The Health Notice

In recent years I’ve been diagnosed as ‘possible Crohn’s’ to ‘probable Crohn’s’ to ‘perhaps Crohn’s’ to ‘positively Crohn’s’.

It’s been a somewhat winding road and, I think, in some ways that hasn’t been a bad thing. At first, I was just relieved that I wasn’t suffering from ‘probable or positive bowel cancer’ (up there with best Christmas presents of all time). Then, quite quickly,  I shifted right over into denial, which, truth be told could have challenged the behaviour of any unruly teen (NO! I DO NOT HAVE CROHN’S! I REFUSE TO HAVE CROHN’S! SOD OFF WITH YOU!!!) Slowly, I wandered toward acceptance. OK, with the odd, ‘I think I’ve magically recovered’ moment.

Now I have a new doctor, and a full diagnosis, and although I wouldn’t exactly describe myself as delighted, I am OK with the diagnosis.

But then I started having issues with my joints. Particularly in my fingers.

It’s made typing difficult and that’s one of the reasons I’m hardly writing at the moment.

The great news is that the good doc is filling me up with medicine which should tell my immune system to take a break and stop attacking my bowel and my joints.

As you can imagine I squealed, “Yippee!” And handed over the arm that already looks like a pin cushion to test and retest and retest (many times again) my blood. Note to world: if you need an extra to play the role of a junkie in your next film/TV show/play – I’m your girl.

It will take three months or so before I’ll know if it’s working but so far I can report that: my five-year old has stopped asking if I’m pregnant (as my tummy only looks empty or full and not as if someone rammed a punch balloon in through my belly button), and the instances of a numb bum and the consequential funny walk that could impress John Cleese, have been significantly reduced by curtailed toilet sitting.

But my fingers are still rebelling against me.

I’ve informed them though: this is 2012, if the drugs don’t work, I can always resort to dictation software!

P.S. Please don’t worry about me getting bored. Immune suppressants really do what they say on the box. They wreck suppress your immune system. I am constantly being entertained. Todays new illness: a stye. (Can you hear me whooping?)


51 thoughts on “The Health Notice”

  1. How difficult for you… at least you have a diagnosis now. I hope the immune suppressant doses can be tailored to suit you better.

    1. Thank you Pseu! I feel quite optimistic.

      I haven’t written about this subject before and I decided it was time. Plus I wanted to let you all know that I haven’t forgotten you and I still want to blog!

  2. Hiya Love. Bummer (lol!) about the immunosupps. I keep telling docs to p’off when they mention them since I’m still trying to get knocked up! Can you get Glucosamine supplements easily over there? I found those and cod liver oil where useful for the joints. You should def take a decent multi vit/mineral coz all us Chronies are low in iron & folic acid. Vxx

    1. I’m going to look into the Glucosamine supplements. It’s really difficult here as the chemists are just out to make a quick buck and just try to sell you the most expensive products. I looked into cod liver oil before and the chemist instead tried to sell me a whole lot of medicine that would cost us 100 Euro’s a month (that’s on top of all the medicine I’m paying for from the docs).
      I wondered about Omega 3 I read about it possibly helping and I guess that could be what’s in cod liver oil and it’s affordable.

      My doctors are testing my blood regularly at the moment because of the immune supps. (was every 2 weeks, now every month) and I’m not deficient in B vits at the moment (I was folic acid deficient for a while but it’s better again) though I was verging toward anaemia. It’s a bit odd because my Crohn’s specialist thought I was because of my skin and other symptoms. I’ve been reading up and I strongly suspect that I’m not absorbing vitamin c, when I take a supplement of that I feel much less fatigued. Also I have a mega issue with magnesium. I’ve asked all my doctors and they don’t seem to know of it being a problem.

      I am an enigma. 😉

  3. Dilemma: Do I click ‘Like’ or not? I don’t ‘Like’ that you’ve been diagnosed with Crohn’s, that your joints hurt or that your arm resembles a strainer. I ‘Like’ that things should start improving for you and I ‘Like’ that you’re able to tackle it with humour.

    Decision: I won’t click ‘Like’ because I can’t quite decide whether I should or not, but at least you know I hovered! 😉

    People used to tell me Crohn’s in rare and yet I know several people with it. I’m glad the treatments are so much better than they used to be. Fingers crossed (maybe not literally) that everything will get better for you now. x

    1. I feel like that about the Like button sometimes, same thing on Facebook when someone is having a rough time. I wish instead of ‘Like’ it said something that more encapsulated a feeling of wanting to express support for what the person has said, which would apply to being happy for them, or sympathetic towards them, or just enjoying what they’ve said – can’t quite think of one word that would cover all of that though! Hehe.

      Anyway, sorry you are having a rough time Ms Sarsm, I know that can be very debilitating.

      1. I’ve said that so often on FB. I thought about a ‘sorry’ button. I think a ‘dislike’ button could be used in an offensive way,

    2. I ‘liked’ that you described my arm as a strainer. I might use that one. 😉

      I think I’m really lucky in that nowadays there’s so much they can do for Crohn’s and in ten years time there will be even more. So I feel quite optimistic.

  4. I know you’re not looking for sympathy but I am sorry that you are going through this. I know it’s worse than you make it sound and I admire the sense of humor you are able to maintain, especially since I know how much you love to write. I have just said a prayer for you and I hope you find enough relief to be able to write again more often. Your wit is missed.

    1. That’s such a lovely comment Linneann. You’re right, I’m not looking for sympathy but I felt it was time to write about in. One reason being it’s a big part of my life and who I am and I guess that’s the case for other people too, perhaps even some of my readers. Another reason is that I have had longer periods of absence from the blog and although this time there were also other reasons (which I’m presently writing up) I wanted to explain that.

  5. Fear, denial, anger, acceptance. Knowing what ails you is better than fearing what ails you.
    Perhaps humankind should stop examining space and in stead find cures for diseases.
    I wish you the best, dearest Sarah, and I hope the medicine will aid you in your battle against the discomforts of life. The toilet isn’t that interesting after all, and aching joints are no pain in the butt, but you know what I mean. Feel better soon, sweetie.
    Come here for a big hug and let me know if I can do something for you.

    1. I think those with their hands on the purse strings could often dish out the cash in places it could be better spent.

      I’m happy though, that I live in an age where there are so many amazing medicines. I’m also asthmatic and the medicine that I’m now on has turned my life around. It took a while to find the correct combination and I suspect that could be the case with this illness. But I’m sure there’s a light in that tunnel!!

      Thank you Mar. I might just pop in for that cuddle one of these days!!

  6. Even though you may not like you diagnosis, I know it must bring some piece of mind in a way. But steroids can have so many side effects on the body, especially long term, I hope they work well and you get to stop them. I took them for my disk hernias for a week at a time and they worked well but the pain came back as soon as I stopped so it did ziltch for the inflammation. I know you said you can’t find holy basil pills in Germany but I really think you should keep looking. Look they have it on Amazon Germany.

    I want to bet you start with 2 pills a day and within 2 weeks your pains will be gone. Then you can take one a day for maintenance and I’m sure it will help the inflammation in your belly too. It really is holy and I’m saying this from first-hand experience.

  7. I’m sincerely sorry you’re experiencing such a pain filled situation but, there are helpful meds and, I hope you don’t mind if I pray for you ~ All blessings to you ~ Sincerely Deborah

    1. I very much appreciate you praying for me. Thank you. I’m convinced that some set of meds will work. I might just need a little patience.

    1. I seem to get it all the wrong way around I cry when people are nice to me or when my (or even other people’s) children do anything remotely appealing at all and I laugh at misery. I’m sure there’s a psychiatric bed somewhere with my name on it!!

  8. Poor you 😦 Crohn’s is no easy thing to live with – I wish you all the best as you battle through this. Being ill all the time is not much fun – I hope you stay well enough to keep writing (with or without speech recognition software). We would miss you if you weren’t here 🙂

    1. Thank you Ken. Your comment is much appreciated. I’ve tested the software, it’s, frankly, crap, so I’ve decided there’s no choice but to find an instantaneous cure!!

  9. Yikes! Sorry to hear about your news. I’ll keep my tumor over Chron’s any day. But I do know what you mean about your slow progress toward a diagnosis. It took almost a year and a half for them to figure out what was wrong with me, and for most of that time there was the possibility of Multiple Sclerosis hanging over me. A tumor sounds bad, but really, the kind I have is a dream compared to being diagnosed with MS. Hang in there.

    1. So, firstly, I’m so sorry, I didn’t know you have a tumour. I understand what you mean about MS, I am filled with horror at the thought. A family member has it, but when we talk she’s horrified by my Crohn’s story and wouldn’t swap so maybe we just get used to our own illness’ and principally; how to deal with them.

      Are you getting help with your tumour? Will it be operated on?

      1. No operating. I’m currently undergoing radiation therapy. I’ve been periodically boring the blogosphere with tales of my woe, but it really isn’t as bad as it could be. My partner takes an immuno -suppressive medication for his ankylosing spondylitis, and he’s doing quite well over all. Now he gets to worry about me for a change. Hope your treatment turns out to go better than you hope.

      2. You, Janiie, could never be boring!!

        I wish you every success in your treatment too. Life throws some shit at us, doesn’t it?

  10. Sorry to hear of your diagnosis, Sara, but with a plan of action you should do alright. Immune systems are irky things in the least. My whole family is plagued with some kind of immune system problem. My oldest daughter has Lupus, I have Fibromylgia and lately Rheumatoid Arthritis and my granddaughter is a mixed bag still…the jury is still out as to what all is wrong. But life is never boring and as my daughter would say, “Mom, we’re just high maintanence!” So, now you have joined the ranks. I wish for you all the best. Take Care!

    1. Thank you Renee. I think you’ve hit the nail on the head there – a plan of action. I think that’s where I feel a bit lost.

      Your daughter sounds like a proper star! I hope they find out what’s wrong with your granddaughter soon and can help her.

  11. I just saw this post now and was dumbstruck 😀 I was diagnosed with Crohn’s 2 weeks ago. I’ve written about it in my 101 in 1001 update. I didn’t know for weeks what was wrong with me, but I’m glad I know now and by taking my pills I feel much better. Hope you will be alright as soon as possible. Wish you all the best! Take care!

    1. It is good to know what it is exactly, isn’t it? I will pop over and see your update soon. Mine is worth several posts – but I have so much going on at the moment, I don’t have time to write it (it, or anything else!!)

      I’m so glad to hear you’re feeling better with the write medication.

      Take of you too. And keep in touch and let me know how you are getting on!

      1. Oh yes, I’m so glad I finaly know what it is. I’m not very happy with the diagnosis, but at least I can treat it, even if that means taking pills for the rest of my life. It’s still better than the alternatives my doc told me about, like holes in the bowel 😀
        I will keep up updated. I’ll see what the doc says on the 25th 😉
        Let me know how you’re doing 🙂
        Have a nice weekend 🙂

      2. I know exactly what you mean. It’s good to know that it’s something you can treat and try and live with, isn’t it?^But then on the other hand you know you have to learn to live with it.

        I will let you know how I’m doing, and I’m glad you want to keep in touch.

        I had a great weekend, my friend took me to see Rebecca the musical as a birthday present. 😀

      3. Yes…the learning to live with it part is a bit nasty 😀
        I’m glad you had such fun this weekend 🙂
        I had to study all the time (exam looming over my head :D)
        But I’ll be in Italy soon for 10 days, so this compensates the loooooong nights and endless pages of information about methodology 😀
        I’ll be more than glad and happy if we can keep in touch and exchange our information on the health and food topic, as well as the strange ways of German lifestyle (they still manage to surprise me sometimes :D) 🙂

      4. I still have 17 days to wait before I can get into the rented car and drive down to Italy 😀 I can’t wait and I’m counting the days as you see 😀
        Thank you! The exam went surprisingly well, hope it will be a decent grade 😀
        Have a nice weekend! 🙂

      5. Thank you! Yes we had, even if I had 40°C temperature Sunday night and high temperature ever since till today 😦

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