How were you diagnosed with Ulcerative Colitis?

Posted , 3 users are following.

I'm sure you've answered it a million times on here, but I wanted to know: How long you've suffered with symptoms before actually telling a doctor?

Did you ever seek out a second opinion if necessary? Did you find it beneficial?

How long have you had UC?

What method was used in your final diagnosis of UC - as in when did they finally see it and tell you that's what it actually was?(colonoscopy, x-ray, ct scan, etc)

Were you ever incorrectly diagnosed with another disease before UC? If yes, what was it?

Any other input you have would be useful. I find myself looking and looking everywhere online for answers, but I know that will only lead to more confusion. I'm in the middle of trying to find the answer as to what is going on with me, with my GI. I've had a colonoscopy done last September that showed Diverticulitis and a benign growth. Had recurrent symptoms, including blood in stool, so she had me try antibiotics again thinking it was Diverticulitis again. That seemed to make the symptoms subside for about 3-4 weeks. They came back again, and I decided to just do a liquid diet, and try to fix it on my own so I wouldn't keep taking antibiotics. I expressed this concern to my doctor, and she agreed she didn't want to keep doing that as well. So she ordered a CT Scan, which came up clear and an x-ray of my upper GI(small bowel series) that was done yesterday. She said during my recent appointment with her that my symptoms sounded like UC, and that it could have been in remission when I had my colonoscopy done. I was hoping someone else's story might provide some insight. I don't know what it is, but I'd like to start getting better. 

Thanks

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  • Posted

    Hi, my son was diagnosed with colonoscopy and bloods. He was indefinite IBD for some time but an expert analysis of bloods said definitely UC.At first he had bloody stools for a few days, saw doc and said go away and see if goes away, it did and all was well. After a year it came back, abdo pain, mucous and blood in stools, weight loss. GP said maybe irrittable bowel disease but sent for colonoscopy to check. Said was UC but later another Cons said Crohns. Long story, would definitely recommend go to experts in UK, St Marks London or John Radcliffe Oxford. My son finally went to JRO and told sure was UC. He had had an ileostomy as perforted in colon at local hosp. Now he has a j pouch and no disease, very happy with life. He was unlucky as he didn't get under meds control, about one third, we are told go to severe and need surgery for UC. The Crohns and Colitis charity is informative and the face book page has many people to share advice and tell stories. You need to be selective about what you read, there are some scary stories out there. Read up about low residue diet and also Infliximab. Second opinions are important. A journo wrote my son's story online as he was unfortunate to develop a DVT after he was discharged after surgery. You can find it if you search, DVT wont play sport again.

    We have a friend whose son, 15, has just been diagnosed with UC. He has had 3 lots of Infliximab, antibiotics and will soon be taking " good gut bacteria" in medical tablet form. The last one worth asking about. 

    We would have got an expert second opinion if we had known how quickly he was to deteriorate. Three months from UC diagnosis to surgery.  Patients vary in their disease and their response to meds and the Consultants try different combinations of drugs & doses. Ask questions and take care. If you become v unwell go in to hosp & go on drips as very difficult to absorb meds if on a bad flare. Some people are medicated and cope very well. 

    Good luck. Sheila.

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    • Posted

      Thank you for your story Sheila. I'm hoping to get answers soon. I will post an update once I hear back from my GI to see what she found if anything. I appreciate you sharing your story. Every bit of information helps. I will say, it takes a bit to check into a hospital in the states. My colonoscopy, that included removal of a very small benign polyp came to around $12,000. Not including the fee for the doctor to perform it - $690. Her office visits are $200 each time. My bills are starting to rack up. My recent CT Scan that didn't end up showing anything was $1300. I don't know what the x-ray will be. A doctor did step in to watch me swallow the initial dose of barium for my small bowel series, so I'm sure that will add $1,000 to the bill easily. Anyways, I'm ranting. Thank you for your help.

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    • Posted

      Darn sounds expensive, I forget sometimes this is an international site. I hope you find some answers soon. The low residue diet option is worth a try. Let us know how you get on. Sheila. 
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  • Posted

    Personally I have had UC, I believe, since I was about the age of 18 or 19 (Living in Canada at the time). It all started with abdominal pain and I was given the Barium drink with a stomach x-ray. I was then sent for a colonoscopy and then told by a specialist after the colonoscopy that there was nothing and I just needed to eat more fiber. I did not heed the specialists admonition as I thought it was something more and you could say I lived without a diagnoses till I was 29 as it was minor, I thought. I off and on had loose stools and needing to use restroom a lot with abdominal pain. When I moved to the states this continued and eventually the urgency to use the restroom and the amount of times using the restroom increased as well as blood now showing up in my loose stool. I then went to my primary care physician who said he believed it was UC and wanted to send me to a GI specialist to confirm. I provide a sample of my stool, as well as blood work and a colonoscopy in April of 2015 confirmed that I had UC. I have not gotten a second opinion, but have had 2 flare ups. One in Feb and am currently in a flare up that has lasted about 3 weeks now. When I was diagnosed in 2015 I was put on Apriso as a permanent med and Prednisone for 8 weeks to help my body recover and go into remission. I was in remission from April of 2015 to Feb 2016, when I had to admit myself to the hospital due to abdominal pain waking me up every 2-3 hours during sleep. I was put on prednisone a higher does this time for a week. The current flare up I started seeing blood in my stools again, mixed with abdominal pain as well when I pass gas I pass mucousy colored liquid. GI specialist put me on Uceris for 2 months. Still seeing blood, but it seems that it may be tapering off. Abdominal pain and urgency dont seem to be though. 
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