My Girlfriend was diagnosed with UC, Help Please



Hello!

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.

(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)


aches, blood, endoscopy, flare, girlfriend, predinsolone, stool, symptoms, UC

9 Responses to My Girlfriend was diagnosed with UC, Help Please

  1. Vicki Thomas July 20, 2010 at 8:10 am #

    Wow – what excellent questions. Funny since just one year ago I and my husband were asking the exact same questions. As Adam says, this disease is 100 per cent individual. Some people have only one or two flares ever. Others seem to be constantly in and out of flares. Unfortunately because the disease is so individual it is hard to tell you what to expect. I have never been on Prednisone, I’m taking Budesonide (another steroid) and I’m experiencing no side effects from this medicine. I’m in my second major flare in a year now. But it is important to know I was in remission for seven months between these flares… I think the best thing for you to do is to keep posting your questions here and as well visit the Crohn’s and Colitis Foundation of America web site – excellent forums on this site from which I have learned a lot. If you’d like some suggestions on books that are useful – let me know. Remember that you and your girlfriend are not alone – there are lots of us out here that can help you do don’t be shy. We’ve all gone through it and now how you feel.
    cheers,
    vicki

  2. Amy July 20, 2010 at 9:33 am #

    Hi
    I am also a person suffering w/ U.C., and yes every ones symptoms can be very different! I first started suffering when planning my wedding and quit smoking all at the same time! (Dr.’s say there is a link between tobacco and U.C., Dr.’s have tried patches to see if it relieves symptoms and flare ups with U.C. and to no avail yet) I started off having blood in my stool with frequent bathroom trips, it started affecting my work ethic because I wasn’t getting things accomplished! I pushed off going to the Dr. for about 2 yrs when I found out I was pregnant! Then my symptoms got much worse, then is when I decided to see a Dr.! Since I was prego there wasn’t many meds I could use, I did however use Imodium until I delivered, using up to 12 Imodium a day at one point! So after seeing the dr. he put me on Prednisone, this med is ok short term but long term can do alot of damage! affects your liver, kidneys, not to mention you can get very depressed, weight gain! i was on prednisone for almost 4 yrs, and gained 30 lbs! Always remember if you don’t like the dr.’s advice there’s always another one out there! I have had 5 Dr. in the 13 yrs I have suffered with U.C. and tried many meds including Colozal, I am now on a I.V. therapy 1×3 months and a a med called imuran to keep me from rejecting the I.V. med called Remicade. It has kept me in remission for 3 yrs, when otherwise I would have a flare-up at least once a yr that would take 3 months to straighten out! Just a little F.Y.I. also hard candy peppermint will relieve that bloated, crampy feeling in your stomach after having a bowel movement! Hope this helps!

  3. Melanie Bryant July 20, 2010 at 12:52 pm #

    Sorry to hear about your girlfriend, I always feel bad when new people are burdened with this disease. Like Adam said everyone is different I have been in a flare for about a year trying different drug therapies it is a pain in the butt (excuse the pun! lol) The main side effect from the steroids that I have had ( I am on prednisone as well) is the appetite and weight gain and moon face. I hope this helps and hang in there and I think it’s great you are so supportive as that is the main thing she needs is to not feel alone and have someone to talk to about her illness! Kudos to you!
    Mel

  4. Adam August 1, 2010 at 7:13 pm #

    My wife just started to use Remicade. It has been about 3 weeks from the first treatment, 1 week from her second treatment and she has seen minimum changes. Did Remicade take a while to kick in for you? Everyone we talk to said it was pretty immediate.

    Regards,
    Adam

  5. Zach October 21, 2010 at 9:28 am #

    Hi my girlfriend also has UC and its really really bad. Night after night she makes anywhere from 3-6 bathroom trips and comes back in pain. I don’t know what to do. She has no medical insurance because she can’t work full time because of this disease. we’ve tried to get governement help. it just seems like nothings works. shes been on those steroid meds for a year now and nothing seems to be helping at all. it just breaks my heart to see her in pain everyday and i can’t do anything about it. is there anything i can do? I can only watch her cry for so much longer before i force her to the hospital which would cost her a fortune. help please!!!!

  6. richard October 25, 2010 at 3:27 pm #

    hi mate, my girlfriend or ex as it is now has uc and is not taken it very well hence why she broke up with me, i really dont know how to be there for her when shes pushing everybody away did ur gf ever feel like this? i care for her alot a want to support her. my sister has uc and crohns so am familiar with the symtoms etc. i just dont want her to feel like shes on her own. we had plans to get wed next year so its all a shock any advice would be brill thanks

    • Adam October 25, 2010 at 4:21 pm #

      Hey Richard,
      First off, you are a stand up act for sure!!
      We need more people like you on this planet for darn sure.
      Since I’m the one with UC, I can’t totally relate to your current situation, but I can say that I know I was acting very strangely(and I am pretty sure my wife would say I still do from time to time) after I was diagnosed with UC. For sure much of what I said to people was me talking out of my mind(quite possibly steroid/depression/not knowing what was going on related etc…). But sure enough, after some time, I did come around. Of course I don’t know if your girlfriend was recently diagnosed or if it was a long time ago…. My advice would be to get her a “Breaking the Vicious Cycle” book if she hasn’t read it already. It talks about the diet that I follow which got me better and off medications etc… Its a hard diet to follow for most people, but it can work.
      Either way, I wish you two the best, especially you for being such a good person and looking out for someone with UC! Best of luck! -Adam

      • richard October 26, 2010 at 12:26 am #

        thanks adam, she was diagnosed back in august of this year so everything is still new to her with the meds etc, i will look out for that book cheers.

  7. John Doe May 5, 2014 at 12:54 am #

    You are a good man. I respect those who dive in head first when the one they love is ill. I wish you two the absolute best in life. God Bless

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