Been Way Too Long

Introduction:

My name is Alex, im 32, and currently live on long island ny. I was diagnosed sometime around 2005, but never had any worse symptoms than a bit of blood in the toilet……..that is until april 2011.
As far as hobbies, i have lots depending on what my condition will allow, but surfing is numero uno!

Current Colitis Symptoms:

Mild cramping, urgency, some mucus, a little blood. I’m on the bowl about 4 times a day average right now……….things are constantly changing.

Colitis Story:

Alright, the story box!

So, I’ve posted here before, but its been so long I cant quite remember when. Also I’m not sure if there is a way to look-up my old story for a background, so I will try to give a quick repeat here.(Oh wait a minute, here’s the link to my old stories: https://www.ihaveuc.com/author/alex/)  Before I get into that though, I just want to say thank you to Adam, and also for everyone else who posts on this site. I’m sure I speak for more than myself when I say that I visit regularly, and use this site as an important tool in my coping/recovering from this disease and I hope some part of my story can help someone theirs.

A brief recap goes like this,
2005 I live in San Diego, I work construction, I have regular bm’s (bowel movements), one day i half crap my pants at work, next day same thing, soon i see blood, go to 2 different doctors, have 2 colonoscopys, both same, ulcerative colitis, mild proctitis, mesalamine,5-6years basically symptom free. 2010 I see bit of blood, I don’t care, doesn’t affect me, 2011 I move to NY, April start having urgency after breakfast, then more blood, then mucus, then frequency, pain, nausia,weakness, and then some 2,4,8,10…. .20 , enemas ,pred ,remicade…..nothing, colonoscopy, severe pan colitis, December I am in 24hour severe pain, shit blood 40 times a day (and night) lost 20 pounds that I didn’t have in the first place.Hospitalized,ivpred,they want to take my colon,wont let them, eventually escaped, went home on 40mg oral pred, still 15 times bloody bm a day. I found this site, and posted around this time.  I also started the SCD at this time. I did an extremely slow taper off the prednisone…..maybe 6+ months…. against doctors suggestion (they want to go faster). i dint want to be on it that long either because side effects are not good, but i couldn’t see stopping because i didn’t feel i was ready. i would always wait until i saw a little improvement for a few days, then i would drop 5mg…..when i got down to 10 i would drop by 2.5.

Its hard to explain how long and a difficult process this was…..and continues to be. I was finally able to completely stop the prednisone, and am grateful for that. I believe I am still healing, but a BIG reason why i am writing this post is to explain how long this seems to be taking. I hope it may inspire patience in others in my situation. I got my patience from the Gotchall (kind of a funny last name) story…..apparently 2 years was the magic number there. I watch the video of Adam giving his flare a “beatdown” in like a week, and truthfully its a little disheartening for me sometimes (even though i think its a really positive and hope inspiring thing). I definitely agree with the theory that everyone is different, and will respond differently to different tactics (and maybe some not at all, or not soon enough). Since I have been on the specific carbohydrate diet….I’ve experimented with many things. suppliments(fish oil,probitic,astaxathin,vitd3,vitb,boswelia, digestive enzyme,tumeric,and a bunch more) herbal stuff (comfrey tea, red clover, nettle,oatstraw) also foods within the diet (right now i do not eat the yogurt, also no nuts,honey,coffee,cheese,alcohol, caffeine, fruit,and probably some other stuff) mostly I’m meat and cooked veggies in different shapes. I have recently found that dccc/farmers cheese really stops me up. I don’t know if that’s a good thing, but if i eat it, i don’t need to use toilet all day (which is kinda nice for a change.

So, moral of my story, before I go on way too long, is that I believe I am getting better, but it’s so friggen slow that sometimes its hard to see. And also there are steps back from time to time which are really frustrating.

construction worker with colitis comic

Actually I’m gonna be like Adam and claim that I am giving this disease a BEATDOWN……although i guess you never know when its gonna turn on you for sure.  Just for today i feel good. oh, i forgot to mention, i pray pretty regularly now……I’m not religious, but diseases have a way of making one a searcher.

thanks for listening.

p.s. I’m gonna handle all takers on this pullup challenge once I get my hands on a camera….word up!

Where I’d like to be in 1 year:

rich and symptom free….duh

Colitis Medications:

asacol hd 6 a day

tumeric
digestive enzyme
d3
astaxathin
l-glutamine

written by Alex




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4 Responses to Been Way Too Long

  1. Adam
    Adam October 21, 2012 at 9:27 pm #

    Hey Alex,

    What up man, thanks so much for posting and update, and dude, I totally hear you how its almost painful the long prednisone taper. I was in that same dance several years ago, and it was just about that long for me starting at 60mg/day and finally pulling the plug and stoping the 2.5mg/day, but heck yeah it seemed like forever.

    I’m way glad you’re enjoying the site, and way glad you’re optimistic. Way cool you’re not pooping your pants anymore, and finally, GO GET (or steal if you have to) a friggin camera. I’m sure you’ve got neighbors who’d borrow you theirs right???!!!! (Blake is talking mad you know what) And we need some other’s to give him a run for the money. You heard it right here, if you win the Pullup Challenge which is ending the final day of November, I’ll buy you a new camera. But you’ve got to get a video uploaded before then of you with another one(you can do it)

    Best of luck to you for the rest of 2012 and beyond,

    -Adam

  2. Mylene
    Mylène October 22, 2012 at 5:38 am #

    Hi Alex !!

    I can so relate to your story and thank you for sharing !! I have had my DX of UC since 2007 and never been in remission since that time and it got worse last since the last year going 30 to 40 times a day to the bathroom until I got hospitalized and they got me on intraveinous prednisone at 100mg. They talked about surgery which I refused as well. I than found Adam’s wonderful book and this site I started on the scd diet and have been on it for 1 month and a half and seen great improvements and now going 4 to 6 times a day. I am still on the pred tapering off and am now at 40mg I tried going to 35mg and some symptoms came back so I am afraid to taper off more but I know I need to cross that barrier !! My dr wants me on this new drug calle simponie which is in the same family as remicade and Humira but I am holding off on that and giving me this time to heal although its superrrr long and takes time to understand my body and ACCEPT that it will take time and that there will be setbacks (which I just had one because of a bad reaction to Mr good ol bacon !! even well cooked and crisp it did not agree with moi sniff sniff !!) My GI does not believe in the diet because he saw no one suceed…yet! Well I shall show him !! So thanks again for your inspiring story and giving me a boost while I was down this morning , and like you did I will continue to taper off slowly the prednisone and hope that my body adjust !!!

    Now as for the pull up contest as I am the only girl and that I have been slouching on getting some done just want to say I have not forgotten !I do have a camera I am just stuck in the kitchen way too much with this diet and teaching my zumba classes 7x week ! I lack time and a barr in my house sooooo I shall do like Adam and find a park !!! I shall be no competition for you strong men but it will be fun !!!

    Good luck to you Alex Wishing you all the best Lets be symptom free and meds free soon !!

    Mylène

  3. Allison-3
    Allison October 22, 2012 at 5:04 pm #

    Hey Alex-

    I think PATIENCE is one of the hardest lessons I have had to learn from UC. I was diagnosed February 2010 and totally assumed I’d be better in a month… I did not reach remission for 25 long months. At first it was painfully slow and then after about 6 months, everyday I felt a tiny bit better and then I strated too feel GREAT again.
    So- don’t EVER give up.
    With that said, after 6 months of remission, stress, a little too much coffee and wine, a career change and life itself landed me in a FLARE. Man- I was so pissed off at first! So, I am 3 months into the flare and it is nowhere near as bad as the first time… I have a few awful days and then lots of almost-normal days in between. I suffer from constipation (not dairrhea) but have all the blood,mucous, gas, bloating crap, too. I lost 15 pounds which totally challenges my vanity- I hate being underweight. But- then I just laugh and realize it will come back again.
    My advice is remain CALM, do yoga, meditate, walk in the woods and on the beach. It sounds crazy but it took me this flare to really accept that I have a lifelong battle with UC. But, I think if I truly commit to taking the best care of myslef emotionally, spiritually and ohysically then I will win the battle in the end.
    And I agree this site has been a lifeline for me and I really think it is so important and vital that we all do our best to offer hope and encouragement.
    So keep on keepin on.
    And hope you catch some awesome waves!
    I live on the jersey shore (LBI) and I’m a beach girl.
    All the best-
    Allison (Today I don’t even feel sick) Yahoo!
    P.S. I don’t take meds, but I take all the same supplements + an Aloe Vera/Clay detox.

  4. Blake October 22, 2012 at 7:50 pm #

    What up Alex? I’ve been there before, definately crapped my pants a few times with this terrible disease. Good to hear you’re getting your craps down to a reasonable number, I hope they stay there. As far as the pull ups, I’m thinking I should let you beat me so you can get a new camera from Adam. That would be worth it! Haha. Good luck, take care, find a camera, and get your video up.

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