Tuesday, April 2, 2013

Coming To An Understanding: Crohns Disease

My name is Elise, and I have been diagnosed with Crohn's Disease. It has been 7 days and 4 hours since my specialist told me. And I still don't know how I feel. I'm not even sure that I feel anything. I have known there was a possibility of Crohn's since last November. And I have been taking medication to control/manage Crohn's all this time.

My surgeon was giving me mixed signals. On the one hand she was telling me that she would hate to diagnose me with Crohn's, and that there were other possibilities that she was hoping for. On the other hand she was telling me how so many people have Crohn's that manage it easily with little to no impact on their lives and not to worry to much. Lifestyle wise, it's like being diagnosed with diabetes she said.

 My specialist seems to be spoon feeding me my fate in bite sized portions. Each appointment seems to bring some new, awful information that seems like something I can't handle. But handle it I do. There was a time when the prospect of a week in hospital had me sobbing and depressed, begging the doctors to release me. But I made it through a 6 week stretch. The concept of a ileostomy bag had me in hysterics (you may have heard of a colostomy bag? same, same), but I am living with it day by day, and no longer cry when I have to deal with it. The latest is that there is a possibility that I will need to inject myself daily with medication. Me, who am a needle phobe, who has learnt all kinds of restraint to allow cannula's and blood tests but still cannot accept a vaccination or medication needle from a trained nurse may need to inject myself daily. I have not had a needle putting something into my body (unless under a general anaesthetic) other than a cannula since the Rubella needle in high school. And I was held down for that.
Photo taken 2 days before admission to
hospital in October. I should note that 18
 months prior I weighed 110 kilo's.  All those
bones have some flesh on them now & my
face has filled back out after losing even
more weight while in hospital.

He tells me something incredible with the straightest face. He tells me that Crohn's can be terminal when not managed. That I was slipping down that corridor of an unbelievable outcome when I was admitted to hospital last October. From the vantage point of April, 15 kilo's heavier, the stamina to pick up my children again, and the ability to do so without pain, this seems incredible. Completely unbelievable, melodramatic, you name it.
He doesn't tell me much beyond the current treatment. We don't really talk beyond what will happen between now and my next appointment. So I'm starting to be scared of my appointments and what new information he will introduce. I know now that my operation in March and the upcoming ileostomy reversal procedure in June is not to be my final hospital stay. I can expect another Colonoscopy in September. Is it possible I can expect regular Colonoscopies for the rest of my life?

My mother speaks to me about my diagnosis with a hushed voice, as though to a dying person. Friends who know someone with Crohns are incredibly positive, almost dismissive in their reassurance that this is nothing, I am strong, there is nothing I can't handle. A friend who has Crohn's looks at me with sympathy in her eyes, and doesn't say much. She just offers to help if I have any questions. This scares me a little, because if she's not rushing to reassure me that it's no big deal like everyone else, then maybe it is a big deal.

The treatment and lifestyle changes sometimes upset me till I come to acceptance. But the diagnosis doesn't. I feel like it should but Crohns Disease is still just words to me. I've read the pamphlet and it still doesn't give me any emotional reaction. It talks about "flare ups", avoiding them, managing them, but it doesn't tell me what a flare up actually is. Is it indigestion pain? Is it a recurrence of damage and deterioration to my organs? Vomiting? Why do I care about flare ups?

It's time to start understanding my condition better I think. People who care for me have done their own research in an effort to be a part of what I am going through and to be there for me, but I have been living with my head in the sand. I think I will start by looking for blogs of people who share this disease with me. I have read the clinical information and it's not enough. I want to understand the lives of people who have this disease.

If you know of a blogger with Crohn's disease who sometimes writes about it, please feel free to share the link. If you live with Crohn's disease yourself, I'd love a comment to tell me how you find life.

20 comments:

  1. I have no words. I don't know much about Chron's except what I just read on wikipedia. It sounds like you are taking it all in your stride, as well as any one can expect. Sending you lots of virtul love and hugs. x Aroha

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    1. Thank you xx I appreciate the support and completely get the lack of words. I can barely find them myself to articulate what's going on in my head so far but it feels good to get it out on the blog

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  2. Heylo,
    Rah sent me along to visit as I've had Crohns for ohhhhhh 9 years now & could write a book on it. I'm so sorry you've had to join this club but I guess the good news is, you'll only get better from here. Now that you know what you're dealing with, you can medicate it and manage it and keep on top of it so you don't end up back in hospital having what sounds like an emergency ileostomy? Not fun :(

    So I guess the most confusing and frustrating thing about Crohns is that it affects everyone in different ways. There are actually 3 types - fistulising (you get fistulas between your bowel & skin or bowel and vagina or bowel and other places. Not nice!), stricturing (your bowel narrows to the point where nothing can pass and you need those bits of bowel cut out eventually), and plain old inflammatory (you get lots of inflammation, ulcers, pain, maybe bleeding, but no fistulas & no strictures). The course of your disease very much depends on which of these types you have.

    Also, everyone responds differently to different foods & meds. So when someone calls you all excited because their cousin's nextdoor neighbour's half-sister's ex-boyfriend has crohns & he found that cutting out wheat cured him miraculously, thank them kindly for their help but know that it doesn't mean much for you. We all have our food intolerances & they're all different. When you're flaring, most people find it best to stick to a simple low-fibre (low-taste) diet of white things. Rice, pasta, white bread, potatoes, chicken. They're easy for your gut to digest & shouldn't upset things too much. Lots of people find keeping a food diary to begin with is helpful in figuring out what foods upset their guts & which foods are ok. I personally can't have chilli or onions but everything else is fine. Others can't handle corn or fruit.. Whatever works for you.

    So a flare will look different on everyone too. For me, it's excrutiating stomach pain, maybe vomiting, lots of diarrhoea. It's easier to put it this way: When you're not flaring, yo'ure like everyone else. You go to the loo like a normal person, you eat almost like a normal person, you aren't doubled over in pain. When you're flaring, you get a resurgence of whatever your symptoms are: Diarrhoea, bleeding, pain, vomits, ulcers, fistulas, whatever.

    Finding the right drug can be tricky and you may have some trial & errors, but once you do find the right meds to keep you in remission it's wonderful! You almost forget you have this stupid disease :) Im curious about the one they want to inject you with daily? Most are weekly or fortnightly. Do you know what it's called? When I had to inject myself, I couldn't bring myself to do it so had a friend, family member, or my local GP surgery nurse do it for me. No shame in that - you'll figure it out. Funnily enough I had no issue injecting my dad when he was diagnosed with cancer last year. It's much easier jabbing someone else - see if you can find someone who'd be willing to jab you.

    There's a bunch of us hanging around this forum: http://www.ibdaustralia.org/forums/
    We're very friendly & between us know almost everything about Crohns so please come on over & say hi. Ask as many questions as you need & tell as many embarrassing stories as you like. We've all been there :)

    It's not going to be a walk in the park but you WILL manage this disease & find you have days where you forget you even have it. Hope that's helped a little bit. All the best and please ask me to clarify anything I've said here or ask more questions. Being diagnosed with anything sux to begin with! All the best
    Anna

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  3. Also? Yes, expect regular colonoscopies for the rest of your life. BUT they get easier every time. I've come to look forward to them, just for that feeling when you're counting backwards from 3 and getting higher with each number heheh.

    They do become less mortifying, less traumatic, less annoying with time. The prep even begins to taste tolerable ;)

    Finally, I forgot to address your biggest question: what's life like?

    My disease seems to be on the more serious, more difficult to manage end of the scale. I usually have 4 - 5 weeklong hospital stays a year and I've escaped a colectomy by the skin of my teeth (bowel) a few times. Mainly because my disease is in both bowels bowel, stomach, and mouth so a colectomy wouldn't actually do much. I haven't found a drug to keep me in remission so I'm waiting to start a clinical trial of a new drug aaaaany day now.

    BUT despite all this, I go pretty well. I spent a month in the US over Christmas without any hassles at all. I worked full-time for a while there but am now studying full-time instead. I go out with my friends most weekends, I go out to dinner regularly, I travel, I hit the gym when I'm well. I know the location of every public toilet in Melbourne but I do ok and you will too. Chin up :) Anna

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    1. I cant thank you enough for your comments - at a time like this I am stupidly emotional (thanks to prednisone) and I was just so happy that someone who doesn't know me would share so much. Thank you xx
      The medication my doctor is slowly educating me on is Infliximab/Humira, and it just goes to show the bite sized portions he is giving me that I didn't realise (I assumed) it may not be daily. I've just reread the handout he gave me and it doesn't say how often I will need to have it.

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    2. You're so welcome, Elise xx Aaaah pred! Love to hate it haha. Such a bitch of a drug with those side effects, but so damn effective too. Hope you're managing to get some sleep on it. Worst!!

      Excellent I'm glad it's Humira & Inflixi they're looking at. Inflixi was miraculous for me. I felt better within about 4 hours of my first infusion. With that one, you're only looking at a monthly (I think) infusion..done in a hospital by lovely nurses who run it through a canula much like you had in hospital last time, and you don't even have to look heheh.

      Humira is the fortnightly injection that you're supposed to do yourself. This is the one I took to my GP's nurse to do for me every fortnight as I'm a total wuss. However, you can get a pen version instead of a needle and it's much easier. you just hold the pen against your skin and it does everythign for you - much easier than a needle!

      Whichever one they go with, I've no doubt you'll see a huge difference and will be feeling amazing in no time! (Without the icky pred side effects!) Good luck!
      Anna

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  4. Fairy wishes and butterfly kisses lovely. I am sorry I don't have anything else to offer. I have never had much experience with this disease or anyone who has it. I hope you come to terms with it easily and are able to adjust to the changes smoothly

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    1. Thank you! Butterfly kisses are enormously encouraging, and are more than enough. xx

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  5. Best of luck with the disease. It must be a terrible shock. Big hugs from over here.
    Carolyn

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    1. Thanks Carolyn! I love my little blogging world for encouragement xx

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  6. I know very little about Crohn's but can imagine it must be pretty hard to come to terms with your diagnosis and what that means for your life now ... hugs ...

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    1. Thanks Jane, I appreciate the support xx

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  7. That sucks Elise. Know I'm thinking of you and sending you cyber hugs x

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  8. Elise, I am a journo and have interviewed and been heart broken for many Crohn's peoples. I have to say, no one can imagine what you are going through, but we can try and accept and have empathy! Hang in there :)

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  9. It's very hard to comment without sounding like the 'same same positive' things that you mentioned everyone is kindly telling you. I do hope you come to terms with it soon and you find all the support you need. I have a good friend who has also just been diagnosed and I have passed on your blog to her. xx

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    1. Thanks so much, hopefully your friend copes well

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  10. That's a huge thing to have to come to terms with!
    I'll admit that I don't know a lot about Chrones, except that it's not very fun. I hope you find it easier than you imagined though xx

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    1. Thanks Jess - I appreciate the kind words xx

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