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gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4391
   Posted 12/5/2017 9:23 AM (GMT -7)   
Just wondering how you are doing? I hope a little better!

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 12/5/2017 12:51 PM (GMT -7)   
Hey gumby, thanks for asking.

Well, not much has changed. I still haven't heard anything from my mum or anyone else in my family. I presume she and my brother (or maybe brothers - I have no idea about the second one) went to Vilnius for the funeral and to sort out the bureaucracy and are back by now. Meanwhile, I upped my antidepressant dose a few days ago: I need every bit of help I can get to get through this Christmas. For the first couple of days it didn't seem to be doing anything, but now I think it is starting to kick in a bit.

So, yeah, basically I am completely on my own and feel like a ghost in society :-/ But I'm just taking it a day at a time for now.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4391
   Posted 12/5/2017 3:33 PM (GMT -7)   
Sorry Miranda!
So are you technically not speaking to your family? What are you thinking? Are you waiting for them to contact you? I'm glad you increased your antidepressants. Any chance of a support group??
59 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 12/5/2017 5:23 PM (GMT -7)   
Not at the moment, no. I don't feel like it: my brother's death, amongst other things, has awakened a whole load of bad feelings and memories. I don't blame my brother for that: I blame our dysfunctional parents. I used to think it was only my dad who was the bad parent, but now I realise my mum is almost equally culpable. Nor has my brother's death changed either of them. They are still manipulative and in denial. I am not in the mood for either of their mind games.

No chance of a support group either, I'm afraid. The last support group I tried (for autism) wasn't exactly a sterling success. There was an attention seeker who dominated 80% of the conversation with tedious anecdotes about himself, and I never felt like I fitted in or could become friends with anyone there.

It's certainly not going to be a merry Christmas this year!

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4391
   Posted 12/5/2017 6:17 PM (GMT -7)   
A grief support group may be different than an Autism support group. There also might be some grief support educational programs around the holidays. I hate that you are going through this all alone. Wish I could come hang with you)-:
59 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 723
   Posted 12/5/2017 9:37 PM (GMT -7)   
NCOT,

I worry about you.

I agree with Gumby. I too think that a grief support group would best help you more right now. I really don't like to think of you alone at Christmas. Wish we all lived closer together...that support is crucial..

For Christmas maybe you could volunteer? Go someplace and do something? We used to go help plan, cook and feed the homeless. We didn't always get to do what we wanted to do...but it sometimes helps...the just being in a room with others that are working towards a common goal.

Keep posting on here. I will check it daily looking for you. Hang in there!

Clo

Newmommy26
New Member


Date Joined Nov 2017
Total Posts : 13
   Posted 12/6/2017 7:47 AM (GMT -7)   
Hi NCOT I read your other posts about your brother and didn’t want to jump in. Just wanted to say I was sorry for your loss and what a brave, strong person you are for fighting through all the... well... crap you’re having to deal with.

Hope you feel better soon.


EDIT: It auto-corrected the beatiful s word into “crap”. What a letdown.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 12/6/2017 7:54 AM (GMT -7)   
Thank you, gumby and Clo. If you guys were in the UK I'd invite you to my place for a nice cup of tea. And then take you to this lovely old pub just off market square. Or we could go and look at some ducks: we're not short on ducks around here.

The volunteering is a possibility, provided I can get out of my shell for long enough to actually do it. I do have an appointment next week with my support worker and a psychiatrist. Not expecting much from the actual appointment itself (I've long since given up on my support worker as a means of support), but they can perhaps give me a few local groups or organisations to look into.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1998
   Posted 12/6/2017 10:13 AM (GMT -7)   
I can hardly believe that you have not heard from your parents!

Anyway, you have a lot of friends on here, it's just a shame that we all live in different countries!
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 903
   Posted 12/6/2017 12:19 PM (GMT -7)   
It's just an all round poopie (I almost wrote poppie!)situation.

I also wish we were closer. I like duckssmile and pubssmile Or you could swing by here and we could dine at the top of the CN Tower. I'm sure SuzyQ (who I've met) would also fly over to join us.

How is your gut through all of this? Any update on when you can start Stelara?
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing much better and more stable on Stelara. No remission....yet but closer!

IVIG on occasion.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 12/6/2017 5:36 PM (GMT -7)   
Thanks Poppie and UB. Yes, it would be nice if we could all have a HW meet-up - I'd like that :p

@UB - My stomach has not been too bad, surprisingly. The last Entyvio infusion seemed to help. In fact I even thought of asking my hospital not to bother with Stelara. But I'm leaving it, as I'm really not sure what's going to happen in the future: not just with my Crohn's and uveitis, but the country itself. We are being governed by utter, utter fools and incompetents, and I'm not exaggerating that even slightly. I was absolutely gobsmacked by that gurning, smirking, arrogant fool, David Davis, openly lying in parliament today. And getting away with it, because there is literally nothing a Tory minister can do anymore to get himself sacked.

Anyway, to cut a long story short, it's bad scenes at the moment. Very very bad scenes. Brexit has gone beyond a farce and a joke into something surreal and unbelievable, it's that bad. Anyway, long story even shorter, I'm getting my expensive meds while I still can. That said, I've not had any news about a start date yet.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15427
   Posted 12/6/2017 7:19 PM (GMT -7)   
I am sorry, but the stuff over here in the US is so much worse. It's like what you've got but amplified by 1000. That's how I picture it anyway, probably just because I am here. It is appalling. Funny how we all have terrible families and live in opposite ends of the world with butt issues.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 12/6/2017 8:00 PM (GMT -7)   
notsosicklygirl said...
I am sorry, but the stuff over here in the US is so much worse. It's like what you've got but amplified by 1000. That's how I picture it anyway, probably just because I am here. It is appalling. Funny how we all have terrible families and live in opposite ends of the world with butt issues.


No it isn't.

At least you can get rid of Trump in 3 years' time. We're stuck with the fallout of Brexit permanently. It's gone toxic, totally toxic. We aren't really being governed at all: the government has lost the plot. It's away with the fairies, it's off in some fantasy land and dragging us off the cliff edge along with it. I never voted for this: it's madness. It's insanity.

Edit: And that's just Brexit. I haven't even gotten onto what damage the Tories have done, and still are doing, to poor and disabled people. (That includes the working poor, by the way.) Admittedly, they're less likely to cause world war III than Trump is, but otherwise they are just as destructive, corrupt and mendacious.

Okay, let's talk about kittens and puppies now :-/

Post Edited (NiceCupOfTea) : 12/6/2017 8:10:23 PM (GMT-7)


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4391
   Posted 12/6/2017 8:53 PM (GMT -7)   
Trump terrifies me and yeah, Brexit sounds like a mess, but we do both live in democracies and there's hope for things to change for the better one day....history shows us that. And at least we don't live in Sryria or some similar hell hole!

But back to daydreaming about watching the ducks and a nice cup of tea....it sounds lovely! I'd seriously love to meet you in person one day! Hang in there Miranda. We are not imaginary characters, we are your real friends, just not there in person, and we all love and care about you!
59 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 723
   Posted 12/6/2017 9:16 PM (GMT -7)   
NCOT,

I love ducks... I too wish that all of us could get together... Maybe Ellen would be nice and have a get together for us...lol...I was watching her 12 days of Christmas and watching all the people jumping around...and that thought kept popping into my head...

I am very surprised that your Mom or brother have not called you. People are getting so disconnected. I hope one day that will all turn around for you..and them.

Glad to hear that the Entyvio is sort of working. I have heard that it takes a long time. One of the girls in the GI office said it took her almost 6 and a half months...and suddenly bam...it was working. I don't know if I could be that patient.

I know this post is disjointed...it was Remicade day and my brain seems to just shut down. I can't remember anything today and the words I want are like wisps of smoke just floating away...so I will wait and type more tomorrow.

Remember NCOT...we may be separated by distance...but we are all so close in so many ways.

Hugs

Clo

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 12/7/2017 6:19 AM (GMT -7)   
I'm sorry for the outburst yesterday, folks. After weeks/months of numb resignation and thinking nothing the government could do could surprise or anger me anymore, yesterday they managed to come up with something - there is no rock bottom that is too low for the Tories, but I digress.

I'm having a nice cup of tea right now :p As for ducks, I live within 5 minutes walking distance of a) the canal, where loads of ducks hang out (and two swans, moorhens, a heron, and, over the summer, Canadian Geese, but they've gone now), and b) a small pond by the roadside called duck pond, where loads of ducks also hang out - they don't seem to mind the traffic, schoolkids walking past, etc.

Gumby - Thank you! I appreciate that.

Clo - Nah, it's fine, I followed everything you said. Is it the Remicade itself or the pre-meds which affect you, do you know? The benadryl used to make me incredibly drowsy for a couple of hours, but once it had worn off then I was all right.

My antidepressant makes me groggy at times as well. Although the increased dose hasn't affected me as much as I thought it would. Which is good, as I wasn't really looking forward to a week of nausea, intense grogginess, etc.

Thank you as well.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15427
   Posted 12/7/2017 9:51 AM (GMT -7)   
We have a bunch of woman hater, sexist, harassers, and even pedophiles in office here. We have no protection for the poor, sick or elderly. They can't even afford insurance, and there aren't many programs to help them. The streets are covered in tents, with addicts and mentally ill. We have a president who calls other leaders childish names and has the maturity level of a teenager. The tax reform that's likely to pass is only going to benefit the rich and corporations. it feels like the people have lost their say.

I am exhausted today. Slept terribly, pulled something in my neck... I would much rather drink tea and watch ducks than work, but I have way too much to do. We have interesting birds, but I am not in a place where I can duck watch too easily.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 903
   Posted 12/7/2017 10:28 AM (GMT -7)   
Oh Ellen---please grant us an xmas HW meetup! Thanks Clo---it's my turn to be groggy. Struggling with yeast but also re-started my anti depressants and I think my pupils are diluted. I feel gross and stoned. But at least I managed to put makeup on todaysmile

Going to bundle up and walk the dog. No ducks close to be now but maybe I'll get lucky and see a bunny.

Pursue Stelara NCTO. It may be worth it to at least get the process going. It's been a year on Entyvio which is long enough to see if it works.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing much better and more stable on Stelara. No remission....yet but closer!

IVIG on occasion.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11046
   Posted 12/8/2017 7:04 AM (GMT -7)   
My pond is frozen solid and it's cold and snowing here. Plenty of visits at our bird feeders though (Black-capped chickadees, American Goldfinches, Tufted titmouse, and others). Ducks had the right idea and migrated south to warmer climates. As next week the high is going to be only 12 degrees Fahrenheit (-11 Celsius) with an overnight low of 2 degrees Fahrenheit (-17 Celsius), brrr. Going to throw a few extra logs on the fire, and an extra blanket on the bed for sure! The UK sounds delightfully tropical in comparison smile

In the end, we cannot control politics. I find ignorance to be bliss, unplug from the news for your mental health. Following it closely will only be depressing, drive up your anxiety, and do no good. As NSSG says the UC is a total mess, politically on this side of the ocean (a big man-baby who is ruining everything he touches). I try to listen to/watch as little news as I can. Really don't care which celebrity he's having a twitter war with, what country he's trying to go to war with, etc. At least here in Vermont is a very liberal and sane place (like NSSG's California is also). In fact, a town here in VT publicly said they'd arrest our last conservative president (George W Bush), should he visit. I'm sure they think even less of our current one! In the end, everything balances out, and although it seems dark now, there will be change and new politicians, and new policies that are likely to lessen the damage done, both here in US and in UK. No sense obsessing over it.

Post Edited (iPoop) : 12/8/2017 7:15:10 AM (GMT-7)


NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 12/8/2017 8:26 AM (GMT -7)   
And I was thinking 3 degrees Celsius was cold >_>. Provided I had enough heating (a log fire sounds perfect), I would love to experience a mad cold winter. Winters in the UK were somewhat colder when I was a child: not as cold as yours, obviously, but we had more in the way of frost and snow. Now most years we don't even get any snow or about 2 flakes if we do. That said, last year the canal froze for a few days and I'm hoping it does the same again this year. I took pics of the ducks on the frozen water but had a rubbish phone camera at the time, so they didn't come out well. But now I have a decent phone with a deece camera.

As for the news, I don't follow it extremely closely, but I do follow it to some degree. This week was particularly important for the UK and Ireland. As it so happens, the immediate threat of a 'hard' Brexit has passed. Which means the UK's economy will probably survive, although Brexit has been, and still is, an absolutely spectacular waste of time and money. Apparently Daily Mail readers are frothing at the mouth at May's "betrayal" - I can only hope this means they abstain from voting and let Labour in at the next election. But boy have I lost faith in most of my fellow countrymen and women.

F27
Veteran Member


Date Joined Feb 2016
Total Posts : 875
   Posted 12/8/2017 8:48 AM (GMT -7)   
If you want to get a sense of Canadian winter, check out the show "Fargo" on Netflix. They filmed it in and around Calgary, and Mrs. F27 and I love playing 'spot the landmark'. Most of the scenes are set in winter so it's very easy to get a feel for just how bleak it gets around here for 5 months of the year.

A few years ago we spent Christmas at Storm Mountain Lodge. The temperature on Christmas eve was -25C, and we were burning log after log to stay warm. As fun and cozy as it was, I don't want to do it again.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11046
   Posted 12/8/2017 8:57 AM (GMT -7)   
Yeah winters in the UK are pretty mild from what I've heard. A few years back, my sister-in-law was stationed at Royal Air Force (RAF) Station Lakenheath, at Suffolk in the United Kingdom and she told me about winters there. She's enlisted in the USA airforce and they move her around at their whim.

It certainly can be mad cold here in winters lol. We get lots of snow and have it pretty much from December to March. Pretty to watch fall, fun to play in, but a real bugger to drive in. Especially when we get 1-2 feet (30-60 centimeters) in typical snow storms here. You make the best of it and play in it as much as you can (ski, snowshoe, snowmobile, etc.) and drink copious amounts of warm drinks afterwards smile

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 12/8/2017 9:21 AM (GMT -7)   
Apparently it's the gulf stream which keeps the UK relatively warm in winter compared to similar latitudes in the US and Canada. So if that ever fails, I presume we can expect a new Ice Age in Europe, or something.

@F27 - I can't even imagine what a temperature of -25C would feel like. Apparently it got very cold in Vilnius, where my brother lived. I dunno about -25C cold, but certainly much colder than we'd ever get here.

@iPoop - Sounds chill. Literally :p

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15427
   Posted 12/8/2017 9:31 AM (GMT -7)   
I used to like the cold until I lived in western NY. I mean, I didn't like it, but I tolerated it. At a certain point, I just felt like I was losing a lot of time to it. I prefer to spend time outside, with windows open... CA is great, but chilly right now. I wouldn't mind if the nights were a little warmer. Should be in the 70s today.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15326
   Posted 12/8/2017 10:12 AM (GMT -7)   
I do not like it cold & neither does my body. It was 29 this morning which is cold for where I am in Tx. They had some snow south of me towards the coast & in some areas it has been 28 years since they had even a flurry. Even in the cold I have bundled up & been out in the sun. I have to have sun to motivate. It will be in the low 70's by Monday. For now it's layering shirts for me.

I take my grandson to a pond by his house to fish. We love feeding the ducks & seeing their babies. They are use to people & kids fishing there.

At my house I feed birds & squirrels. The squirrels appreciate the peanuts & so do the blue jays. The blue jays can clean out a feeder of peanuts faster than the squirrels.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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