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Posted 8/6/2013 12:59 AM (GMT 0)
Do your animal shelters have websites like they do in the US? I like to click around and look at the dogs even when I'm not actually getting one. Maybe that's where you can start. You don't even have to leave your house, and you can feel like you are getting started:)

Oh, and thanks for responding to my other post too. The whole process is getting rather ridiculous. We already knew I have Crohn's in my ileum. It has been confirmed in the past by Prometheus blood tests, positive biopsies, CT scans, and the pill cam (the first time around) I just don't get why he couldn't just assume that I am in a flare and treat it as that. Oh well...I'll just keep plodding along.
Posted 8/6/2013 1:32 AM (GMT 0)
Yeah, they do have websites... Okay, that's where I'll start then >_>

No problem. I do understand the frustration of having tests and then nothing ever being done. My current GI was the only one not to mess me about. My previous hospital did all the right tests, but their response was a joke. They kept saying they didn't do more than 3 Remicade infusions and kept on finding reasons not to give me even those 3 infusions.

My theory is that there simply aren't that many meds for Crohn's and so some doctors would rather prevaricate endlessly, trying the same few meds over and over, rather than just admit they aren't working for that patient. But you're far from the point of having failed medical therapy and I reckon a more proactive doctor would probably have had you on a new med regime by now. Are you still going to get a second opinion at Chicago?
Posted 8/6/2013 12:58 PM (GMT 0)
I'm waiting to take the blood tests that the hematologist ordered for next week and then my appointment with my GI is on Aug. 25. If my bloodwork is fine, I might just wait, or if my GI will prescribe Pred. Going to Chicago will be very expensive because I am out of network with my insurance (a good old USA problem). I still think I can maybe get my GI to work with me....I think I have classic Crohn's in my ileum....this shouldn't be such a complicated problem. If I get nowhere, then I'll have no choice and just spend the money and go to Chicago.
Posted 8/6/2013 2:12 PM (GMT 0)
Just checking in to see how you are. I hope your feeling a bit better. I am thinking of you.
Posted 8/6/2013 7:09 PM (GMT 0)
Thank you, figsk8.

I was doing a bit better until I got online... >.>

I dunno. Some days everything just seems to irritate me. Sometimes it's justified, IMO, but other times it's probably more me just being snappy. Today is one of those days. I truly, truly wish I could be one of those nice, sweet souls who never had a bad, irritable, or cranky word to say to anyone. And who never complained about anything which had happened to me. I wouldn't know who I was if I was like that.

But apart from that, I am doing okay. Very, very slowly getting to accept the stoma, but it's not easy: I feel like I am having to learning to do this entirely alone, without support from anyone really. The folks on the Ostomy board make it seem so simple and easy and for me..... it's just not like that.

Probably wished you'd never asked now, sorry... :-/

@gumby - Ah okay. I didn't realise it would be that expensive :-/ In that case I understand waiting to see your current GI. I hope the SBFT pushes him into doing something, finally. As you say, shouldn't be that complicated: Pred and the next step up in medication, Imuran or 6MP. Heck, I could do your GI's job for him :p
Posted 8/6/2013 7:53 PM (GMT 0)
Hi NCOT,
I can't take 6MP because we tried that and my liver enzymes immediately elevated. But, yeah, I made the same comment to my husband...at this point I feel like I know what the options are...If I could prescribe meds and do my own lab tests, etc. I could probably do a much better job than my doc at this point.

I would hate it if you turned into one of those nice, sweet souls, BTW. Your challenge is to get to like the person that you are, and have more control over your feelings, thoughts, behaviors, etc. Easier said than done, I know! I hope you are able to connect with the therapist and it helps. Take care and thanks again for all your support.
Posted 8/6/2013 10:16 PM (GMT 0)
*small whinge* Urgh, once again I felt a sense of discomfort and urgency strong enough to propel me to the bathroom: it's just like having Crohn's again! >_>.

Nah, it's not that bad. It's not even 1% as bad as it was before surgery, but it does indicate inflammation and ever-receding hopes of a ileorectal reconnection.

Gumby, ah, I forgot about that :-/ I suppose Imuran would do the same thing, since it's such a similar med. I'm not 100% certain about that, so possibly it's still worth a try. There's also methotrexate, which is more of a chemotherapy agent but is used in Crohn's and RA as well.

There's not much else in between the 5-ASAs (largely useless for Crohn's, tbh) and the biologics... :-/

I'd like to be a nice, sweet soul, because then perhaps I'd stop feeling perennially guilty for being so impatient and irascible <_<. Believe it or not, I have more control than I used to, but I was crazy when I first got online. I wouldn't have lasted on HW for 2 seconds. It felt like I had a bottomless well of anger to draw from - actually it still does! I've said sorry to most people who count, but there's a couple I've never seen again and wish I could, just to say sorry for being a horrible person.

Eh, this has turned into a bit of a melancholy reflection.. :-/ Thank you, gumby, for what you said, truly. I hope the therapist helps when I (eventually) get to see him again.
Posted 8/8/2013 2:00 AM (GMT 0)
NCOT, glad you are still on.... would miss you very much, keep us posted on the dog! Hugs to you!
Posted 8/8/2013 2:37 AM (GMT 0)
Cheers, s. aunt. Hugs back! :p

This is just a flying visit >_>. My brother has come down from oop north (don't know how long for yet), so I'll actually have a few things to do and probably won't be around as much. To be honest, I've been feeling like I could sorely use a break from the internet, as I go on it way too much anyway. However, I'm owing about six emails, so I gotta get online soon to write those :-/

I'll keep you posted on the dog as well. I dunno why I just don't get on with looking for one, gah... :-/

Anyway, goodnight folks :p
Posted 8/8/2013 2:53 AM (GMT 0)
we foster dogs that are in need with a couple of dog rescue mobs here in south Australia some stay with us for months some only days ..we have 3 dogs of our own all rescues :-) 2 german shepherds and one a kelpie x shepherd . look on face book there would be lots of dog rescue people near your area . most of them are always looking for foster parents for there dogs .

its a good way of having a dog without having a dog lol

hope your feeling better soon
cheers dean
Posted 8/8/2013 3:17 AM (GMT 0)
Genuinely my last post of the night! >.>

Do you just foster one dog at a time? I think my mum would have a heart attack at the thought of having a pack of dogs about the house... <_<. Otherwise, it sounds like a thoughtful thing to do.

Cheers, Dean :p
Posted 8/9/2013 12:28 AM (GMT 0)
Hi NCOT,

I am soo sorry to hear of your struggles and depression. I have Crohns and am in the midst of a flare right now. (you have responded to some of my posts in July) I also have severe depression. My heart goes out to you because I faced surgery to remove my entire colon and wasn't sure I could handle it emotionally. I didn't end up having surgery afterall.

I want to tell you about my dog Bentley. He is a 1 yr old Cavalier King Charles Spaniel(named after King Charles of England where the breed originated from) and he has been my constant lil buddy during this flare. Cavaliers are known for the love they show their owners and I can tell attest to that! He has stayed by my side constantly over the past month and licked my tears when I cried. He has run to the bathroom with me everytime I had to go and would lye on the floor till I was finished. (I think he was worried??) I can do nothing wrong (lol) and when I walk in the room he wags his tail so hard his whole body wiggles! I have never felt more loved by anyone before and believe me I m not always very lovable!! I don't know where I d be without my lil buddy!

Anyway, if you are thinking of a dog, please consider this breed. Sounds like you need a "Bentley" of your own. Dogs can do wonders in terms of therapy, dog therapy, that is !

NCOT, I will keep you in my prayers and am sending you hugs. I wish you healing of your body and mind.
Posted 8/9/2013 1:19 AM (GMT 0)
Managing to find a gap in my busy social whirl to pop in for a few minutes... >_>

Or, alternatively, once again I'm staying up way too late on the internet. I've at least got one email written and sent off; one down, five to go! They'll have to wait until tomorrow now, unfortunately; it's just got too late.

Brenda - Thank you massively for your post. It's perhaps a bit self-centred to say if I could handle my colon being removed, virtually anyone could. But arguably, I haven't actually handled my colon being removed at all well, so that's probably a road better off avoided going down... <_<.

I saw this image today and it so reminded me of my surgery, it was painful: Expectations

Your dog, Bentley, sounds lovely. I've known a few spaniels and they've all been sweet, nice dogs. We used to have a Jack Russell terrier. He was evil-tempered with other dogs, and miserable around children - he never growled or snapped at children; he just looked dead miserable while they stroked him. He liked us, but not many other people. I do like terriers, but the small ones can have a chip on their shoulder to the point of having a Napoleon complex. Spaniels lack that chippiness, I feel.

I've already done more than normal by going for an evening walk with my mum and brother... <_<.

*yawns* Goodnight folks :p
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