iHaveUC.com's FREE email list, Join over 15,000 other subscribers

Ulcerative Colitis Diagnosed at Age 73 After C diff Post Op

I am very active (usually), have written and published a non-fiction book, love to play duplicate bridge, have completed a couple of marathons in my mid-fifties…..and hope for a great and productive future. But I am really scared about what may lie ahead. I lose sleep over seeing myself lying in a bed in a nursing home, wearing diapers and longing for the time when my life was normal. I will do anything to keep that nightmare from coming true.

Symptoms:

No longer any blood, but still urgency and frequency….and unpredictability. As with everyone out there, I know where all bathrooms are located. I still have to cancel some plans at the last minute and have missed events important to me because they required travel.

Diagnosed at Age 73

I am a 73 year old female who had no GI problems until I had a knee replacement last June. Post-op I developed a hospital acquired C diff infection. For a variety of reasons that are confusing to explain and reflect poorly on the current medical system, the C diff was undiagnosed for about 4 months during which time I was essentially housebound and making 20 or more trips to the bathroom every day. I am not a drama queen type of person, but I would literally sit on the toilet crying and telling myself “This is just not normal”.

The C-diff was diagnosed in Oct and I was treated with initially Flagyl and predisone and then, after a consult by an infection control specialist, I was treated with Vancomycin. I then had a negative stool test, but the symptoms, including bleeding and weight loss, persisted. I was sure that I had cancer. Finally, in December, I had a colonoscopy which confirmed the diagnosis of UC. The gastroenterologist tried to convince me that there was no link between the C diff and the UC, but there is no other logical conclusion.

I have read everything I can get my hands on to understand this disease. Mostly I have learned that it is a disease of young people and that it tends to run in families, so I meet neither of those risk factors. I am very interested in hearing from people who were diagnosed later in life….and particularly anyone who had C diff followed by UC.

During my 40 years working as a registered nurse I have worked with people who have Crohn’s or UC, a couple of whom were employees in the department I directed. Looking back, I don’t believe that I provided what they needed because of my lack of knowledge about this disease. Now I am reading the stories of young people and getting encouragement from them. Thanks to everyone for sharing your stories and being so supportive.

Medications Tried So Far:

Predisone, worked well to control the bleeding but not the disease. Also it caused
my blood pressure to go to 200+/120+, so now I am taking blood pressure meds morning and evening. I have taken Balzalizide 9 per day for six months with improvement but not remission. No side effects from the med.

written by Shari S

submitted in the colitis venting area




c-diff

15 Responses to Ulcerative Colitis Diagnosed at Age 73 After C diff Post Op

  1. Adam
    Adam June 21, 2016 at 9:53 am #

    Hi Shari,

    Thank you so much for sharing your story:)

    Sounds like you are a big reader, have you had a chance yet to check out the PubMed website which has a MASSIVE list of studies that have been conducted?

    THere was a story that I thought you might want to check out, I simply typed in “clostrodium difficile colitis” and a very long list of studies popped up. here was a link to one study you might want to peep through:

    http://www.ncbi.nlm.nih.gov/pubmed/25599768

    It is titled this: Clostridium difficile infection and inflammatory bowel disease.

    Best to you,

    Adam

  2. Susan B
    SusanB June 21, 2016 at 3:43 pm #

    Hi, Shari —
    It’s true. There arn’t very many of us that have been diagnosed later in life. I was diagnosed at age 63, but had symptoms for decades that were usually diagnosed as IBS. Looking back, it was pretty clear I had UC symptoms all along, but it wasn’t until I started bleeding that I was taken seriously. I was unable to control my symptoms with meds, and had my colon removed earlier this year at age 65. Frankly, it’s the best decision I ever made, but it’s not one to make lightly, especially as we age. I’m sorry I can’t answer your questions re: C Diff, as I never had that problem. But I completely understand your frustration, and struggled with finding answers myself. This is a great site for finding support and solutions. Best of Luck to you.

  3. Jeanne June 21, 2016 at 4:31 pm #

    Hi Shari, I’m 70 and was diagnosed with UC when I was 50. Everything was under control until Feb of 2015. It came back with a vengeance. I had to have my colon and rectum removed. Sounds horrible and it was but I am her to tell you I have my life back. I go out to dinner, movies, theatre, beach, golf etc. No more pain, no more meds, no more staying at home and worrying. It is a last ditch cure to be sure and I am only telling you this to let you know if worse comes to worse there is a choice. As we say in the ostomy world ‘better a bag than a box’..

  4. maddy June 21, 2016 at 5:44 pm #

    Are you using probiotics to help? You did not mention that they are part of the regimen that you are/were on (—and not within two hours of) any antibiotic you took/take to combat the negative effects. I am 71 and was diagnosed with UC after having been on cholesterol lowering drugs for a very short period of time. I also had c. diff many years ago after taking Augmentin. It’s no great secret that a bad experience with a medication can plant the seed for IBD to follow.To quote my g.i. doctor, in causing the UC I now have: The c. diff planted the gun and the statins pulled the trigger. I described the hows and whys to use probiotics as they were explained to me 20 years ago by the 5th g.i. doctor I saw. Since my first IBD flare in 2011, I’ve relied on specific probiotics to balance my gut. I described my experience in detail in answer to another woman who wrote in the Venting Area on this neat UC site. Everything I read also says bone broth, aloe vera, etc. etc. are helpful. There is a lot of good material out there for studying. I share you fears. I freak when I have a bad day. I eat one thing that I learn doesn’t agree with me and it takes 3 days to recover. I fall apart emotionally on the first day, thinking I’m going to be worse again. UC sucks big time! Best of luck to you in your healing process. Keep reading, perhaps we can come up with a cure!

  5. Ravi S Pandey June 21, 2016 at 6:01 pm #

    There are two things which are common between you and me—–I was diagnosed as a case of UC at 60 years of age and am a voracious reader ( own about 5000 medical books and 5000 non medical ones).
    1) C diff and UC are unrelated but it is too much of a coincidence to suffer from both sequentially.Perhaps C diff occurred because you were given broad spectrum antibiotics after knee surgery
    2)Unless you give a more precise diagnosis ( UC is an imprecise diagnosis) like ulcerative proctitis( best prognosis) ulcerative proctosigmoiditis( good prognosis) colitis (OK prognosis) Pancolitis( bad prognosis) pancolitis with backlash ileitis( poor prognosis) it will be difficult to help—–the prognosis refers to prognosis for the given episode.
    3) If you have proctitis or proctosigmoisitis, talk to your doctor about mesalamine enema and suppositories——you may be surprised with the results.You do not lose any thing and I have found them to cause remission in large number of cases. Balsalazide and mesalamine orally are excellent but they have limited local action in rectum and sigmoid colon because of short duration of contact. In proctocolitis mesalamine suppositories and enema have been found to be more effective than local steroids but are underutilised in USA..
    Wishing you best of luck
    Addendum—-C diff causes pseudomembranous colitis which resembles ulcerative colitis—–it cannot cause ulcerative colitis. However you will get large no. of patient self reports on Google where patients have suffered from C diff followed by ulcerative colitis

  6. Phil S. June 21, 2016 at 6:52 pm #

    You will find that individual body chemistry seems to be a key factor in UC…….. Because what seems to work for one doesn’t for another.

    I never had GI problems. Diagnosed with UC in Jan. 2010.
    Was on 5-6 different meds. till June 2012. Terrible flares . Nothing worked.
    Went on Remicade in June 2012.
    Complete remission so far.

    • Phil S. June 21, 2016 at 6:54 pm #

      Meant to list my age — 67 at time of diagnosis

  7. Ravi S Pandey June 21, 2016 at 9:35 pm #

    The two commonest age when ulcerative colitis first manifests are 15 to 30 years and 60 to 80 years

  8. Jo June 22, 2016 at 9:39 am #

    Sorry you are going through this tough time. I am 65 years old and was diagnosed with UC at age 60. I had a “clean” colonoscopy (my brother had colon cancer so we get checked regularly), and 2 1/2 months later I had bleeding, rounds of antibiotics, and eventually was diagnosed with ulcerative colitis. After five years of medication, many scopes, four 28 day hospitalizations, changing my diet, exercise programs, meditation, yoga, multiple second opinions, my colon was removed January 2016.
    20 days into my first hospitalization I was diagnosed with C diff” which was treated with rounds of anabiotic’s and Vanco. I have never had it again.
    Before all this began I was healthy, physically active, with a great social life with friends and family. Now after five years of prednisone and every medication you see on this UC website I know have severe osteoporosis with compression fractures. Prednisone works great to get rid of the flares, but it does a heck of a lot of damage within one’s body. I am no longer on any medication but I am dealing with a stoma and pouches for the rest of my life, which is much better than all the medication, constantly searching for bathrooms due to the blood, mucus, diarrhea, and feeling weak and sick. This is a big step and there’s no turning back. I encourage you to do what Adam said, do much research on the illness, keep your own records, get frequent lab tests to check on your calcium, vitamin D, vitamin D, etc. levels.
    Please consider what others have said that everybody’s body is different, some medications work great for some people but for others not at all. The specific carbohydrate diet works great for some people, aloe vera, olive oil, and many other things were great for other people. I hope someday that there is a cure, and lots of preventative options before the disease even hits anyone.

  9. k June 23, 2016 at 6:40 pm #

    Hello Shari,
    I have never had Cdiff nor did I get uc as an older person – but we share one thing in common. I am also 73.
    I was diagnosed with uc when I was 32 during my first major flare, and immediately hospitalized. Three days later the crisis came and my colon was taken out a few hours later. So I have had an ileostomy for 41 years now.
    How anyone lives with uc is beyond me. It takes more physical and emotional courage than I would ever have had. I consider myself fortunate to have been cured so quickly.
    Please don’t think your future might be a nursing home and diapers. Many people do well with the drugs of today, and an ileostomy really is a new beginning for many of us.
    I wish you all the best as you move forward.

  10. Ravi S Pandey June 23, 2016 at 8:18 pm #

    Being optimistic is one of the most important aspect of fighting UC——the others being—medicines,dietary changes exercise.and other lifestyle modifications.

  11. Maddy June 24, 2016 at 5:40 pm #

    Thank you, all for such thoughtful, helpful, and supportive comments.

  12. Gina June 26, 2016 at 10:34 am #

    Hello. I was also diagnosed later in life. At age 58 after going through days of bleeding, cramping, urgency, and dehydration I was admitted to hospital and diagnosed. I didn’t have c-diff at the time, but was later found to have it and was treated with Flagyll and Vancomycin. I often wonder if I didn’t have c-diff from the beginning and the tests were wrong. I can relate to the anxiety you are having. I was so unsure of my future that I required counseling, anti depressants, and anti anxiety meds. I was afraid to go anywhere and often backed out of invitations. It was getting so bad that people were beginning to stop inviting me to functions. I finally decided that was no way to live and started enjoying life again. I also realized that the anxiety I was feeling actually made the symptoms worse. So, now I travel, I go out to dinner, I exercise, I garden, I go go movies, I shop like crazy…. I enjoy my life! I still take precautions, but the disease doesn’t rule my life like it did when first diagnosed. It takes time though. You may want to talk to your doctor about anti depressants. It’s not something you’ll need forever but just long enough to get you back to “normal”. I am also pretty spiritual, so prayer and faith help me a lot! Don’t give up and don’t listen to all the horror stories. concentrate on what’s good and put the negative behind you as much as possible. Also…get as much sunlight as you can and look into supplements (omega 3, circumin, etc) that will keep you in remission. It’ll get better!!

  13. Ben July 21, 2016 at 4:33 pm #

    I clearly understand every ones pain who has posted here. I had UC symptoms also and some of the worst abdominal pains imaginable. Blood Tests revealed that my Amalaze levels were off the charts indicating Pancreas issues. A CT scan revealed that all of my ducts were enlarged and the initial diagnosis was Pancreatitis. I was a heavy drinker at the time so the prognosis was to immediately abstain from ALL alcohol and dietary and exercise life style changes. NO GOOD. Stopped drinking and was getting worse. Then a EUS revealed a Tumor dangerously close to my Pancreas. Cancer, even though ALL Biopsy’s were negative. I live on the East Coast and was referred to the absolute BEST GI and Oncology Surgeons available. Their remedy was to be a Wipple Surgery which would cure, remove the Tumor and everything else in my GI track too.

    I absolutely refused to believe my diagnosis even though I had already lost over 50 ponds in 6 months. I completely went on a vegetarian diet and 500 Calorie Protein Shakes for the weight loss. Lots of exercise, walks and most of all meditation and prayer.I was able to stick to this regimen as I work in IT and am able to permanently work from home. About a month later ALL symptoms were gone and I was scheduled for Surgery a few days later. I told my doctors I felt better and I wanted to be completely re-tested. They told me it was a waste of time and not to be foolish and take this very very seriously. Well to show miracles do happen they re-tested me the same day as the surgery and as they were prepping me My Gastro Doc came running in and said cancel the Surgery. The Tumor is completely gone and that my ducts were 90 percent normalized. The doctors were flabbergasted and the nurses started crying.

    There was NO other explanation for it but me truly believing in my mind that I was NOT sick and of course the lifestyle, meditation and prayer. There is always hope.

  14. Polly
    Polly August 8, 2016 at 5:29 am #

    I highly highly recommend this probiotic: http://www.professionalsupplementcenter.com/Saccharomyces-Boulardii-by-Ortho-Molecular.htm?
    SACCHAROMYCES BOULARDII is the only probiotic effective against C Diff, but also, it will cut down on the number of trips you take to the bathroom everyday. I had an extremely severe case of C Diff last year that lasted for months, and Saccharomyces Boulardii gave me some of my life back — I was able to leave the house and when it was time for me to go back to work, I was able to do that too.
    I have now been C Diff free for over a year, but I am still taking Saccharomyces Boulardii daily in addition to my other probiotics

Leave a Reply