Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Twenty One and Sick of Being Sick

Hi! My name is Ann and I am a 21 year old junior in college majoring in education from the Philadelphia area. I was diagnosed with UC two years ago.

Some more about me:

I am a down to earth girl who loves to have fun, I love just hanging out with my friends and laughing but also love dancing at the bars with them. My family is a huge part of my life and I rely on them constantly. I love summer barbeques and sports. I played sports all my life and love watching them too.

Symptoms:

Currently I am just about two weeks out of the hospital. I contracted c diff which sent me into a nasty flare. I was in the hospital for two weeks and it was terrible. I had upper right side pain constantly, was going to the bathroom with the stupid iv pole every hour, was not sleeping at all, and developed terrible ulcers in the back of my throat. Now that I am home I am suffering from some anxiety coming off bu time pain killers. I have trouble sleeping at night. Some days I am in the bathroom twenty times a day with diarrhea others it is better. I have lower abdominal pain when going to the bathroom and experience some nausea here and there.

21 And Sick of Being Sick

I was diagnosed with UC my spring semester of my freshman year of college, fun. Having this disease in a dorm room setting where your room is farthest from the communal bathrooms was not the most ideal situation.

When first diagnosed I was put on lialda and it did calm my symptoms until I saw my GI again and she did not like that I was in the bathroom at least seven times a day. So for a year we tried every pill out there and I was on and off prednisone.  While on prednisone I always felt better. I got through my sophomore year and that summer my inflammation was getting worse. We decided to try Remicade, with high hopes I went through three rounds and no relief.

So of August last year I started Humira and Imuran. For some reason I am not a fan of Imuran but since Remicade did not work on its own my GI insisted I take it. Humira gave me relief and I went back to school to start my junior year. Until in October I was hit with c diff. I was taking vancomycin but had no relief. I was so sick, fevers everyday, not making it to the bathroom, stopping in every bathroom on the way to class it was terrible. Because of the fevers I was not able to take humira so that also didn’t help my case. I came home and spent five days in the hospital.

The c diff sent me into a flare up but with rest prednisone and taking in protein I was able to gain my strength and nourishment back. I returned to school for the spring semester and was doing very well, cooking all my own food and my symptoms were mostly under control.

But then I got c diff AGAIN. I knew something was wrong so I came home right away a week later I was back in the hospital terribly sick. I stayed there for two miserable weeks, the first was the worst I don’t really remember it, it was all a blur with surgical teams and so many other doctors coming in.

I came home and am now considering what to do going forward. I am still completely wiped out from the hospital and have again come home from school. My immune system is suppressed from the humira so the c diff hitting me twice is really my problem. I am looking with a stool transplant procedure that apparently will completely prevent c diff from occurring in the future.

I would hate to have surgery but it looks like that might be an option. As a 21 year old it is not ideal to have one of those bags attached to me. I am really looking for people to talk to that have had this surgery.

For my diet I avoid dairy, fried foods, raw veggies and fruits, nuts. I basically eat chicken, rice, pasta, soup, potatoes, I cook with lactose free cheese and milk as well. My goal is to get off the heavy drugs and have my life back. I am tired of UC holding me back from experiences I should be having as a college student.

I know one day I will not feel like this but right now it is hard to picture that day. I don’t really have anyone to talk to with my condition so finding someone to talk to would be wonderful.

written by Ann G

submitted in the colitis venting area




7 Responses to Twenty One and Sick of Being Sick

  1. Adam
    Adam May 15, 2014 at 7:03 pm #

    Hi Ann,

    I hope you can get the c-diff to go to sleep for good. You might want to read the Q&A session we did here on the site recently with two doctors who know alot about fecal transplants and C-diff.

    Here’s the link: http://www.ihaveuc.com/fecal-microbiota-transplant-questions-and-answers/

  2. Ann May 16, 2014 at 7:05 am #

    Since writing this post I have gone through a fecal transplant and have felt relief. I stopped taking humira after the transplant and am only on 60 mg of prednisone. My symptoms now are about 6 bms a day and only getting up twice during the night instead of every hour. I’m currently looking into acupuncture, herbs and teas to treat my UC. I’m so done with the heavy meds.

    • Emily June 3, 2014 at 6:08 pm #

      Hi Ann,
      I’ve never posted to anyone but I figured I would because your story is so similar to mine. I was diagnosed my junior year of college, even though I was having symptoms long before that and did not know what to do. It is no fun going through this in college- when all you want to do is be able to go out with your friends and not worry about how you’re going to feel the next day. I ended up in the hospital for about five days, embarrassed to have to explain to my friends what I had been hiding or so long. I went on prednisone, suffered the awful puffy face, felt great, then felt awful when I went off it. I just started remicade and felt great after the first two two doses but felt no relief from the third. I’m not sure how the rest is going to go but know you aren’t alone. If you’re anything like me you’ll hide everything as much as you can, but it’s nice to you I’m not the only one going through college with this kind of weight on me. I’m sick of being sick too!! (Even though I’m 22 now)

      -E

  3. bev May 16, 2014 at 1:33 pm #

    I would have the surgery before putting any more of those nasty meds into my body. I just can’t ever go back on meds.
    Just my opinion!

  4. Mary May 16, 2014 at 3:28 pm #

    Hi Ann, hopefully you are finished with the c-diff issue. Now the ulcerative colitis. My son has been in a terrible flare for the last couple of months. For six months last year he achieved remission after struggling with medications which made him worse since his diagnosis at 16 years (he is now 22). He has tried Mesalamines and doctor put him on 6 mp . On the same day last year I suggested he try a combination that has helped Bev, being astaxanthin, good probiotic (vsl#3) and l glutamine. Well within the first week things improved and by a month he was living his life again.! My husband went away to a wedding in Vancouver and he stopped the supplements entirely, believing they were not the reason for his remission. He struggled and kept running back to his GI for help and more drugs and prednisine and nothing has helped. A month ago after begging him to listen to me before his GI puts him on a clinical trial with a horrible combination of drugs, he succumbed to trying the trio again. 1 scoop l glutamine, astaxanthin and probiotic, still not doing well (still taking 15mg pred and 50mg 6mp which have proven they do nothing for him) But, four days ago, I asked if he wouldn’t mind taking
    3 scoops of glutamine at bedtime as well and for 3 days he said his bm’s are solid again, cramping is minimal, gas and bleeding gone.
    Also, today he is starting accupuncture, so I will let you know what he thinks. He is scheduled to see Prof borody in 2 weeks (who is an expert on FMTs). I made this appointment a year ago and it is because of this appointment he did not go on the clinical trial. I hope he never goes back to his existing GI.
    Anyway, try lots alternatives and give them a go. He also has stopped alcohol, pretty hard for a uni student!

    Also, Bev, thank you! My son would not be able enjoy his beautiful life and he would not be able to study and build his career without you – you have stayed on this site and helped many sufferers. Also, Vancouver is one of the prettiest places I have visited!

    • bev May 17, 2014 at 6:50 am #

      Mary…these incidents like yours bring me to tears…the problem with stopping the probiotics, L-glutamine, etc, when they are working is that when you go back on them, they often don’t work in that dosage and you must ‘up’ the dosage for quite awhile. I don’t know why that happens, but based on what occurs with the meds, I suppose it’s because UC sort of ‘figures’ things out because it’s a nasty little so and so…

      Thank you for thanking me…like I said…I am so overjoyed when what I am doing works for others…I never miss taking what works for me and I never stop taking it. Talk that son of yours into it. Make him read this post. When something natural IS working, you must stay the course, no matter how good you feel! UC is ALWAYS lurking…just waiting to rear it’s ugly head. Perhaps your son will believe that now that this has all happened to him?

      Cheers, and hang in there. Keep taking a higher dose of what worked in the past. You WILL get back to living a normal’ life again. Persistence…

      :)

  5. Mary May 17, 2014 at 5:50 pm #

    Thanks Bev. I will certainly encourage him to never stop taking the supplements – although he doesn’t like me interfering. At the moment vsl is out of stock here in Australia and he ran out today – just when things are picking up! . you know my sister was diagnosed with proctitis (exactly the same as my son) when she was 21 and in those days Mesalamines and the nasty meds of today were not prescribed. She went into remission, but her colitis resurfaced again when she was pregnant with her daughter at 40. The only thing she used after the pregnancy was a steroid enema for a few months and has been in remission for the last 22 years! My child was prescribed the toxic meds which have given him a life of hell and worsened his condition to pancolitis – this has truly upset me.

    Ann, I hope you get some ideas and learn from other people’s experiences. I believe if the meds cause problems, then listen to your body. Try and find the cause of your condition ie food allergies, vitamin deficiency eg vitamin d, zinc . Extra Virgin olive oil is another great option to try (read Graham’s posts) and look at wild oregano oil.

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