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

My C-Diff to UC Story!

My name is Jason and I was diagnosed with Ulcerative Colitis in June of 2009. Earlier that year in February I had taken antibiotics which destroyed the healthy bacteria in my colon. I then developed a condition called CDIFF (Clostridium difficile). This was a very difficult thing to live with and had taken my doctors by surprise because it is not very common in people my age. After 4 months of treatment on numerous antibiotics the CDIFF was gone from my system. I was told by several doctors that the strain of CDIFF which I had been infected with was very aggressive and resistant to antibiotics. The medicine which ultimately killed the bacteria was vancomycin the strongest antibiotic you can be on outside the hospital. After 1 month of no symptoms from the CDIFF I was struck with horrible abdominal pains, extreme diarrhea, rectal bleeding and the constant urge to always go to the bathroom. I returned to my gastroenterologist to undergo my third colonoscopy to check if the CDIFF had returned. That was the day which has ever since changed my life. After the procedure I was talking with my doctor who had told me that I developed Ulcerative Colitis and he believed it was from the CDIFF infection that I had been dealing with for the past 4 months. It has now been 15 months since I was diagnosed with this disease and still have no signs of a normal life. On a near constant basis I am dealing with stomach pains, loss of appetite, diarrhea, the sudden urge to use the bathroom, weight loss and headaches from the medicine. In 15 months I have tried numerous courses of medicine and still haven’t found anything which will work for me. This condition has almost become impossible to live with, but I try so hard to lead a somewhat normal life. I have explored several options for this disease but as every doctor will tell you there is no cure for Ulcerative Colitis all you can do manage the disease. I will say, one of the hardest things about living with UC is having to explain to the people around you what you are going through. For the average person they can’t understand the feeling you have when you get an attack, when you must use the bathroom, when you have stomach cramps so bad you need to lay down. Part of my life is now planning where the bathroom is, and when people around you don’t understand it makes it very stressful to deal with. This emotionally takes a toll on you because you have to come to deal with all the symptoms, all the medications, the change in diet and the people around you not understanding what you are going through. The medications that I am currently on are Asacol to treat the colitis, Spacol to treat the cramps and inflammation of the colon and Tequin to treat the infection which comes and goes inside my GI track. I will say besides my family I have two very important people in my life which are very supportive to my condition and very understanding which makes me very comfortable when I experiencing what I call an attack. I hope that in time, like most people with UC it will go in remission and I then can get off all the medicine which I am on now. But for the time being I am just trying to lead a somewhat normal life, deal with my symptoms and manage my medications.
submit your ulcerative colitis story and questions here just like Jason did

Information about the Ulcerative Colitis Diet called SCD which stands for the Specific Carbohydrate Diet




c-diff

7 Responses to My C-Diff to UC Story!

  1. love December 19, 2010 at 2:48 pm #

    Hi Jason, try to be positive, believe in me, we are all at the same position.. And i can understand what you are feeling.. This disease can be really hard to live a normal life.. But i hope you will find the right medicines for you then will be fine again ;) Maybe you should see another GI doctors so they might find right treatments for you. Try to avoiding stress i know this is though but you have to. Don’t forget, you are not alone.. Your only option isn’t Asacol, there are another medicines like prednisone, Imuran, Remicade, i think you should research those things..If nothings gonna change maybe surgery..Maybe you should be careful about your diet. Just makes time but i’m sure you will be fine at the end =)

  2. Adam
    Adam December 20, 2010 at 9:14 pm #

    Hey Jason, what’s up man!
    Yo, I had two bouts of nasty C-diff as well this time two years ago. It was absolutely horrible indeed. It felt like someone was grabbing my colon and ringing it out like a wet towel. I can definitely remember those horrible abdominal pains, and man was I thankful for the vancomyicin too. For me, it came back a second time as its mighty hard to get c-diff under control form some patients, but eventually flagyl knocked it out completely.
    Hang in there. Love above has got a pretty good idea if its possible for you, to maybe just check in with another GI doc for another opinion on treatment options. There is nothing wrong with that, definitely no shame in seeking out other opinions. I know for a fact that when doctors themselves need medical attention, they are known to get several “second” or “third opinions” .Take care and don’t trip, this UC is nasty, but its also possible to get the upper hand on it.

  3. Jenn November 14, 2012 at 5:58 pm #

    I was diagnosed with UC over ten years ago. It was never a problem and was under control with lialda. then i got walking penumonia and was put on so many antibiotics that the uc flared. my GI doctor had me started on different medications for the uc but after 5 months nothing was improving and then he had me tested for C-diff. it was positive and i started a course of treatment with flagyl which eventually cleared my C-diff but the UC got worse. I have been on various treatments for the uc since 2008. I am now on remicade since July and it is finally making a difference. I am getting my strength back and the prednisone levels are being reduced gradually. When I had such a bad flare in September of 2011, i was put on 40mg. I was working a reduced workday until eventually i came off it. Thank God because i developed eye problems and some hearing problems. the eye problems eventually cleared up but i still have a problem with my hearing, which the specialist can’t pinpoint what it is but it is like a pressure feeling that comes and goes ; similar to one you get when taking off on a flight. It is hard to accept this disease and even harder to admit to others that i have it, especially coworkers.
    I try not to overdo things since that makes me feel worse. I take probiotics and a good multivitamin, B12, B complex, vitamin d & e and l-glutamine, and i watch what i eat. Would love to supplement calcium but it always seems to give me a problem. I also tried a naturopathic doctor but did not feel enough benefits to stave off undergoing the remicade infusions. Probably because I should have tried it sooner. keep trying different remedies, eventually you may find what works for you with some trial and error.(i still keep a notebook on how i feel and when)

  4. Melissa January 30, 2013 at 6:11 pm #

    Jason, I have a story to tell, but it will have to come another time as I have not the strength to write it this particular evening. ENTOCORT EC is the only thing that helps me. I am only saying it helps me. I am so very sorry you are sick and wish you healing and understanding.

  5. Cheryl February 13, 2014 at 9:56 am #

    I can relate to your feelings about dealing with co-workers reactions while dealing with this disease. The worst experience I had was the six years I was a federal govt employee, at OPM, no doubt. I ended up being let go and was treated horribly even as I called in from my hospital bed. Senior staff gossiped mercilessly that I wasnt even ill, overlooking my 18 day hospital stay I guess. I was also on Vancomyacin and flagyl, and clydendomycim(sp?), I believe I also developed C-Diff, but still feel unsure about exactly what it is, besides being extremely painful and debilitating.

  6. Gina July 4, 2015 at 6:25 pm #

    I was diagnosed with UC 9 months ago. I was hospitalized for 3 days and was given Flagyl even though I tested negative for Cdiff. I was also put on prednisone and Lialda for maintenance. Recently I started to have symptoms again so my doctor gave me Uceris. The symptoms got worse so I stopped the Uceris and went to my GI again and I tested positive for cdiff. I immediately was placed on Flagyl for 14 days. My symptoms have been relieved and i am down to 2 or 3 bowell movements a day and they are not the urgent kind. I am prayerfully hopefully that the flagyl is working. When you are going thru the treatment it’s difficult or impossible to tell if your symptoms are caused by the UC, the cdiff, or the antibiotic. Something a pharmacist told me, that my doc didn’t mention, is that cdiff is very hard to kill on surfaces so you have to be very diligent in sanitizing your home and yourself. I believe the reason people are reinfected is because the are coming in contact with surfaces that they themselves have contaminated. Regular disinfectants, like Lysol, don’t help. You have to use a bleach solution. After each bowell movement, it is important to spray the toilet bowl with the solution including the handle and any other surface, like the handle or sink, that you have touched. I also have added a bleach cleaner that automatically dispenses when the toilet is flushed. Also, most important is to wash your hands after each bathroom trip and before eating at least 20 seconds with warm soapy water. Rinse thoroughly and dry with a disposable towel. I am also reading that pets can carry cdiff but show no symptoms so be very careful when handling them and disposing of their waste. I am especially concerned because my kitty has been known to drink toilet water! So I use rubber gloves followed by a good hand washing after changing his litter and even after playing with her. Cdiff can live on surfaces for a very long time so it’s important to disinfect with the bleach solution thoroughly and I suggest for at least a month after you’re diagnosed. I hope this helps somebody. I would never have known how powerful and long-lived this bacteria is if I hadn’t talked to a pharmacist and then took it upon myself to research it more.

  7. me August 7, 2017 at 12:09 pm #

    I know everyone is different and will respond differently to all medicines, but what really worked for me was remicade. I was very hesitant to try it because of the possible side effects, but it has really turned my UC around. I went through the most horrible pain I can imagine for 2 months, and being in and out of the hospital, so I just had to do something. Now, I can eat whatever I want, I have no more bleeding, almost no pain, bathroom trips only 2-4 times a day (rather than 20-30), and am participating in cheerleadinf at my school. You’re probably much better now, but anyone in this situation–talk with your GI about remicade! It’s just been extremely helpful to me. As of a couple weeks ago, my only medicines are apriso and remicade, along with some supplements.

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