Ulcerative Colitis Tips


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Stupid UC

My Colitis Right Now:

Currently I’m having my first flare since diagnosed and what I guess was remission for the past year. The first time was some blood but mostly diarrhea. I went from 205 lbs to 155 at my lowest. Today it’s mostly just bloody water after a movement. Bloating and gassy too.

About Me:

I was an outgoing man who worked in construction. I played pool league the nights a week. On weekends I’d spend time with friends at the local brewery. That all came to an end when I first came down with UC.

My Story:

It’s something when I described it to my friends and family that I wouldn’t wish on my worst enemy. 10-20 bathroom trips in the middle of the night. Scared to eat I became anemic.

My first GI visit seemed to go well we set up a colonostopy. After yeah my colon was completely irritated. I tried some of his sample drugs. Not sure if they worked. My flare was really bad. Even if they did I couldn’t afford them. Then went to a cheap drug sulfasalzine. Didn’t seem to help but turned my pee yellow. Of course Prednisone. Really the only thing to kind of help but of course the side effects were concerning.

At the end of the first flare I was put on anthrosorizine and another drug I forget the name but after the first month my pharmacist flagged it and said he needed to talk to my GI before refilling. Strange enough I hadn’t heard from either again for a year and half.

Weird as it may sound I had started smoking medicinal grade marijuana to spark my appetite while I was sick the first time. Whether or not it helped with my remission I’m not sure but it did help with the stress which I believe mine is derived from.

I’m now getting a referral to a new GI cause my trust had been broken with my first. I couldn’t even get him to prescribe me Prednisone to help till I could see my new GI in the city closer to me. Oh yeah I’d moved recently. An hour and half away from my first GI.

So here I am now down to my last four pills hoping they and my weed will hold off a bad flare till I met my new GI. Wish me luck.

I’ve read about everything out there medication wise but my hands are tied with cost. I last looked at Entyvio and laughed out loud at its outrageous cost. My medical marijuana is all I’m on. Does anyone use it? Has it worked for you?

written by Salomon

submitted in the colitis venting area




3 Responses to Stupid UC

  1. DebraK May 7, 2016 at 1:35 pm #

    The cost of trying to get well and stay alive are too crazy. I have anxiety about the costs after I retire–unsure what they’ll be. In FL this fall we vote (again) on medical marijuana. The Sheriffs Association is behind the bill this time so hoping it will pass. It will be approved for Crohn’s, in pill form only. I thought I was slowly going into remission using L-Glutamine, Turmeric, and Probiotics with my range of Rx drugs, but about 10 days ago it all went down the tube. I have no idea what happened. I am getting so tired of trying to figure out the pattern of my disease…too many variables. ‘Feeling really down lately…feel your pain. My memories of feeling good have mostly faded…many times it’s overwhelming. I shouldn’t whine, though, many people have it worse than me…

  2. Ravi S Pandey May 7, 2016 at 8:53 pm #

    Most of the drugs in US of A are outsourced from developing countries (mostly China and India) They become very costly .You can ask some of your friends in developing countries to send these drugs to you( if it does not violate some law)You will get good quality drugs at the fraction of the cost in USA

  3. Sher May 11, 2016 at 10:45 am #

    Hi,

    Just wanted to share… After a 2 month baaaad flare & trying every supplement combo out there I think I finally got control with adding 2 things to my holistic approach… Psyllium seed powder & DIY probiotic enema! I know sound bad, but actually way better than I would have thought! And both very cheap at my Natural Grocer store. In a few days I started having formed stools, I am also gluten free BTW and have been for a few years.

    In the evening about an hr after dinner I take A Tsp of psyllium seed Powder (not husks) and mix with about 1/4 c water… I take it like a shot, then I drink a few cups of water after, bc it recommends to stay hydrated w that.

    The probiotics I never had success with taken orally bc I think my stomach must have destroyed before reaching my colon, so I found an article online suggesting the enema, I thought what do I have to lose nothing else has been working and I’ve tried EVERYTHING! So before bed I mix about 1/8 – 1/4 c purify or distilled water w a packet of 10 billion probiotics (I think any good one should work) the article suggested #3VSL but I couldn’t find, so I got something similar. I use a liquid plastic syringe I got free from the pharmacy… I just ask for a liquid medicine syringe, they gave me like 3. It usually takes me 2 enemas to get it all in. It’s kind of soothing actually. The 1st couple days I woke up and expelled some in the middle of the night. Now I’m sleeping through the night with formed stools in the AM. I feel it may be cleaning out some of the build up in there!

    FYI this is all just a suggestion of what is working for me at the moment! Who knows, if tried other people’s suggestions with zero improvement, so each is different. I just was excited that this has worked for me so fast and wanted to share! Good Luck

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