Just Diagnosed With UC

Hi Everyone:

I am 44 yrs old and suffered abdominal pain and visits to the toilet on average 15 times a day for 5 yrs or so…. did nothing about it really. I had my colonoscopy in February this year and two days later was rushed in to hospital with a suspect perforated colon..5 days of morphine later was sent home and this is where the mix up occurred, I thought there was nothing wrong as told but this turns out was just that there was no tear in the colon. The consultant had already sent a letter to my GP about UC, he didnt pass it on to me so I just left the symptoms raging away. Then in August this year had a letter from my GP informing me of the outcome of the original colonoscopy .. you guessed it …I have got severe UC…left for ages to fester.. today is my first day with the Enema, suppositories and the oral tablets 4400 mg per day…. is this usual and what can I expect now…my wife and children have been amazing, but what happens now?

What can I expect in the future and has anybody had problems with employers?

Anonymous UC’er

6 thoughts on “Just Diagnosed With UC”

  1. Hey buddy,
    First off, you are in many ways an amazing person to be able to deal with severe UC for so long without keeling over. I thought I was amazing for dealing with some symptoms for quite some time before figuring out what was going on, but you for sure blow me out of the water!

    I’m still in shock from reading your story. On a whole different note regarding trying to move forward, and what to expect…? I highly recommend you read some of the other personal stories on this site if you haven’t done so already. There are heaps of others who have gone into all kinds of details about their expereinces after being diagnosed. And the underlying theme that I see is that everyone’s case is different, but you can for sure see some similarities in many of the other’s stories from the site.

    Is it rare or strange that you are taking enemas and 4400 mg/s of pills each day? No, that’s not strange or unusual at all. I was doing the same at one point in my treatment.

    Is it possible that you might try some medications and then switch over to other medications? Yes, infact, it seems that most of the other UC’ers from this site and others I’ve spoken with do just that until something is found to work well (or better than other/previously tried meds.)

    Honestly, its hard to even think of what to write as a comment to you this moment, after reading your story, it just blows me away as amazing and almost hard to even believe(man oh man you are a fighter, and I’m so happy you finaly got properly diagnosed!). My guess is that you probably started to believe that 10 plus craps per day was actually in some way normal, crazy to think, but I was doing that too for far too long before my wife drove me to the urgent care when I told her the truth about what was flying out of the doodie hole daily.

    1. Hi Adam.

      Thanks for the support and kind words…I am a week into the meds….cant decide if doing anything at the moment. still going to the loo an amazing amount of times..I think the realization of UC has come home….ordered the hottest curry the other day, just normal for me the following morning….happy days and wtf..Ive already decided not to turn life upside down…wife and kids need me and they all really understand…my five year olde was drawing round the enema tube the other day for a lamp post!!!!!

      Getting a few minor side effects, night sweats, tight muscles or joints cant decide which controls which.

      my wife wondered about the surgery route and the effects this has …if you know anyone let me know in the meantime best wishes and happy days


      1. Hey Julian, colitis can bring out a whole new person, and I hope you find some positive in all that is going down, it sounds like you are.
        As for the night sweats, tight muscles/joints… I had all of that. I can remember clear as day now that you mention it, waking up in the middle of the night and feeling like I had literally jumped into a swimming pool and then gotten in bed. And to fix that, I would wear a shirt before I went to bed, and take it off after the first wake from the sweats occured, and then put on a new shirt, and then sleep until the morning.(this made it so I wouldn’t have to wake up my wife and completely change the sheets like I had to do the first few nights until the shirt changing plan came up…)
        There are quite a few people who have had surgery who are on the site, and as the days go on, we are bound to have more stories from ulcerative colitis people’s who have also had the surgery.

        best wishes to you and your family too,

  2. Hey man,
    it’s great that your family has been so supportive for you. Read up as much as you can about UC and strategies for dealing with it. After a while, you will get into a routine with the medications. I have been taking pills and doing enemas and suppositories for a good decade or so. It is a pain in the ass – literally. I hope the meds work some wonders for you. Keep us informed.


  3. My story is similar in ways. I think it’s a male trait to ignore symptoms for longer than necessary. I lived with symptoms for years until seeing a Dr. “I have work to do, I can’t take time off, I’ll make an appointment next week.” I’ve known men to have symptoms who I was sure they had UC or something similar, but just delt with it. A lesson to teach others, when you ignore problems they grow into something much worse later down the road. It might seem obvious but I didn’t follow this advice. I’m out of hospital about six weeks now, I spent three in hospital,and I haven’t been able to return to work. One GI told me it would never have happened if I had of stayed on the purinithol, although I’m not necessarily convinced of this.
    We don’t live forever but who wants to spend many years with needless suffering?

    1. I don’t think it’s just a male trait to ignore things. I’m a female and I ignored my symptoms for about two years brushing them off as hemmoroids. Then I got diagnosed with UC. It’s just wishful thinking and hoping that things will turn around on their own.

      I only wish I would have looked into a more natural approach to therapy like the SCD way back when I was first diagnosed. Medicine’s are good to get rid of flares, but if we can get onto a natural path to healing, it is much better and healthier for our bodies in the long term.

      If you haven’t already, research the SCD on http://www.breakingtheviciouscycle.info/ I wish I would have found this years ago but was too stubborn to look for a natural approach thinking that, like all the doctors say, “diet does nothing.” They are most certainly wrong! While, with some, it may not be a cure-all, it definitely helps most of us. It is a very strict diet, but well worth it if it works for you!

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