Got my blood and stool test results at long last

Brilliant, brilliant, brilliant.

I wrote a long-ish post to the IBD nurse and lost it, 'cos I got logged out of PKB while I was writing it - I didn't spend that long over it. Had to spend twice as long (because I burnt out halfway through it) writing another post that I don't think was as good. Still, it's done and sent - basically I told her I wanted a scan or scope before starting any medication and asked her to ask my GI about it.

I haven't emailed the stoma nurses. I almost did, but then thought what's the point really? They can't do any more than the IBD nurse can. Less in some ways, because they aren't in direct contact with my GI.

Gumby - Yes, I think it's quite low down, so most likely at the surgical join. After two reasonably 'good' days, the pain, nausea and gurgling in the lower right quadrant have come back to a degree. It actually would probably be a lot worse if I wasn't already used to managing a stricture from my Crohn's disease: I know how to manage my food intake to cause the least symptoms. It's boring and it's crap, but it doesn't take many partial obstructions at all to convince me to stick with it.

On the bright side, my chicken stock came out well. Now I just need to find something to do with it <_<. My first idea is to try making egg drop soup (leaving out the veggies of course).

Edit: Got a reply from the nurse. She said she'd left a message for my GI. She also attached a low-residue diet sheet - I just had to lol. I know she means well, but I could follow a low-residue diet in my sleep: I've been micro-managing my diet for years. (Vastly less so with the ileostomy, but even that you can still have partial obstructions, which absolutely sucks.)

Post Edited (NiceCupOfTea) : 10/6/2015 6:49:55 AM (GMT-6)

Gumby, check the edit to my last post. She got back to me quickly, to be fair.

I'm going to chance nipping out to the shops now. Stomach is still hurting a bit, but the pain has mostly subsided. Speak to you later.

Hope your GI gets back to you soon! And at least the nurse is trying, lol. I'd rather have them give me information I already know than to not give any information at all.

I am glad you are testing for MAP!

Not my GI as such, but the IBD nurse got back to say he was ordering an MRI scan. I still don't know when the date is: the booking office will probably send me a letter.

Oh, and I'm going to try and persuade a nurse to give me two extra vials of blood on Monday to send off to a MAP researcher in New Zealand - wish me luck <_<. Canada Mark has arranged it all, really - my only task is to get the blood off. By sheer luck, I'm having a blood test done on Monday (thyroid function test), but if the nurse drawing the blood won't agree to it, I'll have to chase it up with somebody else. Most likely my IBD nurse, who'll love me even more.

Just got back from spending the day at my parents' house. Stomach been playing up all evening, but at least I could mostly hide it by lying around and doing nothing at all - something my parents are well used to. Drive home was a tad hair-raising but I made it. I'm gonna take some codeine now and go and lie in bed... :-/

PS: How are you doing, gumby?

Oops. I read your post before, gumby, but was feeling too braindead at the time to reply. Well, you know me. If there's no new notifications, I completely forget I ever read anything - sorry! :-/

Anyway, I'm glad the Cipro worked so well. I wish the IBS could be sorted out as easily, but I really do think that Crohn's does a number on our digestive systems. Even when it's in remission, the legacy of scarring from past inflammation, bowel surgeries, SIBO, certain meds, etc. continues to screw things up. I never had IBS as an adult before I got Crohn's (as a child I did have chronic constipation, but when that sorted itself out my digestive tract was as good as gold).

Are you back from your Canada trip yet? Either way, I hope you are having/have had a really nice time. Canada is one of the countries I'd like to visit if I had the opportunity.

As for me, the only exciting thing that happened to me is getting my blood test done yesterday :-/ I did ask the nurse about having two extra vials of blood. I'm certain she would have agreed if it'd been down to her, but unfortunately she was new and wanted to check it out with somebody higher up. The higher up nixed it, natch. I'll need to get the researcher involved in this - a John Aitken in New Zealand - to request permission and put my full name in it. So ridiculous. It will delay it by weeks, which I'm seriously pissed off about.

@Gumby - Sorry to jump in but out of curiosity what part of Canada are you visiting?

I'm about 12 hours away from there, but recently went to Montreal. While there for work, I did the odd touristy thing. More specifically both myself and my work associate forgot the name and location of the side street where I parked my car and we literally spent 4+ hours walking around downtown Montreal at night trying to find it. Was the best thing ever, because we came across all these little stores, restaurants etc that we would have just passed by if we were driving.

I will however say the best 'tip' I got was from the local person we went to meet for work. He asked if I enjoyed nature and hiking, and when I said yes he told me to go to Mont St. Bruno which is just a few (~30 mins) away from Montreal.

Wow... is all I can say. It is a small mountain, where there is downhill ski trials on one side and nature trails and hiking on the other side and all these small lakes you can walk around at the very top. There is also the most amazing private residences located on the mountain that you come across while walking around. Just google 'Mont St. Bruno' and off to the right look at the pictures of it. I honestly want to live there! It was that beautiful. It made quite the impression on me.

Now - I must also say that I was on a high dose of Prednisone when I went. It was a beautiful sunny day and I literally walked the entire trail due the the excessive Pred energy! haha. I love that darn drug. Also due to this washrooms were not an issue. But if you enjoy walking/hiking and are able to, this would be the spot to go. But I would say perhaps avoid or use caution if washrooms are an issue.

As for Quebec City... It's just so beautiful everywhere it's crazy! Then again, England is full of old architecture and stone, but to me it was wonderful as there is not much of that where I live. In any case I am sure you will love it.

Post Edited (Canada Mark) : 10/14/2015 12:15:16 PM (GMT-6)

That's ok....I'm from Northern Michigan, so I'm used to cold weather....can't wait to go!

Oh.. haha. I thought you were from England as well. I have some family in Grand Rapids. The snow piles up pretty good there ! Anyway, do enjoy :)

JaSanne said...
Hi NiceCupOfTea,
I haven't been here much, and only quickly in and out as concentrating on anything is just not happening for me lately. Am I reading the posts right that you may have a stricture after your surgery? That did happen to me at the anastomosis site. It was pretty miserable until I had a dilatation. If I'm mistaken, just pardon the question. I hope whatever it is, they can figure it out.

Holy crap, can I relate to the bolded part.

Yeah, you're reading them right. Truth be told, I have no idea what's going on - my symptoms are all over the place. Today I went out this afternoon with my parents and the crazy urgency returned. I tried going to the toilet twice, but neither visit really relieved it and I just wanted to get back home. Other days the urgency is much less, but I have more pain or whatever. And my sleep is so bad most nights - interrupted by freaky dreams or needing to get up to go to the toilet.

I haven't heard anything about the MRI scan. I haven't heard anything from the MAP guy. I'm getting that bit closer to just asking my surgeon to give me the ileostomy back when I see her in November.

Been through a really bad couple of days. I took every med going last night (paracetamol, tramadol, zoplicone, imodium) just to get one bloody night's sleep that wasn't taken up with getting up to go to the sodding toilet every hour - by 5 or 6am it starts getting seriously old. It semi-worked, but not as well as I would have liked.

I'm getting in touch with the IBD nurse Monday to find out when this sodding MRI scan is due.

@JaSanne - I go endlessly. However, I don't pass a lot of stool most of the time. If I pass more stool than usual + fart voluminously, I know I've brought myself some breathing space for a while.

I've given up expecting doctors to warn you of possible side-effects. Even if you ask them, they'll be vague about it and just say one or two obvious things like, "you'll be going to the toilet more often than usual" (o rly?). They will never mention anything as specific as scar tissue causing narrowing at the anastomosis site. It won't happen to everyone, but it seems to happen to a substantial minority, if the j-pouch folks on the Ostomy forum are anything to go by. I know, anecdotal evidence is no evidence, but I'm still surprised by the number of people who've had dilations - one woman had 5. She didn't have sedation and I don't know how she managed it, quite frankly.

Anyway, I'm hoping that the MRI scan does show something wrong. Probably sounds weird, but it places me in a very weak position if it doesn't. To me, there's no way this sh!t is IBS, or whatver. I can't go on like this for another 2.5 years, let alone 25 years. I'm so sorry for what you went through for all that time.