviously appalling. I'd wait to see what the MRI scan and colonoscopy show, and how your consultant handles the results. If you are still not happy with him, then consider changing hospitals. Your GP can refer you - hopefully you have a sympathetic GP on your side. A good consultant really does make all the difference; I reckon they set the tone for the rest of the staff as well. I've had crap consultants before (at my last hospital I literally never saw the consultant even once in 3 years - just junior docs, who kept changing every few months); it was probably no coincidence that the care was crap as well.

I've had a few MRI scans. For an MRI small bowel scan, they do inject dye to make the contrast show up better. Some people find the tunnel claustrophobic; I'm not sure why, as it's an open-ended tunnel and your head is at the very end of it - you can see out into the room. There's loud noises but you're given headphones with music to muffle them. At intervals you'll be asked to hold your breath for a few seconds. You're in there for about 20 minutes I think, but for me it felt like it was over after practically 5 minutes.

Never had any problems apart from one time when the prep made me nauseous. Instead of going away, it got worse, and I had serious problems with the holding my breath part. I almost, but not quite, made it to the end. I knew I couldn't hold on, so I sounded the buzzer and waved frantically for a bowl - I couldn't speak. Luckily one of the techs got my meaning and handed me into a bowel, into which I promptly threw up several times. They offered to stop the test, but like a champ I volunteered to go back inside to finish the scan.

That's pretty unlikely to happen to you. It's only happened to me once out of five or six MRI scans (I lose count, but I've had quite a few :/)