Ulcerative Colitis Tips


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Newbie Asks What to Expect with Ulcerative Colitis

john ulcerative colitis

John was diagnosed with ulcerative colitis in 2012

A bit about John:

I am a 47 year old man returning to college for a Masters Degree in Psych, married with no children, and a new puppy that I will train to be a therapy dog to visit patients in nursing homes, hospitals, and aid in learning disability.

Symptoms:

bloody stool, cramps, frequency, fatigue, body aches, lower back pain and muscle spasm, and a very dry red scaly patch on my right hand.

John’s Colitis Story:

I suffered for months in early 2012 with my symptoms because I thought they were related to antibiotics I was prescribed for 3 sinus infections over 4 months. When I finally sought the Doctor’s help, I was miserable. He thought I had C-diff because of the antibiotics, ordered lab work with stool samples, and prescribed Flagyl. The stool sample came back negative for C-diff, so he sent me to a GI specialist. The GI did a Flexible Sigmoidoscopy two days later and confirmed Ulcerative Colitis. I was so happy to have a diagnosis and begin treatment. The GI prescribed Hydro Cortisone enemas daily. I have been on them for 2 and a half weeks with about 35 % relief of symptoms. I see him on Monday for my 3 week check up after the Flex Sig.

My Questions Are:

How long should I expect to wait for significant relief using the Cort enemas?

Does the dry Red scaly patch on my hand have anything to do with UC?

Is it possible that my low back pain is also a symptom of UC or other Auto Immune Disease?

My Doctor is very kind, and I trust him completely. I do plan to ask him the questions I have written here, but feel that I need feedback from those who share my disease.

I am most concerned with loss of freedom. I missed a family funeral because I am in a bad flare, and it hurt me deeply to have to stay home running to the toilet instead of grieving with my family for the loss of a loved one. I am headed into a Master’s level program in late August and that will entail 3 and 1/2 hour classes. I hate using public rest rooms. I feel that I will just have to get used to rest rooms and suck it up to keep my freedom. Thanks for all the info shared here on the website.

All the Best John in Pa.

Where I’d like to be in 1 year:

Remission, or at least better educated on how to best live with a flare.
Colitis Medications:
New to meds and using Cort Enemas daily for 16 days. So far about 35% relief, but still passing blood and having frequency, fatigue, and cramps.

written by John

submitted in the colitis venting area



Cort enemas, Flexible Sigmoidoscopy

12 Responses to Newbie Asks What to Expect with Ulcerative Colitis

  1. Stephanie P
    Stephanie June 23, 2012 at 10:58 pm #

    Hey John!

    I did the Cort enemas on and off for a few months, with periods of relief with no symptoms, right back to 10+ times a day and bloody in between. I eventually switched doctors because I moved and then stopped the enemas. Every person is totally different, so I can only offer my experience. I did a few more enemas when I moved again, but eventually told my doctor I was done with them, as they became painful to me, and in my opinion were simply not effective as a long term solution.

    With switching doctors 3 times in a year, I was always put on steroids, as enemas or orally rather quickly to stop the flares, which eventually lead to me becoming steroid dependent. I am mentioning this because I did not know how harmful and hard on the body steroids can be over a long period of time, no one told me, not even the doctors that seemed to ‘click’ with me and understand and talk with me. I would definitely talk to the doctor about the side effects of steroids and what happens when you are on them for a long time, as well as weaning off of them too fast. And other options as well, I currently take Pentasa orally, but have recently started taking it as a suppository as well, and it is working for me, a non-steroid option for those dependent on the ‘roids.

    With all of that said, I hope others’ stories on here give you hope and encouragement, as it is very possible and realistic to live a healthy, happy life with UC. People miss life events due to all sorts of things, and you need to remember this is a learning process that can be slow. I have made many mistakes along the way, but you will learn what works for your body and what doesn’t… Good luck and hop on the probiotics train!

    • John in PA
      John in Pa June 24, 2012 at 9:43 am #

      Hi Stephanie, Thanks for the reply. I am seeing the GI Doc tomorrow. He is planning to keep me on the cort enemas for 90 days total, and I think replace them with a non-steroid enema, something that begins with “M”. LOL. I will ask him some questions. This site is very encouraging and I am super happy to have the benefit of other’s experiences.

      John

  2. Stephanie P
    Stephanie June 23, 2012 at 10:59 pm #

    I forgot to mention, I get lower back and side pains when I am flaring, I think it is UC related. Nothing seems to give relief to it either! Arg!

  3. Johnny Drama
    JohnnyDrama June 23, 2012 at 11:18 pm #

    Hey John,
    Johnny Drama here,
    Thats pretty badass that your training a little puppy to make peoples life better. Right on!!!
    SO you got this evil disease we call UC, well weclome to the club man. You found one hell of a website.
    I myself have UC and also took flagly before I was diagnosed. I feel the antibiotics made my symptoms way worse, but my main cause of the symptoms was from pain killers for my wisdom teeth extraction.
    It sounds like you arent quite seeing the results that you want, 35% is better than 0%,but if you want your freedom you have to get rid of that flare and get yourself into remission. How many bowel movements do you have a day currently? Your super new to this disease and I was too at one time. I myself am in school, currently going full time, work part time, do a few odd jobs on the side, so I want my freedom to do what I want with out worrying about shitting my pants or running to the shitter 15 times. Im actually taking chemistry right now and we have long ass labs, 4 hour labs man!! WE HAVE TO GO TO EVERY LAB AND IF WE DONT WE FAIL,so I definitely dont take any day for granted and listen to my body. First off what kind of diet are you on man? Dont tell me your eating fast food or drinkin booze? You need to try to swtich up your diet John. The diet doesnt work for everyone, but it sure as hell works for alot of people. Im on the SCD diet, I also take some medications which I will start reducing here next month! Im not sure about the patchy hand, it could be from UC, or could be from the enemas your on. Having UC can cause alot of different things its linked to mouth sores and much more. I do experience back pain, but I always seemed to have it, although it does seem to be worse now.
    I see your taking thoes enemas,I took Canasa rectal suppositories the first two weeks of diagnoses. Im note sure how close these things are? They do seem to help, but not something I recommend long term. I had some bad side affects from them. I eneded up using some more back in march for some bloody stools I was having, but all meds have their side affects.
    Hope for the best!
    JD

    • John in PA
      John in Pa June 24, 2012 at 9:51 am #

      I am having about 6-12 BM’s a day currently. I do notice that it fluctuates according to stress levels. I was doing much better and then we had a crisis that brought more bm’s and cramps. I do my best to deal and I will get better over time. I try to take some time every day and just do simple calming meditation and positive thought, that helps too. I am certainly not eating fast food because that stuff is poison. I cook for myself and my wife and enjoy fresh veggies and meat from the local Amish farmer’s market. The meat is raised without growth hormone and the veggies are so good! I have been adding the Green smoothies to my diet as well. I have been cutting down on potatoes, but see that rice actually helps. I use Basmati rice and it really does me good. I shun seeds and deseed tomatoes and cuc’s.

      Our pup is a great positive in all of this. My wife’s dad has alzheimers and he brightens up with pets. That is how we came to want to raise the pup for therapy. I know he helps me just by being near, so other folks and kids will feel better too :0)

      Thanks again JohnnyDrama

  4. Maggie June 24, 2012 at 7:20 am #

    Hi, John in PA. Sorry you have UC, but I agree, it’s good to get a diagnosis and not have to worry it’s cancer. About the time of my diagnosis I was also dx with psoriatic arthritis and way prior to that I got psoriasis, it’s all related. That’s probably what that red scaly, itchy patch on your hand is. There are excellent creams for psoriasis out there so make sure you give them a try. I mostly get it in my scalp but have had a couple flares on my torso, not pretty, but managable. Best of luck to you, John.

    • John in PA
      John in Pa June 24, 2012 at 9:56 am #

      Thanks for the kind reply Maggie. I will mention the scaly patch to the Doc. Do you take any pain meds? I ask because I use Vicodin from time to time when my back pain gets bad. I have trouble sleeping and it has been bad lately. I get about 3 hours at night with some short 30 minute naps during the day. The pain wakes me and I have to move to different positions to alleviate it. I do see a Chiro, but at the beginning of this flare his manipulations squeezed some poop out of me and I don’t want that to happen again. Right now I have a wait it out and do my best attitude.

      All the best,
      John

  5. Johnny Drama
    JohnnyDrama June 24, 2012 at 2:29 pm #

    John, great to hear your eating healthy. You gotta get rid of that bad gut bacteria. I hope for the best man. I dont advice any type of pain killers. I swear thoes dont mix well with UC. Its very common for people that dont have UC to have bowel movement problems with that stuff.After my colonoscopy I was prescribe sulfasalazin and a dozen pain killers, I was so pissed they gave me pain killers. I just couldnt believe they wanted me to take thoes, knowing thats what caused the problem, and will only make it worse. Everyone is differnt though, pain causes stress. Stress isnt good for UC one bit. I know you got alot of pain man, I dont know what to say. Unfortunately in PA you cant get a medicinal card,but that would be my choice for back pain if I was you. I will chose marijuana over pain killers any second. I will never take pain killers again!

    • John in PA
      John in Pa July 13, 2012 at 5:37 am #

      I agree that medical marijuana would be a better option for controlling and managing pain. but alas in Pa we are still in the dark ages on that front.

  6. Justin
    Justin July 1, 2012 at 12:37 am #

    Hey john, sorry to hear your woes man. I was just recently diagnosed so I’m still learning as well but I agree with jhonnydrama 100% about the pain killers. When I left the hospital they gave me a prescription for oxycodone, prednisone, and asacol. and for the first few days at home I had no symptom improvement. I stopped taking the pain pills and within a day noticed improvement with the bm’s. I too am having back pain but it didn’t start til I started the steroids. Was your back hurting before the meds?

  7. Kasey July 3, 2012 at 7:52 pm #

    Hello,
    I’m Kasey and I’m 11 years old. Im currently doing the cort anemas right now. The enemas got me out of the hospital last month (I still had to stay for 5 days though) You should be happy with your doctor that he gave you that option.:)

  8. John in PA
    John in Pa July 13, 2012 at 5:42 am #

    Does anyone see a Rheumatologiost? I am making an appointment to see my Doc next week to address some symptoms and ask about seeing Rheumy Doc. My colitis is improving, less frequency and better quality poops. I do have some fatigue, joint and muscle pain that is rather challenging to deal with. Sleeping is another issue. I get between 3-5 hours a night. At times throughout the day I become so fatigued and it feels like I am made of lead, a heaviness in my body and limbs. My mind becomes foggy and it is difficult to concentrate.

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