I WANT Your Ulcerative Colitis Comments and Feedback

Hello I’m Rick 41 from Wisconsin. Just diagnosed with UC Dec. 29th 2011. I have been through a lot with the death of my wife and raising my kids, but now it time for me to ask why??

Help Me Out with this Ulcerative Colitis:

As you read I was recently diagnosed, I have 2 words for this…why me?  Everyone has stories, well here is mine.

I’m a single dad raising 2 kids, my wife died of cancer 9 years ago. I’m never been a selfish person, I asked why when she had cancer and we were constantly traveling between Dr. appointments. But I did what I could do to keep it all together. Fast forward 7 yrs, son graduated from HS and off to college, my daughter is a star soccer player. This is about the time I noticed something was wrong with me. My regular Dr. just blew it off as IBS(inflammatory bowel syndrome), maybe it was at that time but I insisteaded I would have a colonospicy done. Clean bill of health, but still the stomach cramps, constant diarrhea, blood in my stool and getting sick.  So I dealt with it for 2 more years until within the last 6-7 months I just couldn’t take it anymore, going to the bathroom 15-25 times a day was really cutting into my time, I’m a soccer coach for a traveling team and boys and girls high school teams. So I don’t need to tell anyone that there wasn’t always bathrooms were you play and practice. So I used a lot of Amodium AD, like way to much. Well 4-6 pills couldn’t even slow it down anymore. Went back to the Dr. had another colonoscopy and my colon was so inflamed the had a hard time moving the scope through my colon. Actually woke my sleepy butt up from dream land…not cool.

Well here I am, diagnosed with UC, taking 16 pills a day. Just started looking at the SCD diet, right now.  I’ve been on medications for almost 7 weeks and getting a bit better but the constant pressure, pain and pure embarrassment is to much sometimes. People just don’t understand it at all. HELP!!!!

Colitis Medications:

Prednisone 40mg/day and basalazide 6750mg/day. Nothing is working.
written by Rick
submitted in the Colitis Venting Area



dad

24 Responses to I WANT Your Ulcerative Colitis Comments and Feedback

  1. Jennifer B. February 7, 2012 at 5:34 pm #

    Rick-Bless you! It is a horrid awful disease. But know this, you are not alone. I have been there and done that with two small children. I am one week shy of my one year annivesary of a total colectomy and have every complication known to man. So please e-mail me if you have any questions or need support. it is a horrible tough disease, but you are tougher.

    I just have to tell you that one thing that helped me is trying, TRYING, to find humor in the disease. It is hard. But I have to share this one story. Right before my surgery I decided to chance it and go to our local grocery store that was very small, KNEW EXACTLY where the bathroom was. I got not further than the first aisle and it hit. I told my kids, who already knew the drill, “mama has to go potty.” Granted, there were not a lot of people in the store, but my dear sweetheart of a daughter decided that she would run in front of me and spread her arms wide open in front of everyone she saw and say, “please move, my mama has to poop.” I still smile and well up thinking about that memory, as “crappy” as it was.

    Bless you and your children-Jennifer diagnosed in 2008, symptomatic from 2002. On meds from Asacol to Remicade, with NO success from any meds. Hospitalized 12 times during three months of last pregnancy. Constant c-diff infections. (Did I say I had been there? LOL….)

    • Rick February 9, 2012 at 3:36 pm #

      OMG Jennifer I just about piss my pants when I read that story about your daughter. That is way to funny. Sorry…But I know what you mean about knowing exactly where each bathroom is in each place I go. And believe me I think the people at Wal Mart know me by name now.
      I know life will eventually get back to normal. It will, I have been through so much that this is just a bump in my life. My kids are everything to me. I have started the SNC diet, it seems to be going better, not quite a few bowel moments.
      Thanks so much for the kind words. I would like to start a support group for us UC’ers here in Wisconsin, but I don’t know how that would go. Hi my name is Rick and everyday I fear that I will shit my pants…..
      Again I will be back and forth hopefully connecting with each of you out here. I’m very glad that I found this site and look forward to the communications that we will have.

      Thanks again.

      • Kelly March 24, 2012 at 11:24 am #

        Dear Rick,
        I am so sorry for your trials and I feel for you deeply. I do however like your UC support group intro…very funny. We do have to try and keep our sense of humor, even though it is very difficult at times. If we can’t laugh at ourselves, we’ll go crazy! I know I would. Hang in there and you are right, you will get through this. You have your wonderful kids, that is important to make sure you take care of yourself so you can be with them.
        Did you say you tried the SCD? I know some folks try it and don’t get the total results that they hope for, but if you stick with it, as hard as it is, I think you will see relief from at least some of the symptoms and that may mean a whole lot to you. Like reduction in bathroom visits, urgency, bloating and cramping – all those have been greatly reduced for me. And yes it sucks that we know where every damn bathroom is in every place we go….it’s humiliating sometimes and such an interruption to your life.
        Something that might help too, I read the “SCD lifestyle surviving to thriving” by Jordan Reasoner and Steven Wright. They help bridge the gap between, “Breaking the Vicious cycle- Elaine Gottschall” which gives you the foundation of the diet, and transitioning into the introduction of more veggies and fruits in a systematic way. It has been invaluable. I believe I found it off of this site, although I haven’t navigated this site extensively – just got on about 2 weeks ago. If not the site is SCDLifestylebook.com Comes with the main book, FAQ book and a book called 25 ways to hack the SCD. Best of luck to you in your search for help. We are all there with you and know the pain of it (literally and figuratively). This forum that Adam has provided is also been a great source of comfort as well. I hope you have felt supported here as well.
        Also I am about to try probiotics and a multi vitamin, from GI Pro health that make SCD safe stuff. Just ordered them so I’ll try to report on my results. I am feeling a lot better on the diet and I think that the probiotics and vitamins can only help.
        Take care,
        Kelly

  2. Allyson February 7, 2012 at 5:57 pm #

    Rick, I am really sorry to hear about everything. I remember when I was first diagnosed with UC. I felt so lonely, scared, and hopeless. Even though I had a great support system, I felt alone because none of them really knew what it felt like. I felt scared because I didn’t know what my future held. And I felt hopeless because nothing seemed to be getting better. But if I could tell anyone who is newly diagnosed, it is this: Don’t give up hope. You are not alone. I know things seem tough now, but you will eventually find relief and what helps to put you in remission. It may take a while, but remember this….

    “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.” James 1:2-4

    You are going to be a much stronger person because of this. If you ever need to vent or ask questions, we are all here to help each other on this website! You’ve come to the right place. As for your question of, “Why me?”… Well, I have to admit this question ran through my head all the time and it still does from time to time. It made me so confused how I got it because I took pretty good care of myself. I ate a healthy diet and exercised 4 times a week. I didn’t smoke, I occasionally drank. But for the most part, I took good care of myself. Sometimes I feel sad because I miss the life I used to have before UC. Sad because it took a big chunk -a year- out of my life where I had to take off time from work and school and move in with my parents/live at the hospital. Sometimes I feel so angry I could just scream. Angry because I get so upset at people who take their health for granted and simply because no one I’m close with can TRULY relate to my pain and experience with UC. But, on most days, I try to remember that everything happens for a reason – the good and the bad. I have learned so much about life from UC – things that I don’t think half the people my age understand. I have learned to appreciate the good days and the simple things in life. I have more empathy and compassion for people. I know what it feels like to be at the very bottom – and how hard it was for me to bring myself back up again. And I also know the feeling of victory when I have overcome the pain and hurt that UC brought to my life. In retrospect, I don’t regret UC at all. It has been a blessing in disguise to me in more ways than you probably care to know.

    Just hang in there and be strong. I promise your life will get better. I like to think that God picked us out because he knows we are warriors and can handle it – not everyone could survive in our shoes so we must be pretty darn special :)

    • Rick February 9, 2012 at 3:38 pm #

      Allyson, Thanks for the kind words. I look forward to each day. I thank God that I have not be in the hospital. I have been very fortunate that way. Again lets keep in touch and we will help each other.

      Thanks

      Rick

  3. JamieIsLame
    JamieIsLame February 7, 2012 at 6:04 pm #

    seems like you haven’t had it easy!! :/

    as for the meds where you said nothing was working, don’t worry about it too much yet, 7 weeks isn’t very long in meds terms, it took me 2 months before my meds started to work!

    also, you’re on the basic meds, so there’s so many options for you now if they dont work! Imuran, 6-mp, infliximab (remicade) and adalimumab (humira) just to name a few!

    I know it doesn’t seem like it right now, but it’s gonna be the last thing on your mind pretty soon!
    just hold your head up!

    • Rick February 9, 2012 at 3:42 pm #

      Thanks for the kind words, I have been holding my head up high. I was very terrible the last 2 days, but today is like a new day. I know that I have just started this journey and it will be a long road. The meds are just starters, but actually my Dr. sees improvement already. Hopefully i can get rid of the predizone very soon. I started the SNC diet and actually like it. I’m introducing new foods everyday. Gotto love the honey

      Take care and Thanks for the kind words.

  4. Desperate Husband February 7, 2012 at 10:54 pm #

    Rick,

    We here all share your problems and empathize with your plight. Your UC will be a significant mental and physical challenge to overcome. For me, I need to keep my mind occupied with other tasks or the disease gets to me and brings me down. The more I dwell, the worse it seems. Don’t do that. Find what you like doing and use it as therapy. Look heavily into alternative medicine to supplement your meds. You’ll be in remission in no time. Come to this site to talk. We’ll listen.

    -DH

    • Rick February 9, 2012 at 3:44 pm #

      Where can i find more info on the alternative meds?

      • Kara D
        kara February 21, 2012 at 9:23 pm #

        hi rik look up cayenne pepper its amazing to stop bleeding and heal ulcers when in a flare, also cabbage juice is good you can mix with apple juice so taste better [ check the net for dosages] it takes a while to work out what irritates you and illiminate it . for me its meat sugar and alchohol and corn un cooked veggies and un peeled veggies or fruit but i can tolerate rice only if its white. you will be different but diet is huge in controlling your symptoms. and do look up cayenne pepper its amazing healing stuff!

  5. OrdinaryWorldWhereRU February 8, 2012 at 5:13 pm #

    I am sorry to hear of your wife’s passing and now you are saddled with this. I have read so many people’s stories from people who never had antibiotics and only ate organic vegan to people who completely lived it up and everything in between and yet all have this same disease. I guess the thing to try to take away is that no one did anything wrong to get this disease. No one could have done anything differently to not get the disease. I have also read so many different stories about what works for people and that runs the gambit also. My doctor was right in that it is unique to each person so it puts one on a trial and error footpath. For example, my attempt at SCD were never successful. As soon as I put plain starches back into my diet, I actually saw some improvement. I am on medications that are helping me and I am seeing continual improvement. So that again points to the fact that we are individuals in how our bodies respond to this disease. I have read of some amazing researchers and talented doctors continually researching this disease in hopes of finding the cause and a cure. I just wish there were more resources for funding it.

  6. Stephen February 8, 2012 at 7:33 pm #

    Hey Rick. We’re basically neighbors! I’m a 40 year old Dad of two in Wisconsin! I was riddled with shame and embarrassment when I was first sick, and it’s a hard thing to overcome. If I had it to do over again, I would make therapy a top priority, and have promised myself that if I get very sick again that I’m going to see a counselor. I followed the SCD strictly with limited results. I did find out that I”m completely gluten intolerant and once I got off and stayed off the gluten, my gas and number of trips to the shitter dropped significantly! I’m currently in remission of symptoms with only a mini flare here and there to scare the hell out of me and joint pain issues that come and go. I told Adam to feel free to share my email with you – holler at me anytime!

    • Rick February 9, 2012 at 3:47 pm #

      Stephen, I will send you an email and we can talk. I’m not the fastest in responding, I entering my busy and stressed time of the year. Soccer starts for my High School teams and I also run a Speed and Agility training.

      Talk soon

      I’m on the East side of Wisconsin.

  7. Tiernee
    Tiernee February 8, 2012 at 10:06 pm #

    Hey guys! I’m here in Wisconsin too. But I’m a mom. Rick, I ask “why me” all the time. It feels good for a moment to kick and scream but then once I’m done, I realize I’ve accomplished nothing. It’s not wrong to wonder what the hell one had done to deserve this misery and be angry about it and sometimes I need to feel those things just to get on with it. A close friend told me one of the last things a person in misery wants to hear, “Maybe Tiernee, you are going through this so you can help someone else someday”. Oh, haha, thanks. However, her words have stuck with me. It’s a lot to deal with, a lot. But know that your doctors want to help you and that your friends and family want you to get better. And you will. Someway, somehow. Stephen might be on to something in seeking therapy. I’m looking into with WI chapter of CCFA to see what kind of support groups they have and might participate in and volunteer. Get involved, get behind the drive for more research and better treatments. I’ve been trying to find a good demographics study because I have a sneaking suspicion there are quite a few of us in Wisconsin. I’ll let you know what I find…in the meantime, don’t get too down on yourself. You didn’t do anything wrong. Shit happens.

    • Rick February 9, 2012 at 3:50 pm #

      Tiernee, I would love to start a support group for us UC’ers. Where would I start? Could put something on Craig’s list, but most likely get the crazies asking about it. If you have any ideas shoot them at me.

      Thanks for the kind words, talk soon

      Rick

  8. Trish February 9, 2012 at 1:45 am #

    Oh Rick, this disease is so rubbish and I’m so sorry to hear you’ve got it after all you’ve been through, but why NOT you? Why not any of us? Life doesn’t dole out bad things to bad people and good things to good people or Pol Pot would never have died in his bed… But I digress. Please get on the SCD straight away – it will help back up your meds, and as others have said, it is only a few weeks since your diagnosis – remember it took years to get this ill, it takes time to get better (and it comes in steps, sometimes you take a backward step too). The Imodium could well have made your symptoms much worse over time, and it will take time to get that out of your system. Personally, I’ve found the SCD intro chicken soup knocks the D on the head very quickly, which eases your mind wonderfully. Feel free to vent on here – only people who have had this urgency can possibly understand the embarrassment (my low point, crapping behind a lorry on a London ring-road in broad daylight in morning rush hour – made me depressed for ages). And many of us, too, have been misdiagnosed for many years before finding the true cause of our symptoms – kudos to you for on insisting on that colonoscopy. Pecker up, as we say in Blighty. :) Trish

  9. Stephen February 9, 2012 at 8:31 am #

    Hey Tiernee. Wisconsin represent! :)

    I think CCFA meetings are a great idea. I wish I was closer to one, but just had the idea to look at surrounding states too (I live on the far West side) and found that there is one in Rochester which is only an hour away. Once a month… I might give it a try!

    It would be interesting to map out IBD folks to see where the concentrations are in relation to the general pop. I’ve only been here for a year and a half, so can’t blame the mitten-shaped state though. :)

    Stephen

  10. dave evans February 9, 2012 at 9:38 am #

    Rick–didnt mention if you ever smoked or not ( my UC appeared after I quit smoking, just one of the maybe WHY’s). Anyhow, the docs will walk you up thru the various treatments over the next several months to try to get some control over the flares–as you go thru this it is important that you pay close attention to the effectiveness of the drug ie write down how often and any differences in the stools you experience–that way you wont end up with something that is really not making any difference or (which can happen) actually makes it worse. Documentation will greatly aid your doc in making changes to your treatment. In the meantime, start paying attention to yourself– what’s in and what’s out! First water is necssary so you dont dehydrate–not juices and energy drinks etc just water–then I would radically alter my diet assuming what I am eating now isnt helping so change it–in my case, and this is just me, no flour or sugar (basically gluten free) no dairy, no carbonation and very little fresh fruit and vegetables–what do i eat? coffee but green tea is way better–one egg and a little ham or bacon and there is a gluten free pancake mix that with soy milk is very good–plain baked potatoes and meat, not processed, but steak twice a week, chicken, pork, fish etc and brown rice is ok as well–so for me, high dietary fats and potatoes (nicotine) keep my guts in check! And absolutely no cayenne pepper in any form! however, have found that Guinness draught is ok (and soothing)((bubbles are nitrogen not carbon dioxide)) You will learn to manage it and life will get back to normal–best of luck!!

    • Rick February 9, 2012 at 3:57 pm #

      I quit smoking in the spring of 99. Don’t actually remember if any kind of symptoms started or not. I was reading about the smoking and UC, seriously has anyone really thought that there symptoms went away or ?

      I’m trying to research alternative meds right now, have crappy insurance so need to see what else I can do, Ideas???

      Thanks

      Rick

    • Jill (Canada) February 27, 2012 at 4:37 pm #

      Hi Dave,

      I quite smoking November 11 of 2011 and am in the worst flare ever. Wow. Imagine – I quit smoking to get healthier and now I can’t leave the house WTH!!!!

  11. Blake February 9, 2012 at 10:01 pm #

    Hey Rick,
    I felt like I had to respond to your story. Sorry for everything you’ve been through. I’m 30, a father of a 2 and a half year old, I couldn’t imagine what life would be like if I lost my wife. You deserve a lot of credit for being not only a single father, but a single father with Ulcerative Colitis having to poop 15-25 times a day… Yikes! I was in the same situation (with UC) as you are last year. I tried the drugs, diets and all that fun stuff but nothing would make my flare go away. After breaking out in a drug rash from Remicade I really only had one option left, the dreaded colon removal. My doctor was strongly urging me to do this and as I was reluctant to do it, I knew it was going to have to happen under my consent, or in an emergency type situation so I got shitty colon removed. I’m a little over 2 months from colon removal, wearing an ostomy bag and I gotta say I feal great! I’m not trying to tell you to join the club by any means, but just know if nothing else works for you… and I hope it does, don’t let fear rule out that option cause it’s really far better than life with UC from my experience so far. Anyway, best of luck buddy!

    Blake

  12. PeterNZ February 11, 2012 at 5:24 pm #

    Hi Rick,

    You could consider upping the pred dose in the short term. This is the ONLY thing that works for me to calm a flare. I hate it but it works so I love it too. I start on 60mgs now. Also could consider “Colifoam” which is steroid foam you squirt directly up your arse. Worked well for me as it targeted the site of the localised inflammation at the terminus of my bowel. You should discuss this with your doctor though.
    Looking at natural alternatives I have cut out all gluten in my diet. This seems to work well and if I eat some by accident I can tell straight away.
    Good luck,
    Peter

  13. Tiernee
    Tiernee February 17, 2012 at 12:02 am #

    Hi Rick,

    As far as support groups go the CCFA.org website–Wisconsin Chapter has info. This is actually a pretty good one here on this website too! But meeting people in person is always really good. I’m lucky because I actually work with someone that has UC as well so we can chat about it a bit. I had to drop out of classes this semester to try and get better so I should have some time to try and get to a meeting and see what it’s like….I’ll let you know.

    Smoking? Did you see the giant post on here about smoking? I remember a time about two years ago that I was down to 200mg of Asacol a day, eating and drinking whatever I wanted, had the most satisfying #2’s as ever, working, going to school, raising my son, traveling to Chicago every other weekend, and smoking maybe twice a week…I don’t know. I asked my doctor about it and he said that the consequences out way the positives at this point and he sees too many flares when people quit smoking. He asked me to please not. I’m guessing they may end up deriving a drug someday from this information.

    Natural remedies…exercise!!! I don’t know what it is but it helps! I was off meds last Spring getting diagnosed and was pissed off and angry that my body was not cooperating and I ran as hard and fast and as long as I could…the next day…solid shit. For real. Is it the increased blood flow? Oxygen? Endorphins? I actually wonder if your body doesn’t maybe send out it’s own anti inflammatories in response to the bodies increased movements and actions?? I’ll have to look into that theory. Either way it decreases stress, makes one stronger and settles the mind.

    It sounds like you are very busy. Be sure to make time for yourself so you can focus on healing. There is a story of the mother raccoon that spent all her energy caring for the other animals of the forest fire that she herself fell ill and was of no help to anyone.

    My best wishes!!

    oh hey, and the SCD thing…i finally got started on it this week after reading about the correlation to starches. I was stuck on thinking it was “the gluten” but it connected when it talked about rice…my gut HATES rice. And recently potatoes :( …let me know how it goes for you! I’ll keep you posted too :)

  14. Jill (Canada) February 27, 2012 at 2:07 pm #

    Hi Rick

    I’m new to this site – but your story and mine are very similar. I am a single Mom of 3 kids – one who plays on a travelling team where I am coaching as well. Soccer fields have become my biggest nightmare! I’m just getting ready today to be admitted to hospital tomorrow and am feeling very anxious. I’ve never had to be admitted before. My father has had his colon removed due to this fine disease, so I guess I knew this was coming. I truly hope I won’t lose mine – and that the additional meds in hospital can help.

    Good luck with yours – I’ve got three weeks before our next showcase tournament to get better!!!

    Jill

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