Newly diagnosed with UC

Posted , 6 users are following.

I'm a young girl (just turned 17) who was having bowel issues. Today I had a endoscopy and a colonoscopy. They told me that I had UC in my rectum. They said it was fairly mild (but enough to see inflammation and ulcers/puss -sorry for TMI) and sent me home with instructions to take 2 lialda pills in the morning and a suppository at night for two weeks. They took biopsies and said they would be back in a week (I don't know specifically what they are looking for.) They haven't said anything about a follow up appointment but would think that I would need one to talk about what going to happen in the future (well, more than two weeks.) I'm hoping that they will call or email about one, but I'm not positive. So my main question is, what's next? Did this happen to any of you in this way? Will I be on a lot of medication for a while? Any information would be great! Just a little confused about what my future will hold. Thanks!

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7 Replies

  • Posted

    U will have follow up appointment or possibly letter to gp from them who in turn will contact u. Hopefully ur meds will settle the symptoms . They check for cancer and that it is definetly uc from biopsies. I have it for 25 years and mine has been quite bothersome . I have taken a lot of meds over the years and just recently discovered a teaspoon lepicol with pre and probiotics (the one with the green band bought online or at holland and barrett ) and teaspoon of psyllium seeds from 'just ingredients ' online have left me symptom free of which I am very thankful. Wish someone had told me about it years ago and spared me the symptoms and ups and downs of this disease. Diet wise and everybody does differ avoid sugary foods, flavoured sweetened yogurts and drinks which have probiotics as sugar in it usually annoys ur gut. Wheat based products u may hav sensitivity to. Fruit bcos of fructose is usually a no no as is alcohol .i usually think a food diary is useful in early stages to check what ur personal triggers r. 
    • Posted

      Thanks for taking the time to reply! I will take what you said in account. Sorry that you have suffered for so long!
  • Posted

    It's impossible at this point to know where this may lead.  I was 25 when I was hospitalized with UC. I was really ill with bloody diarrhea.  After a few weeks I returned to work and started reading about UC.  I learned that it could be exacerbated by stress and may be triggered by stress as well (as it was in my case.

    I read a book on relaxation techniques and practiced it regularly.  It was simple.  I'd lie down, close my eyes, and over a fifteen minute period I'd almost chant to myself "relax your toes", "relax your toes" and try to do as what I was saying.  I would move on the ankles, feet, legs, knees etc.to the tops of my heads.  In my life I'd try to avoid stressful situations with family, work and wherever possible.  Throughout the day I'd try to think of relaxing, taking deep breaths and checking to see if my stomach muscles were relaxed.

    Now I'm sure I was lucky, but I largely remained symptom free for decades, although I'd have short periods of diarrhea.

    You might want to try that.  Also it's important to take charge of you situation, become educated and involved and find a doctor (should you need one) that's sympathetic and understanding and one you feel you can talk to.  Make sure that it feels like a partnership.

    Good luck and most importantly, don't despair, but act to try to help yourself.

    • Posted

      Thanks for taking the time to reply! Yes, I think keeping the stres down will be the hardest part for me since I'm a teenager in high school but I could try some more relaxing techniques when things get particularly stressful (finals.) I also dance and am hoping that could continue to be a way to relieve stress for me. So far all of my GI doctors have been great and listen and I'm hoping that I will be get a follow up appointment with someone who is understanding. I am also doing my own research so I can be informed. Thanks for the tips, I appreciate it!
    • Posted

      Hi Jujuella,first of all please don't panic ! Yes UC is or can be a nasty disease but with the right meds it can be largely controlled. Once this initial flare is under control you will probably need meds daily to keep you from flaring again. I was diagnosed with Proctosigmoiditis ( rectum plus a little more colon just round the bend) a year ago. This last year I have researched researched researched and tried to keep food diary( not the easiest) to see what upsets my tummy,causes pain etc. I am in a good place now,mentally and physically ,and find a lot of the advice on this forum helpful. You WILL start to feel better with the right meds and as my GI told me' you will lead a near normal life'. Good luck and let us know how you get on x
  • Posted

    Hey! I've just turned 17 too and ive had colitis since i was 2 years old, but ive got the kind thats everywhere in the bowel... -_- suuuuckkksss. Anyways yea  I guess I'm used to it, finding out at this age i probably wouldn't take it as well as you have! You cant let it bring you down! Or stop you from living your life! Your future is what you make it. From 13-15 i was in remission with no medication i felt like any other normal kid! That may happen to you and its the best feeling smile other times... you name a medication, I've been on it. -.- you'll be okay!! And there's is ways to control it other than medicine, like what food  you eat and stress. I hope you feel better soon!!!! :D 
  • Posted

    Hi, its tough hearing you have been diagnosed with UC.... there is no cure, but it can be managed, and hopefully you will gain remission, but even in remission you will need to take some form of medication to maintain that for life really.

    The most common triggers for people with UC are lactose intolerance, alcohol, and gluten intolerance, but everyone is different.   Its a good idea to keep a food journal for a couple of months, its a bore, but it will help you locate exactly what foods your body really cannot tolerate, I managed it for 6 weeks and it was helpful as I now have a clear idea of what I can and cannot eat, but really you do need to educate yourself on the disease, and there is so much information on the internet for that..with regard to your doctor, I would make an appointment to see him a few days before your suppositories run out, to renew and recieve the results of your biopsy, which will no doubt be a confirmation of the initial diagnosis...whilst you are flaring you will need to take suppositories as it is far better to treat "both ends" and once in remission you can take them less. 

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