Had some tragic news

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U B Tough
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Date Joined Aug 2015
Total Posts : 904
   Posted 11/30/2017 3:50 PM (GMT -7)   
F27--- 100% Miranda has brought us together. I'm learning more about people outside of their disease and have found so much in common. (Got me wondering if family dysfunction has some impact on IBD).

You also had me laugh at "ewww". So thank you for that.

Miranda - i too have always been the one to reach out to my family. That's just how it is and being the bigger person sucks especially in times of distress. Your entire family is hurting and unfortunately crisis holds a mirror up to previous family crap. Everything spews out.

i'm very worried about you. I think you started seeing a psychologist? Can you reach out to him/her? Or call the crisis line thats part of Chrons/Colitis foundation? You need in person support....

How can we help? Have you eaten today?
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 : 10098
   Posted 11/30/2017 4:52 PM (GMT -7)   
Thanks folks. I'm calmer now, but must admit my thinking went down a path earlier which scared me sh!tless :/ I feel so alone. My brother's death isn't my first loss this year. Over the summer I lost a friend as well (not to suicide, he had a heart attack). I say 'friend', but we had a bad falling out a couple of months before his death - as much, if not more, my fault than his. I miss him too, although in the general scheme of things I hadn't known him that long - about a year. I don't know how to get through this, I honestly, truly don't.

I do have one good friend, who I was texting tonight: that helped. But I don't like to lean on her too much, as she has her own problems too.

Anyway thank you everyone. I'm drinking a cup of tea, because that's, well, what I do. Drink tea :-/

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 11/30/2017 5:08 PM (GMT -7)   
Sorry UB. I'll answer your questions. I saw a psychologist a few months ago, and I'm seeing her again on the 12th December. It's impossible to see a psychologist or counsellor regularly on the NHS; you just get these scattered appointments every now and again, and if you see the same person more than twice you're doing well. In fact my local mental health service was going to discharge me, but apparently changed their mind at my last appointment. However that doesn't mean I get help; it just means they have delayed kicking me off their books for the time being.

This is the reality of mental health care treatment under the NHS after several years of being systematically and deliberately starved of funds by the Tories. It was never a wonderful service but now it's so bare bones it makes skeletons look overweight by comparison.

I do have a so-called support worker, but she's on leave more often than she's at work. I hardly ever see her and when I do, she's just fake and annoying: she doesn't seem to have any understanding of mental health issues. Again, I was meant to have stopped seeing her by now but that's been extended for a bit longer.

I won't phone a helpline: I hate talking on the phone I'm afraid :/

I have eaten. In this cold weather I need something hot to keep me warm :-/

clo2014
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Date Joined Feb 2015
Total Posts : 724
   Posted 11/30/2017 9:51 PM (GMT -7)   
NCOT,

I too worry about you. Please do not think you do not serve a purpose. During some of my darkest moments you were there...and you didn't even know it. I would search and read your comments and it helped ground me, it helped me finally dig in and get the courage to accept what was at that time unacceptable. You gave me your strength when I didn't have any of my own. You helped me and many others with your no nonsense approach to problems we were too close to be objective to. There were times when I had lost hope and the road was so very scary....and you brought me through it...safely...and a little wiser... I wish you lived close to me. I just want to give you a bunch of big hugs.

You are our friend. You are special and unique. We care about you more than you know. Please stay strong. When you feel the need for a shoulder to lean on or someone to vent to...we are all here.....

Hang in there my friend!!

Clo

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3321
   Posted 11/30/2017 10:07 PM (GMT -7)   
Miranda, I agree with every single thing that people have said. You DO have a purpose. You do. You have made a tremendous difference to me, and I think of you and things you've said to me on days when times seem the most difficult.

Please, please, please don't give up.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 12/1/2017 6:08 AM (GMT -7)   
Thanks Clo and scifigal *hugs* ;-;

I'm calmer today. Took some amitriptyline and codeine last night, which fortunately kicked in and I slept fairly well, albeit for some disturbing dreams. I'm just going to have a very easy day and try not to think too much.
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 : 15435
   Posted 12/1/2017 8:46 AM (GMT -7)   
You are important to me too Miranda.

Was the friend that guy from the coffee shop that you had a falling out with? I am sorry about your friend. You've been through a lot this year.
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 : 15335
   Posted 12/1/2017 9:21 AM (GMT -7)   
NCOT, thanks for enlightening us about the drink. Like Randy, I was thinking what the he$$, lol. You really have no idea how many people you have helped in this forum. Sometimes just posting hi, sorry you are having trouble can go a very long way with a person. When I joined HW back in 04 I think it was, it was this forum that saved my sanity. I was not in a good place mentally or physically.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 12/1/2017 4:03 PM (GMT -7)   
Thank you both.

nssg - Yes, same person. His heart attack came as a shock to everyone. Admittedly he was pretty overweight, but he was only in his early 60s. He was always having stomach problems and taking gaviscon tablets. Looking back, I wonder if he was mistaking chest pains for indigestion sad

straydog - No problem: I hope you get a chance to try the deliciousness that is Horlicks one day :p I agree about HW helping. When I joined nearly 8 years ago I was in a bad way after a decade of undertreated disease. If I can help somebody avoid months, or even years, of ineffective treatment, I will try to do so, as I've been in that boat and it's not fun.
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)

CCinPA
Veteran Member


Date Joined Dec 2014
Total Posts : 942
   Posted 12/7/2017 3:52 AM (GMT -7)   
I am so sorry to hear this. I hope that things are slowly getting easier for you, but I suspect it will be a long while of roller coaster emotions. Be kind to yourself and take care.
58 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission since 10/16, confirmed by scope in Dec 16. Current meds: Entyvio 7/22/16, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). omeprazole. OTC: Loratadine 1/day, multivitamin 1/day.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 12/7/2017 6:34 AM (GMT -7)   
Thanks CC.

I do feel a bit better, but I suspect that is because I have increased the dose of my antidepressant. It's worth it if it gets me through this month and Christmas, however.

dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1964
   Posted 12/9/2017 8:46 PM (GMT -7)   
NCOT my thoughts continue to be with you. Really sucks when your family is not! Okay, you supply the tea, what would you like us to bring? Sweets, sandwiches, carrot fries, whatever you like? Even though we can't be together in person to comfort you, we sure can be there in heart with you, to share a tear or two, a word or two or more, you can even share your anger, and a virtual big hug from all of us.

LoL, what do ducks like to eat, or is there a sign that says "Do not Feed the Ducks"!


((((((( HUGS ))))))))))

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 12/10/2017 6:24 AM (GMT -7)   
Thank you, dorri, that's really kind of you. Sandwiches and sweets sound good to me. Not sure about the carrot fries though: they sound a bit healthy... ¬_¬

Ducks like bread but too much bread is bad for them, and so you should really feed them other stuff, e.g. peas (not frozen ones obviously), corn, oats and seeds. Doubt a bit of bread does them any harm, but when it's all that people feed them, then it's kind of obvious that it's a pretty unbalanced diet really. Anyway, it snowed last night! I was not expecting to wake up to any snow, but I did :p So after lunch, I'm going to walk down to the canal. I'll take a photo of the ducks to show you guys.

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8038
   Posted 12/10/2017 8:46 AM (GMT -7)   
"I'll take a photo of the ducks to show you guys."

yes please !
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1964
   Posted 12/10/2017 10:17 AM (GMT -7)   
Love to see your ducks as well. Snow, it seems like we have that for almost 6 months of the year and having no insulation on my skinny frame, it chills me to the bone.

LoL the carrot sticks cut lengthwise, are stirred in a little bit of oil, salt, pepper and cumin spice and then roasted, Yah, a little bit too healthy and they don't go with Sandwiches. Do you prefer the pinwheel sandwiches or regular.

Lets set a date for this virtual get together, it will be a day to honor your brother's memory and put some closure to his passing and to comfort you as well

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 12/10/2017 11:26 AM (GMT -7)   
Hey folks, I'm back >_>. I'm sorry, the ducks didn't come out as well as I'd like. It was better last year, when the whole canal was nearly frozen over but for one small patch of water - the ducks were treating the edge of the ice like the beach; some were sunning themselves on the 'beach', while others kept on jumping in and out of the water.

Ducks:
VIEW IMAGE

A pair of swan parents and their nearly grown-up youngster:
VIEW IMAGE

Canal bridge:
VIEW IMAGE

Another canal pic 'cos I couldn't decide between this and the previous one:
VIEW IMAGE

I also had a text and an email from my dad a short while ago. Bit scared to check the email in case somebody else had died, but it wasn't that. Apparently my mum had asked my dad to give him the details of the phone me and my mum had decided upon for her friend's Xmas present. My dad also added cryptically "She might just be weakening a bit on the "I'll never, never, never..." front." Never, ever what? Just come out with it straight, you pair of raging drama queens.

I had forgotten all about the wretched phone. To be honest, I'm not entirely convinced my mum doesn't remember it, since it's basically a more recent version of her own phone, a Moto E4. It would also still be in her tablet's browing history, I'm sure. On the other hand, my mum is technologically clueless, so it might be a genuine request. Either way I'm annoyed as hell and in two minds about whether to tell my dad what phone it is or not.

@Dorri - Oops sorry. I had seen your post, honestly! I had to google pinwheel sandwiches: they look like sliced wraps. I like wraps and sandwiches about equally, but the pinwheel ones look a bit small to me: I like something you can properly bite into.

As for dates, I'm pretty much free any time, so I'll leave it to other people to decide :-/

Post Edited (NiceCupOfTea) : 12/10/2017 11:32:33 AM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15335
   Posted 12/10/2017 11:38 AM (GMT -7)   
NCOT, these pictures are wonderful. It is amazing getting to see scenes like this, I am a snow fan. In the part of Tx I live, snow is rare.

Hit the ignore button on the pair of raging drama queens, lol.
Susie
Moderator in Chronic Pain & Psoriasis Forums

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 12/10/2017 12:18 PM (GMT -7)   
Thanks straydog! This is the first real snow we've had in years. The north of England gets snow a bit more reliably, but in the south you can go years without seeing any snow on the ground.

As for my mum, why can't she just phone me up like a normal person? It's not a dislike of speaking on the phone, because she's always phoning various people up. So weird.
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)

dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1964
   Posted 12/10/2017 12:38 PM (GMT -7)   
That is so pretty, it must even be more spectacular in the summer time? Is your snow here to stay...or will this soon be melted?

I suggest Thurs Dec 14th to get together on the Forum, if it is okay with you Miranda (NCOT) and everyone else? What do you all think, any other suggestions? Drop in on the board on the day, share some comforting words, a hug, a tear, a story, enjoy the virtual sweets and platters. We are all together at heart to help Miranda put some closure to her brother's passing.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 12/10/2017 1:24 PM (GMT -7)   
Thanks dorri. Nah, this will be gone soon - snow never lasts more than a few days here. But the canal does look very pretty in the summertime; it's incredibly green.

14th December is okay with me. I'm not sure what to say, except thank you so much for the thought.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11050
   Posted 12/10/2017 3:30 PM (GMT -7)   
Glad you got a taste of winter with some snow! Funny we were just talking about it the other day within that other post... I got too much my way, so glad you took some of it. Better than mailing it in the post lol.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

U.C. = Unimaginable Crapnado

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3321
   Posted 12/10/2017 4:49 PM (GMT -7)   
I think the 14th is great - I'm planning it in my phone now. smile

The pictures are lovely! I live in Houston, and we even had snow this week! Like an inch! I was so excited. Winter is my favorite season. I love the snow and the cold, brisk days, bundled up inside cozy with a fire and hot chocolate.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1964
   Posted 12/10/2017 11:39 PM (GMT -7)   
Yes, will make a note of the 14th as well.

I love hot chocolate as well, I make up my own with cocoa and just a little bit of sugar which isn't as sweet as the already prepared one?

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 12/11/2017 5:37 AM (GMT -7)   
Sadly the snow has already mostly gone ;_; Glad I got out yesterday and didn't wait until today.

@scifigal - Agreed about winter being my favourite season! It's nice to find a fellow winter lover. Normally all I hear are people moaning about the winter; and then, when summer does finally arrive, the weather and how it's never hot enough. (Or, on the three genuinely hot days a year, how it's too hot.) I must be weird because I love the cold, brisk days and the dark evenings. The only thing I'm missing is a real log fire - or, heck, even a fake log fire.

@dorri - Depends on how much sugar you add, but no, it probably isn't as sweet. I'm fond of hot chocolate as well, but don't drink it very often for some reason. I tend to drink tea at home and coffee in cafes. Time to buy a jar of cocoa from the supermarket and have a quality cup of hot chocolate: I've even got some vanilla extract I can add to it :p

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8038
   Posted 12/11/2017 6:00 AM (GMT -7)   
thanks for sharing the pics M smile

winter is my favorite season too - just wish the days were longer - hate it getting dark so stinkin early !
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !
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