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.

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