New to the Disease, Tired of it Already

Introduction:

35 yr old Male, diagnosed with Ulcerative Colitis in January 2012. Under control with presdisone and asacol until October 2012. Currently in 6 month flare, progressively worse in the last 2 weeks.

Some more about me:

Father of four (aged 7 and under), partner in my own business and travel a lot. I am a firm believer that stress has A LOT to do with flares given a very stressful time in October 2012 and at the end of March which has compounded my current flare.

My Colitis Symptoms:

Pretty standard, multiple loose BMs x day with bleeding, abdominal pain, joint pain (prob due to being on prednisone for 6 months). Since I started taking 6MP sometimes when I take my meds I get dry heaves at the same time as I am on the throne, can’t decide which side it is going to come out of.

BMs are worse at night and morning. Can’t seem to make it through the night without a few (like clockwork at 2 and 4 a.m.). Usually 3-5 events before I leave in the morning.

New to the Disease

I feel like I have always had a “nervous stomach”. As a kid I would be in an unfamiliar place, get nervous, stomach acids get churning and I end up in the bathroom.

Fast forward to October 2011 and I cannot pick a single event that would have started the flare but nonetheless, it started. Colonscopy in January 2012 confirmed UC. Given prednisone (40mg) to stop flare and asacol to maintain. Felt OK until October 2012. Had a very stressful event and flare came back with avengence. Back on prednisone (40mg) with no luck. Follow up colonoscopy in January 2013 actually showed improvement since prior year, now inflammation limited to descending colon. Now we are trying 6MP, prednisone and asacol HD to try and get this flare under control.

I am a partner in my business and travel a lot (car and air) to meet clients. I have learned lots of ways to deal with travel days and client lunches but in the back of my mind the fear an unexpected bathroom emergency is always there. I have explained the situation to many of my coworkers because they need to understand why I am not the first guy to the office like I used to be (I plan for a minimum of 2 hours from when I wake before I even plan to leave the house to account for morning BMs which are the most frequent and severe). Everywhere I go the first thing I do is locate the bathroom and actually go in to check it out to make sure it is suitable (# of stalls, doors on stalls, etc.).

I had been trying SCD since Feb and it worked pretty good until the last few weeks with the most severe flare. Nothing seems to work. Thought maybe it was the flu so I went with the BRAT diet, no luck and actually I think my body reacted even more negatively by introducing carbs again. I honestly have no idea what to eat anymore.

Now that it is getting warmer I am getting concerned that I won’t be able to get this thing under control and it will affect my work activities (golf is one of my major ways of interacting with clients but there aren’t many bathrooms with easy access on the golf course). Also have annual fishing trips, guys weekends, etc. where we spend lots of time out on the lake (again not a lot of bathrooms nearby). But I need to stop worrying about it because, again, I think stress is a big reason why flares hang around.

Since I am just over year into this I want to believe it is going to get better but I remain somewhat pessimistic.

Medications & Supplements:

For UC – 50mg Prednisone, 100mg 6MP, 1600mg Asacol HD 3x/day, 80 billion Ultimate Flora probiotic, 15g L-glutamine (thanks Bev this seems to help), 3000mg Vitamin D, 1500 mg Calcium, Multivitamin, Fish oil, B-complex

Also have anxiety and ADD so I take 10mg of Lexapro and 54mg Concerta daily

written by Kevin

submitted in the colitis venting area




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16 Responses to New to the Disease, Tired of it Already

  1. Ronnie April 17, 2013 at 12:09 pm #

    Awww Kevin, so sorry to hear that you’re having a hard time. It’s true that when its bad it’s a really dark place to be in but hang in there, this too shall pass…
    You seem to be taking all the right vitamins, I would suggest trying a more alkaline diet, you can google the list of foods. That seemed to work for me.
    Good luck xx

  2. Graham from England
    Graham lee April 17, 2013 at 12:47 pm #

    Kevin,
    Have you tried real EVOO yet, natural and not too difficult to carry around on your travels? 360 comments and counting…
    https://www.ihaveuc.com/olive-oil-is-helping-my-ulcerative-colitis/comment-page-1/#comments

  3. bev April 17, 2013 at 3:29 pm #

    Hi Kevin,

    So happy to hear that you are taking the probiotic and L-glut…maybe throw in the EVOO that Graham touts. You never know.

    You are on an awful lot of stuff…you know that asacol made my symptoms worse at the end of my stint on it… I’m just saying….it can exacerbate UC symptoms…it’s like all of a sudden, it can work against the very thing you are trying to ‘cure’. It’s like an allergic reaction, and it can happen all of a sudden. I was pout on the highest dose because of a very bad flare…the worst ever actually…I just went off of mine cold turkey while taking the probiotic…and within days, all those nasty symptoms…especially the urgency, looseness, and amount of times, disappeared…

    It will not hurt you to stop asacol, no matter what anyone says.

    :)

  4. Jessica
    Jessica April 17, 2013 at 3:45 pm #

    Hi Kevin,
    I completely agree with Bev regarding the Asacol. Worked for me for years, then all of a sudden was the source of my flare! As soon as I stopped taking it, the flare stopped. I couldn’t believe the meds I was taking to help me were actually poisoning my body. I am now allergic/have a severe reaction to all ASA meds. It’s something to consider.

    On occasion, I think it is okay to take Imodium to keep things in control. My Dr. just told me that I could take one a day (I am a teacher and cannot constantly leave to go to the bathroom at work). Although not a long-term solution, maybe you could take one on flights or when golfing. Just a thought.

    Wishing you well,
    Jessica

  5. Adam
    Adam April 17, 2013 at 9:45 pm #

    Hey Kevin,

    Super sorry to hear what you’re in the middle of at the moment. It won’t go forever like this, that’s for sure, but you need to make sure your head doesn’t get to crazy on you in the meantime.

    You raise a bunch of points (all great)in your posting, but I wanted to try and address this section where you mentioned:

    “Everywhere I go the first thing I do is locate the bathroom and actually go in to check it out to make sure it is suitable (# of stalls, doors on stalls, etc.).”

    Here’s one thing that has helped me, (especially since I’m using a new bathroom everyday now, and most of them are at campgrounds and gas stations on this cross country journey):

    When I’m somewhere new, and need to use the bathroom, I expect the worse. (I also bring my own toilet paper in a backpack, the nice soft kind, not the National Park sandpaper Joshua trees kind…)

    I’m expecting this:

    – one stall only
    – dirty seat
    – minimal privacy
    – this walls to the women’s bathroom
    – no door to the outside
    – autolights that go out after a super short time (like most of the “federal” campgrounds lately…
    – someone else’s stinky load left in there
    – and no hot water to wash hands afterwards

    OK, i’m sure I’ve missed a few “worst case scenario’s, but almost all the time, what i’ve listed above doesn’t actually end up being the reality. AND, to me, those little things that go my way make it doable. AND…when I hit a bathroom that doesn’t have a single thing wrong with it…rare but it DOES HAPPEN (Kodachrome Basin State Park, Utah for example a few days ago) then I’m happy as hell.

    You sound like you have a pretty darn cool life…golfing, fishing with your buds and super active life right(I think by most people’s standards, that goes in the FRIGGIN AWESOME category senor)…And, unless you’re way different than most UC’ers (which is possible, don’t lose faith there) You are probably going to be using public/new crappers more than the average Joe. So, take it like a man/woman, and don’t trip on the small stuff. The luxuries of your home pooper are great and all, but if all the public crappers were better than your home doodie tank, that would kinda suck right?

    I wish you the best, worm is gonna turn for you,

    -Adam

    • Kevin April 18, 2013 at 2:50 am #

      Thanks Adam

      So since I wrote this I have been in the hospital (Day 7 now) for my most severe flare to date. I was having 15-20 BMs/day and couldn’t keep myself hydrated.

      Current attempts to “cure” by the doctors include 60mg IV prednisone, 4800 mg Asacol, 100 mg 6MP among others to address an infection I picked up. Did a flex sig a few days ago, waiting on results. Thought we were doing pretty good yeaterday so I ate a few saltines. Back came the blood. Down about 20lbs in a week.

      Seems like they want to start on Remicade but can’t do that until the flare is more controlled. I’ve done a fair amount of research and , while I would love to take an all natural approach to this issue, it has now started to affect my professional life and I need as quick a response as possible. Hopefully they will have more answers today.

      The GI also mentioned something I hadn’t heard of before which is a 1-stage j-pouch, avoiding the colostomy bag. If that ever becomes a viable option I would be more open to that. 4-6 weeks with a bag under the two stage is still too much for me.

      Thanks all for your insight and support

      -Kevin

      • Adam
        Adam April 18, 2013 at 6:38 am #

        Kevin,

        I’m very very sorry to hear your 7 days in a hospital stay. I hope things can get under control for you quickly. One thing I’d mention to your doctor, is a request for a simple C-diff stool sample test. You can read up on C-diff on this site, or other spots online, but it has a tendency to hit people with nasty UC symptoms, and often the symptoms are very similar to UC. Anyways, your doctor will know about it for sure, but while you’re in there, might be a good thing to have, so you can at least rule out c-diff as an additional problem. ( I came down with C-diff in November 2008, right after my diagnosis, and it took two rounds of strong antibiotics to wipe it out…but once that was complete, my symptoms & bleeding and overall discomfort improved a decent amount.) take care,

        -Adam

  6. Tom
    Tom April 18, 2013 at 1:53 am #

    Kevin

    I also experienced a flare caused by Asacol when i was on 4800mg. At the time I was also on 40mg Prednisone, 100mg 6MP and 375MG of a drug called Ciclosporine (Sandimmune).

    Once I stopped the Asacol I went back into remission. Might be worth looking into removing that from your treatment (obviously with your Dr’s agreement only)

    Best of Luck

    Tom

  7. K April 18, 2013 at 9:19 am #

    My heart goes out to you Kevin, trying to balance family, work/career, and social life with this terrible disease is such a challenge. One always hopes for remission or a cure, but it may not come.

    I became an ileostomate with emergency surgery in the 1970s. Although my life was not as busy as yours, the surgery was wonderful. No more meds, no more pain, no more urgency, and able to eat almost anything.

    If it has to come to this, I know you will accept it and move on. Meanwhile, all the best.

  8. Barb April 18, 2013 at 11:11 am #

    Kevin,

    I just got out of the hospital myself…..tested positive for c-diff so please have them take a stool sample and have them check. My doctor had said that this c-diff is going around…..I was the 5th patient that he had seen with 5 months of getting this. Needless to say I was in and out of the hospital 3x within 2 months. I am finally out of the hospital and currently on 40mg of steroids and 12 pills of ascal a day and finally seeing some improvement. I lost 30 pounds and a lot of muscle tone but drinking the ensure milkshakes and they are helping to put some weight back on. I just went back to the Drs today the plan is to ween off the steroid withing 6 weeks and they are talking about doing the remicade. Sounds like that is what they are planning for you. Looks like we will be in the same boat. Hoping your are feeling better and keep us updated on your recovery.

    Barb

  9. Joan April 18, 2013 at 5:20 pm #

    Prayers sent your way! Our 15 yr old daughter went through the same thing! Once we respectively told her Dr that the asacol made her diarrhea worse, we got her off it. She slowly got better with 6mp, pred, probiotics, iron, vit and vit d3. However now, she has the tightness in her chest, sore throat, diarrhea, and cramps.
    GEESH!
    Good luck and prayers to you both!

  10. Kevin April 18, 2013 at 10:23 pm #

    Just finished first infusion of Remicade with no noticeable side effects. Hopefully I can go home tomorrow and try to resume a normal life. To all those who suggested, we did a C Diff test when I was admitted last week and it came back negative which was good. We had also done one about 3 months ago with similar issues and that was negative as well.

    I did ask about potential allergies to the Asacol and the GI said that while she was not saying it couldn’t happen, she wanted to attack it one thing at a time so that we could better track where there may be triggers. I am OK with that and it didn’t seem like a cop-out.

    So as I sit here today, I still have frequent BMs, some bloody (I laid off the L-glutamine while in the hospital) but mentally I feel positive since we have done something to try and take a step forward, whether it is ultimately successful or not. And for me, I always need to be moving forward.

    Thanks for your support

    Kevin

  11. Kevin April 26, 2013 at 5:20 pm #

    So I have spent the last 2 weeks in the hospital, just came home today with a PICC line for my TPN. They tried the Remicade but in the end it was my decision that I couldn’t wait around for the weeks if would take to possibly work and then have to do it all over again just to try an stay in remission. There for I have opted for the surgical route. It may seem fast to some people given that I was only disgnosed a year ago but I have too much living to do and I think this is my best route given where I have been the last few weeks.

    Surgery is going to be next Friday (May 3rd) and we are going with a 2 stage laproscopic approach. Expect to be in the hospital for a few days following the first surgery and then takedown somewhere 8-10 weeks after. The surgeon has been a wealth of knowledge and really helped relieve some of my fears, many of which were do to the stories of people who had adverse reactions. Turns out, upon investigation, many of these were “open surgeries” with much larger incisions that the laproscopic approach. There is always the risk of complications but I feel very comfortable going into this.

    I will keep you posted on my progress and we seek to excise this demon once and for all.

    Thanks again for all your support.

    Kevin

  12. Milka April 26, 2013 at 6:52 pm #

    Hi Kevin!
    So sorry you are feeling bad. We all know how hard it is to try to be positive and stop stressing, next to impossible in the middle of a bad flare.
    My first flare kept me in the hospital for 2 weeks then off work for 3 months… I thought I was going to have to discontinue my new career which I was only 1 1/2 yrs into. I had to begin Remicade, which took a while to kick in but once it did I have not looked back! I do listen to my body… If I am tired I nap when I can. I just try to eat healthy and omit inflammatory promoting foods such as peppers, tomatoes, potatoes and eggplant. When I was in the flare I just are lots of soups with crackers or rice and all the bland easily digestible foods jello apple sauce etc…
    Hang in there… This will pass! We are all here when you need us!

  13. K April 29, 2013 at 4:27 pm #

    Kevin, Sending all good wishes for your surgery on Friday. My surgery was the solution to this horrible disease, hope yours is too.

  14. Kevin May 5, 2013 at 10:33 am #

    So I am 2 days post first surgery. Docotr said he was surprised my symptoms weren’t worse given the condition of my colon once they removed it. I don’t know if that means I am good with pain or what, but it did help reassure my decision to go this route.

    Not many, if any complications. Pain is as ecpected. They gave me a PCA to control the pain meds and that seems to be sufficient. I have been up and walking a few times a day. Looks like I should be out of here by Tuesday night (4 full days post surgery). The only complication I have to deal with before leaving is that my house is a tri-level so there are lots of stairs to navigate to get from bed to food to bathroom, etc. so we will do some physical thereapy for a few days to get ready.

    Not sure how long until the takedown surgery but my work had been very accomodating and will give me as much time as I need. So far so good. If this fixes everything it will have been well worth it.

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