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Positive Update and a Question About Dealing with Friends and Family

Matt from Christchurch New Z-land:

I have been diagnosed with Ulcerative Colitis (pancolitis) since May 2009 but had symptoms before that for about a year or so on and off. Just started remicade.

Some more about me:

From New Zealand (which is that odd looking set of Islands east of Australia). Into sports, movies, books, music etc. etc.

I just thought I would post an update on what happened to me with my treatment and give a positive story that hopefully gives a few people hope.

I am now 26 and diagnosed at 22.

I posted previously about my situation here: http://www.ihaveuc.com/remicade-and-questions-about-my-treatment-so-far/ but to those who haven’t read it I will give a summary:

I got sick in 2009, put on steroids for a couple months followed with Pentasa which got me into clinical remission (no symptoms but still inflammation), flared again in mid- 2010 and didn’t get better despite everything I tried. A long hard few years, especially the last one, I couldn’t work, couldn’t take care of myself had to move back home (which is all kinds of humiliating) and social life…what was that? Basically couldn’t leave the house in the last year as they tried different medications. I was put on Remicade in mid December 2012 along with Azathioprine and in mid March something amazing happened…I actually started getting better. Looking back I had given up that that would happen or would ever happen.

The following month the Azathioprine started kicking in which further improved my symptoms. I have basically just a bit of a gassy, gurgling gut at the moment which is slowly improving but the inflammation is down to normal levels (if the higher end of normal) and the gut is healing slowly, (which is too be expected since its been scarred and inflamed since 2009) but the best part is the fact that I now only have to go to the toilet on average around twice a day, maximum is about three unless I do something stupid like eat chocolate (rips through me for some odd reason). Without a doubt this has been the healthiest winter I have had since 2008 and the bes t I have been since June 2010, before I relapsed. I imagine there will be the odd bump in the road ahead but as it is heading into spring down here in New Zealand I expect I will only continue to improve so not to toot my own horn here but yay for me!!!
(Sorry if that last part was undignified but honestly with UC didn’t we leave dignity behind a long time ago?!)

Not surprisingly I have been in quite an ecstatic mood the past couple months! I have now got a job, moved out again, am starting to rebuild some sort of social life and for the first time in years am actually starting to seriously consider my future, which is hard, but considering the lack of one I had a few months ago? Bring it on.

I realise I won’t be able to be on Remicade forever, but considering the amount of drugs currently hitting and expected to hit the market in the next decade my doctor and I have some confidence I will be okay.

So I hope that gives some hope to some people suffering out there, I know it might feel like your never going to get better and there is nothing in your future except horrible drugs and the toilet…but maybe, just maybe, you will.

On an related subject I just want to know how people deal with friends & family who have let you down while you have been sick. I have lost so many friends while I have been ill, some were expected as they weren’t close but some were almost family and left me alone in the hardest year of my life, how do you deal with that? Do you forgive and put it off to people not understanding and having their own lives to deal with? Or do you write them off and move on without them? What about family members?

Medications I be a doing:

Azathioprine, Remicade, Pentasa.

written by Matt

submitted in the colitis venting area




7 Responses to Positive Update and a Question About Dealing with Friends and Family

  1. Adam
    Adam August 17, 2013 at 12:54 pm #

    Way to Go Matt!!!

    Congrats congrats congrats for figuring out a way to put the old UC in check. Way cool, and wishing you many many months and years of improvement. Seriously, that’s awesome news, and super happy for you.

    Not sure which is harder, getting UC to go into remission or figuring out how best to deal with your question at the end of your post… a tuffie fo sho

    I think its pretty hard for anybody besides you to understand exactly who,what,where things are at with your friends and family (before during and right now). So that said, I’ll make an educated guess that you’re a reasonable person (maybe not while on steroids…but who is right:) and I’d bet that whatever decision you make in moving forward with past relationships/friends & family is the right one.

    Some things to think about though…

    -Did you hide alot of stuff about your disease from your friends/fam when things were tuff?
    -How many of your friends did you actually take some time and talk to about what you were/are going through?
    -Do you think yoru friends/family understand right now what your going through and the general gist of the disease as you understand it?

    i guess I’d be a tiny bit bummed if you wrote off all your old friends who weren’t there for you if there’s a chance that you never gave them any insight into what you are/were going through. Mainly because I’m pretty sure they’d want to know what was happening, and they (as crazy as it may seem) may be a bit ticked that you never shared any of the details with them.

    Just a thought, and of course I don’t know the ins and outs of what was going down with you and them. so chow that grain of salt about now!

    AND

    CONGRATS again on starting to feel better. way way cool,

    -Adam

  2. Shirley NZ August 17, 2013 at 2:11 pm #

    Hi Matt from Christchurch. I am Shirley from Alexandra. Diagnosed at a similar time as you, and a couple of years ago thought I wouldn’t be here now to tell a story. At the really critical stages you think it will never end. I went into remission after 2 trips to hospital and was great for 18 mths and in May this year it all fell to bits again. I think this time I handled it with a better understanding and didn’t stress myself out so much and, I thought I can beat this and I am not going to die. I went back on my meds, sorted out my eating and am pleased to say now I don’t see blood, so things are looking up again. I learned here at Adam’s that Amino Glutamine was helping sufferers and I am on my 2nd tin now. I take it in powder form one teaspoon daily in a little water, and I think I will stay on that forever. I am 75 so my forever is not as long as yours, but you may think of trying it. I am taking 1 azathoriprine daily and hope that will keep me right and I don’t have to increase my meds as I would rather take natural.
    As far as friends go, unfortunately that happens I have had same. Back when I was 40 I got asthma and was in and out of hospital for the next 10 years and the friendship group faded out, only a few remained. They were still there but not as you would like them to be. Don’t cut them off just be yourself and friendly to all. It is the same now with my ulcerative colitis, they don’t understand, and in fact they have never heard of it, and will never really understand it. You have to be living with it to understand what us UC sufferers are going through, and then they are not fully aware. In fact I know this is gross, but I showed my Hubby and daughter just what was coming out of me when I was really bad. They had no idea.
    All the best and Keep on keeping well.
    Shirley NZ

    I wasn’t but through this wonderful site and the help and knowledge we get here it is very comforting and a great thanks to Adam for starting up the site.

  3. StormCat August 17, 2013 at 3:42 pm #

    Matt,

    I’m so sorry that you’re having to deal with this, like the rest of us… I was diagnosed almost exactly a year ago, and it’s turned my world upside down… New foods, new ways of living, new ways of driving, new ways of working, everything… Even the way I deal with friends, to a certain degree… I have to say though, I think I’ve been very lucky in this area… Like most of us, I have “friends”, and I have “co-workers” and I have “acquaintances”… It’s hard to have UC and not be open about it, so I have been very open about it… Not for sympathy sake, but for education as well as making them understand why I have to do some of what I do now…

    Obviously there are “levels” of what I tell folks… I have one very close friend who wants to know everything so that she can help me in whatever fashion she can… She’s been a dear, and I love her to death… (She’s also dealing with a spouse with Parkinson’s, so you can imagine she’s learned a great deal about health between the two of us…) Now, I also have a co-worker, who was a friend, but not super close… Through this experience, he’s watched the suffering that’s gone from the initial symptoms, to the diagnosis, to the complete change in my life… I know him very well, and I’m honest about who he is… He can be selfish in nature, and I accept that… HOWEVER, through this experience, he has really gone above and beyond in helping me to find new ways of living… When a new Whole Foods came into town, I really wanted to go but was terrified that I couldn’t find the restroom in time… (I’ve developed a phobia for shopping, which of course, activates a need to “go”) He and his partner took it upon themselves (unbeknownst to me) to go the first weekend and map out the store for me… I was blown away!!! He’s also been very helpful in finding foods that I can eat, changing the restaurants that we go to during lunch, and in general making sure I do what I need to do… He really stepped up to the plate…

    Of course, there are the others… A few folks have backed away, but I think it’s mostly out of fear because of what this condition is all about… Because it’s not something they can “see”, they’re just not sure about it… Because it deals with “poop” LOL, it makes them squeamish… And I’m ok with that… I have to be… It is what it is, and it ain’t gonna change! LOL

    I do believe that through this process I have truly found the “real” friends… I’ve also been able to educate folks about this condition to help them in case they hear someone else suffering with this… With the number of folks being diagnosed with this increasing every year, education is how we can better the situation… Education and friends…

    Good luck and hang in there!!

  4. Matt August 17, 2013 at 4:41 pm #

    Hey thanks for the replies and the kind words!
    I have a feeling you guys are right about the friends thing, it would just be cutting my nose to spite my face. And yes Adam in retrospect there are a couple friends (and definitely an ex girlfriend) who I probably should have been a bit more open about what was going on, though there are some people who just didn’t want to know, or presume you are exaggerating or faking it which sucks. So I am probably a bit wiser now and am going to be more selective in choosing my close social group going forward and at least I know who my true friends are now.
    But the thing I realised in the past few days as I thought about it more was that more than anything I am just angry at the years I’ve lost and the things I missed out on and its much easier directing your anger at a person or people than at bad luck or fate or whatever.
    Thanks again for you replies hope my good fortune is contagious!

  5. Adrian August 17, 2013 at 9:56 pm #

    Scary subject mate!
    Been dealing with a very similar situation, was very sick several years ago and the few people that knew what was happening to me either died of strokes and Alzheimer’s or simply don’t care about anyone but themselves. It causes me to fall into great depression whenever I think of the opportunities that I passed by because of UC. Very depressing!
    Kind of thought I was the only one. I’m finding new friends through support groups and things.
    As you said, you find out just who your real friends are.

  6. bron August 18, 2013 at 1:12 am #

    My Husband has UC and is currently on a high dose of Prednisone. He is always reluctant to use it and scared of the side effects. This is the highest dose he has had to take and the longest. He does not like talking about his condition and is very private about it, even with me. About 2 weeks into his current dose he has become very moody and not tollerant of our 3 young children .He began running morning and night and would shut him self off. He has now left me and says he will not see a councillor. I need to know if this is something Prednisone can cause. He just doesnt seem to be the same person.

    • Adrian August 18, 2013 at 1:04 pm #

      Prendisone is a misserable drug! I went loopy for over a month while on the stuff, it’s wasn’t until I started to taper off that things improved. It took another three months to even think about getting my shit together. Was shaking and buzzed the entire time, felt like everything in my head was in fast forward. The side effects are different for everyone.
      Been thinking all morning about your situation, depresion I find is like alcoholism, the person needs to find his own bottom and decide for themselves they want to get better. All you can do is keep your arms and the door open, stay open to communication, there’s not much else you can do.
      I found it was easier to talk to others that are or we’re in a similar situation to my own, it’s been very difficult as I live in a small rural community. It was easy form me to stay closed off and hide my pain, which was a mistake because a person can only hide so much emotional pain before it starts to define who you are. I didn’t like who I had become. Finding people to reach out to turned out to be one of the hardest things I’ve ever done, not many people understand UC and very few of them understand farming.
      Just keep the door open, May the person brave enough to walk through that door find a loveing family, a warm heart and brave sole to face the battle of emotion that brews inside all of us.

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