Ulcerative Colitis Tips


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Newly Diagnosed with Colitis – Ben’s Journey Back to Good Health

Ben the air force guy catching a fish

Big Ben getting his fish on! (wooo hooo, nice catch Ben…what bait you using??)

Meet Ben:

Hello, my name is Ben, and I’m a 30 yr old male, and veteran of U.S. Air Force. I started having g.i. problems while deployed 2008-2009, and was diagnosed proctitis in January 2010 by pathology report after my first scope. However, my civilian gastroenterologist failed to follow up/treat me for this and instead carried a diagnosis of irritable bowel and celiac disease (which I do seem to have). I actually just found this error this summer when I finally obtained my medical records from Oklahoma. I lost 45 lbs over the next few years despite following his regimen and then started getting treated through the VA system in 2013. For the last year and a half my flares have increased to about every 3-4 weeks. I was scoped twice this year, and the 2nd scope in September finally revealed proctosigmoiditis and I was able to begin treatment.

Some more Ben details:

I’m a born and raised Oklahoman, but my wife and I moved to the Orlando, FL area last year so I could pursue seminary out here (Masters in Biblical Studies to be specific, I may one day be a pastor). I like to fish and do anything I can outdoors when I’m feeling up for it.

Currently His Colitis Is…

I just finished 5 weeks of prednisone, so I guess I might be in what you would call “remission.” However, my gut has been feeling a little shaky the last few days since I’ve been off and started Imuran. BM’s are down to under 5/day, but I am still having some severe pain before my first movement of the day.

Ben’s Colitis Story:

UC has definitely altered my life, and is continuing to. I was medically discharged from the service due to my health conditions in 2011. I have developed several other “auto-immune” issues, I’m guessing because of the unraveling of health in my gut. I have neurological problems, chronic fatigue, joint and muscle pain, among others. I have come to understand one of the biggest things with regard to managing UC is managing stress, and I am learning but have a long way to go. I had to withdraw from half of my classes and take a leave of absence from the work I was doing. Going forward, at least for now, I’ll make sure I have a much smaller plate than before. This has been a humbling disease, and not all of that is bad I would say. I am definitely more compassionate toward other folks who are suffering and dealing with tough things. It’s hard to say if this whole ordeal has been more difficult on me or my wife… She is a n amazing woman and cares for me at a level that is truly amazing and can only be summed up in one word: grace. I want to get well for her. All she’s ever known is the sick me. She dated, got engaged to, and married the sick me.

My biggest questions revolve around medication and expectations. I know everyone is different and no two UC’ers will likely respond in the same fashion, but I haven’t connected to a support group yet. After starting prednisone, which I seemed to respond very well too (except for the insomnia), we tried balsalazide (Colazal), however I was immediately plagued with horrible stomach pain (upper, not my lower gut UC pain) and almost passed out, so we had to discontinue. I know the CCFA (and docs) say that if you react negatively to one drug in the class of “aminosalicylates” that it means you cannot tolerate any of them or have an allergy. However, they specifically say that bleeding and diarrhea (or a worsening of UC symptoms) would be suggestive of this, which I was not having. Were any of you able to tolerate and of the 5-ASA drugs after responding negatively to another? I feel like we gave up too quickly on that class of drugs.

I just started Imuran last week after finishing my prednisone taper. I’m wondering about people’s experience with this drug. I’ve read it can take months to kick in, and my gut is already started to feel a little shaky and I’m having some horrible “flare-type” pains in the morning before my first movement. However, my movements are still 3-4 per day (so far) which is incredible coming from my usual 15-25 per day the last 6-8 months. Also, since starting the Imuran, I’ve gotten pretty sick. We thought it was strep at first, but now it feels like a nasty head cold or possibly a sinus infection… coincidence? I’m headed in to the clinic tomorrow to get a CBC drawn to see where my white cell levels are, so I guess we’ll find out soon enough. Did anyone else get sick like that with only being on Imuran for less than a week? I only ask because I do not get sick often, and haven’t had a cold in years.

I currently receive all of my healthcare through the VA health system, which can be a challenge to say the least… however I feel I do have a great g.i. doc, at the very least one who truly cares about me and is eager to help. While that is a huge comfort, I do believe the VA is largely unequipped to truly care for me and I hope I can get well enough to secure some better healthcare options in the future. My wife and I employ all other means we can to hopefully assist in the healing process. Because of my Celiac disease (diagnosed 5 yrs ago), diet and nutrition has been a huge part of our lives for several years, and we now follow our own version of the SCD diet which seems to be helpful.

Thank you for letting me share a little piece of my life, and for sharing your own. I’ve learned so much and been helped in so many ways by reading your stories. Keep fighting.

In the trenches with you,
Ben

Medications / Dieting / Supplements:

Prednisone for 5 weeks upon initial diagnosis. Currently taking Imuran 100mg per day.

Also utilizing SCD diet, Vitamin D, Magnesium, Floravital Iron w/ Herbs (for anemia and B vitamins)

Tried Balsalazide (Colazal) 750mg 3x/day, but reacted and stopped the first day.

written by Ben H

submitted in the colitis venting area (to add your story… click here )




air force, prednisone, proctosigmoiditis

17 Responses to Newly Diagnosed with Colitis – Ben’s Journey Back to Good Health

  1. Shelley November 3, 2014 at 1:09 pm #

    I’m curious if you’ve correlated your symptoms/diagnosis with the vaccinations that you likely received prior to deployment. Gastrointestinal disorders seem to be more and more common among our service men and women, and it seems to happen after vaccinations. Gastrointestinal disorders are also the most common co-morbid disorder in children with autism.

    • Tom
      Tom November 3, 2014 at 3:04 pm #

      Shelley, you do know the old vaccination causes autism thing is a load of old rubbish right?

      Ben, any chance of you trying some “local” meds? i.e 5ASA suppositories/enemas? As it’s proctosigmoiditis you have the foam type stuff would be worth a shot as it doesn’t have to travel too far up and there’s literally no systemic side effects from it.

      I’ve taken 6MP which is the brother drug of Imuran. It kind of worked for me but made me feel sick and made my hair start to fall out

      • Ben H
        Ben November 3, 2014 at 3:25 pm #

        Because of the severity and number of flares I was experiencing, I think my doc just wanted to hit it hard to begin with. We actually just talked about those options today when I was at the clinic. I think we will try those soon, especially if/when I have another flare. I definitely think it’s worth a shot too while my colitis is limited to those two lower regions.

        I don’t think I’ve been on Imuran long enough to judge it for me, I should get my blood work back tomorrow and we’ll see where my white count is. Other than this nasty cold I’m currently fighting, I don’t think I’ve had any side effects. Again, I’m sure time will tell. Sorry to hear it wasn’t so nice to you!

    • Ben H
      Ben November 3, 2014 at 3:19 pm #

      Hey Shelley, it’s definitely crossed my mind more than once. I’m one of well over 100,000 vets that came back from the Middle East since the 90’s and had a sudden collapse of health (usually g.i. and neurological problems). They were still giving the anthrax rounds when I was in also, so who knows. What’s done is done. The VA is tracking my health due to some of the things I was possibly exposed to, but it’s hard to say if we will ever know why this is happening to so many vets!

  2. Adam
    Adam November 3, 2014 at 2:19 pm #

    Hi Ben,

    Nice fish you caught there! I hope you get some nice ones the rest of this year and on into 2015 too! Send some pics over if you can!(Site always can use some nice fish pics:))

    But hey, as for your question about not being able to tolerate certain 5-ASA meds but responding better to others…that’s a great question and for sure one that many a UC’er has dealt with especially after the initial diagnosis and being bounced around on different ones at that level. I myself tried a few. Asacol and then Colazol, both of which didn’t work for me, however I distinctly remember my GI telling me that some folks do well with one but not the another. And of course as you know we all are different, and as the disease changes from time period to time period regarding severity, its always going to be hard to pinpoint the reason for healing especially in the short term. So without any positive firsthand experience with those meds, I myself can’t give you a time tested answer, but I’m hoping some of the other readers here will be able to shed some more light on your question. For now though, it sounds like you’re dealing with some difficulties of coming off prednisone(and that’s also SUPER common for people with UC) since its such a powerful med that works wonders for many but of course pred is only a temporary band aid. Keep your spirits up, and big props to your wife for being there so much for you. Diet has been huge for me, I’ve written quite a bit about my experiences with it here on the site and I hope it will continue to treat you well too. Keep us posted as things progress, and thanks again for sharing Ben!
    -Adam

    • Ben H
      Ben November 3, 2014 at 3:34 pm #

      Thanks Adam! I’m brand new to saltwater fishing (it’s all bass and catfish where I’m from), but it’s been a lot of fun! I hear the whiting and pompano are about to start running close to the shore like crazy so I’m hoping to catch us a dinner or two soon…

      Thanks for the info, I actually reached out to the CCFA and they were incredible with all the resources they sent me to read up about the issue. It was very helpful. I’ll stay the course for now with Imuran and try to be patient as we figure this monster out the best we can. Your resources have helped us out a ton as well, thanks for making all this available! Blessings bro!

      • Adam
        Adam November 4, 2014 at 10:39 am #

        I’ve never caught a pompano…but i’m thinking your story could use a picture of a nice one;))

  3. Melissa S. November 4, 2014 at 7:53 am #

    Regarding the balsalazide…if it had a coating, you could have been reacting to the coating on the pill, not the medicine itself. That happened to me with a different medication. Might be worth checking out.

    • Ben H
      Ben November 4, 2014 at 2:35 pm #

      Interesting, I hadn’t heard of that… Mine were in capsules so I’m not sure if there was a connection there. I’ll definitely keep an eye on that for future meds though, thanks!

  4. Jennifer Z November 4, 2014 at 8:16 am #

    Where was your deployment? I was in the Air Force and was deployed 2008-2009 and became ill shortly after coming home.

    I was on Imuran for a few years but my GI said I was metabolizing it too fast so now I am on Cimzia and for the first time in years I feel normalish.

    • Ben H
      Ben November 4, 2014 at 2:40 pm #

      Hey Jennifer, thanks for serving! I was a firefighter and worked an airfield in Kuwait, and I was there from 2008-2009 as well. What about you?

      Sorry to hear you got sick as well… that’s crazy. I haven’t felt right since I got home, it’s weird (different weird) now that I’m getting some answers and starting to feel better. I hope you continue to improve!

  5. Sandi November 4, 2014 at 10:48 am #

    Ben
    I take Imuran 125mg daily and Asacol(Mesalazine 800mg x6 daily), never had any side effects with Asacol but when started on Imuran had the worst case of sinusitis which did eventually recede then with each increase in Imuran I have had severe rash on my face which takes about 5 months to fade. Other than that I take a probiotic, aloa vera supplement, L-glutamine, Vitamin B complex and folic acid, am in remission and generally feel good, my advice would be to try some of the supplements recommended by others on the site to see what works for you.

    • Ben H
      Ben November 4, 2014 at 2:46 pm #

      Hi Sandi, thanks for sharing your experience, that’s helpful. I’m not sure if I’d call it a rash, but my face is definitely breaking out with something since I started treatment. I also use several of the supplements you listed, although we haven’t found the right probiotic yet. I’m hoping to try VSL#3 next.

      So glad you are in remission, may that continue for you!

  6. erin November 4, 2014 at 12:45 pm #

    Hi Ben, I am sorry to hear of the long journey you had just getting the right diagnosis but hope that you will soon find the right meds for you! I am currently on Humira and Imuran. I think that taking the Imuran is what helped finally get my symptoms under control, as I’d already been on Humira for 8 months before he added the Imuran to it. It did take a couple of months for me to notice a difference, so that may be the case for you too. I will say also that recently when I was in a mild flare my GI prescribed the mesalamine enema (Rowasa), and it really helped me.

    Good luck to you!

    • Ben H
      Ben November 11, 2014 at 11:05 am #

      Thanks Erin, things are looking up for sure, which is nice to be able to say. I’m still hanging in there… (no flares for 45 days, a record for me). That’s good to hear about the Rowasa. I think that will be something we try if I start to have issues again.

      Blessings to you and your health!

  7. Shane November 8, 2014 at 5:47 am #

    Hi. Sorry to hear about your symptoms. I also live in Orlando and recommend Dr. Shafran if you need another gi opinion. He always has access to trial medications as well and specializes in uc/crohns. I first started remicade at the mayo clinic in Jacksonville and then moved treatment to orlando to be closer to home but it was too late in the game for me. So attacking this thing head on and early is key!

    • Ben H
      Ben November 11, 2014 at 11:09 am #

      Hey Shane, thanks for the recommendation and encouragement. I’ve actually been on his website looking for information and possibilities for the future. Unfortunately at this point I have to get all my care through the VA medical system, we can’t afford health-care to get me to outside docs. Hopefully that will change as I continue to improve and can maybe hold down a job again.

      I hope you are doing better, it sounds like you’ve had a rough journey.

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