Not sure if this is the right place to post this, but here goes………………
First off, I don’t have UC myself. It is my girlfriend who has recently been diagnosed with it. My main reason for posting here is to try and get some information and to make myself feel better! I have been very worried about her and this condition especially seeing as I didn’t know anything about it until a few weeks ago.
So she had what is probably the symptoms of UC for a couple of months. She told me about having blood in the stool around January time. This was the only symptom and she had no pain/abdominal cramps or even have to ‘go’ that much. We both thought it might just be some constipation combined with the stress of University exams. Everything stayed pretty much the same until about a month ago. A couple of our friends got sick for a few days with a stomach bug. Feeling sick/not eating etc. My girlfriend seemed to have these symptoms as well, but unlike everyone else the symptoms didn’t go away after a few days. She would have stomach aches and frequent trips to the toilet. Sometimes once or twice in the night.
At this point we thought it would be best to see a doctor. The doctor scheduled an examination by a gastro doctor. The doctor had a ‘look’ with a small camera and said eveything seemed quite normal, but there is some blood present so scheulded and endoscopy. The endoscopy showed some ulcers and inflammation so the doctor put her on 40mg of predinsolone tapering down after 1 week. The doctor said it’s most likely UC, but defintely not a surgery case.
So here come the questions……. haha
For starters, I have been very worried about the Prednisolone. I am wondering when any side effects might start appearing with 40mg tapered over 8 weeks. She has only been taking it for about 5 days. I have read about increased appetite and weight gain, but not so worried about this as she has lost so much the last month or so. I just don’t want her to be on Steroids again because of the effects it can have long term. Is there medication that can be used instead that does the trick?
I have also been wondering about possible flare ups. The doctor told her that some people have a flare of UC and never get one again, while some people have serious cases which may require surgery. Do the flare ups get worse over time? Or are they related to how the UC starts? She has been quite ill in the last month, but its not been too serious and is mainly just have to use the bathroom every few hours, sometimes in the night with stomach aches and has lost about 12lbs because of no appetite. If her flare ups were like this then it wouldn’t be so bad, but I have read about people going into hospital for flare ups every year. Her doctor seems to think she will be fine on this other med to take long term after the steroids. Oh and are the flare ups something that happens often?
Sorry if this is asking too much and is a lot to read. I know I don’t have UC myself, but I have been with my girl for quite some time and have been very worried about all of this because of it being a long-term illness.
Anything anyone can help with my questions would be great. Just trying to learn a bit about UC so I can be supportive and maybe stop worrying about it so much! I think im more concerned than she is, haha!
(Thanks Anonymous poster for sending this in. Very kind of you to be so concerned for your girl! You have some great questions. The reality with this disease which I’ve been diagnosed with for just about two years, is that everyone’s case can be quite different. So, answers can vary to the questions you have, but either way, you got some GREAT questions. Here are a few answers based off my experience: As for the side effects from the steroids, I noticed some insomnia right after starting steroids. I would have a hard time falling asleep, and usually walking around like a zombie in our apartment in the wee hours of the night. This went away once I stopped taking the medications. As for flare ups and potential severity, that is really unique per person. So far, I have had one mini flare since getting over what I call my first flare. What I mean is, when I was diagnosed, I was severe. That severe “flare” lasted for months and months. Once I finally got that under control and it went away, I have had one mini flare since then. The mini flare was some blood, not so cool bowel movement formations, but required no medications to get out of it.
Again, I hope others will comment with answers to your questions, you have some great ones. And, for sure everyone’s usually got a varying degree of severity, and varying answers to a bunch of your awesome questions. -Adam)
All of the posts from “Annonymous UC” are from ulcerative colitis people who anonymously submitted stories or Doctor Reviews, medication, supplement reviews etc… I post all these stories to the site, but they’re different from my own personal stories so hopefully this account makes more sense:) -Adam – founder of iHaveUC.com