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UB....how are you? NCOT....where are you?
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Crohn's Disease
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 2324
Posted 6/20/2017 9:14 AM (GMT 0)
UB and NCOT,
Haven't seen either one of you on here lately.
Just wanted to say Hi and see how you are.
Clo
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 6/23/2017 2:17 PM (GMT 0)
Still alive! :-/
It's been an odd few weeks. I messed around with my antidepressant, not sure whether to stay off it, stay on it, or try to reduce the dose. But I've finally decided to stop it completely. I wasn't aware of how horribly groggy it was making me until I ran out of it for a few days. When I went back on it, I could barely function for grogginess some days and so I thought sod that.
But I've been having problems with my Crohn's, in particularly pain and abdominal cramping, and with neuropathy/itchiness. I've just started taking Vitamin D/B12/Magnesium supplements. The vitamin D is mostly for bone health, but hopefully the B12 and magnesium will knock the neuropathy on the head and improve my fatigue. (Although it's already much improved just from stopping the duloxetine, it would be nice to have more mental clarity/less brain fog.)
Crohn's, I dunno what I'm going to do about
. It's been a bit better the past few days, but I was getting to the point where it was seriously bringing me down. Meanwhile, there's no meds left for me to try: I'm literally waiting for Stelara to come out next year.
It just feels like strange times at the moment. Politically and personally. Some very odd people around (no, not me <_<.)
clo2014
Veteran Member
Joined : Feb 2015
Posts : 2324
Posted 6/23/2017 9:37 PM (GMT 0)
Well Hello there NCOT!!
I was wondering how you were. Antidepressants can have side effects. I haven't ever taken them but I have friends that do and they have to be vigilant. Not saying I haven't needed them...only that I haven't taken them. The methotrexate and Remicade messes up enough brain cells as it is.....but sometimes I have these meltdowns and I wonder. ..
I am sorry to hear about
the Crohns being more active. I haven't experienced an "off" time since I was diagnosed. I have noticed that for me...low vitamin D levels leave me foggy headed and fatigued...so hopefully the extra wit D will help you also. I take 6,600 mg per day. Blood tests every 6 weeks and I am still always low...
So are you on no meds for your Crohns right now? Have they not ok'd stelera over there yet? I started tumeric for my joints....darn Crohns arthritis. ..and Noticed that it help alittle with my bloating and inflammation. Just a thought....although it doesn't seem to work that much on my knees this week. The stelera.....have heard that it is helping many people.
Hey......I resemble that strange person.....wait. ....I probably am that strange person!! But yea, I know what you mean. Sometimes you just need a break.
Glad to hear from you. I guess you realize that a bunch of people watch for you on here.....we all enjoy your posts so much.
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 6/23/2017 11:17 PM (GMT 0)
Hi Clo :p
Tbh, I'm a bit down on antidepressants in general. I think they have their uses, but I also think they are overprescribed. Overprescribed, given their side-effects and withdrawal syndromes that is. (I've been lucky on that front; some people wouldn't be able to stop duloxetine/Cymbalta cold turkey, the side-effects would be way too horrible).
I dunno, depression is often a temporary thing for people. In some cases it can become chronic and disabling: that's when it's time to try an antidepressant.
I'm taking 9000mg of vitamin D for a month, 6000mg for another month, and then 3000mg a day for maintenance, as per the instructions given on dosages. I'm using a spray 'cos sprays have superior absorption to tablets apparently; sprays do bypass the digestive tract, which can be compromised in Crohn's as you know. At any rate if you're interested in trying a spray, I'm sure you could find one on Amazon or wherever.
Nah, I'm still on 6MP and Entyvio. And until recently on Entocort too. Unfortunately I don't think the Entyvio has done a lot, but I will know more when I get tests done after a year of being on it (started last November).
Not sure of Stelara's status here! I just googled it... Was licensed in November 2016 as a treatment for Crohn's apparently. So it is available and perhaps I can start it at the end of this year then.
Nah, I'm thinking of strange
and
obnoxious. I was trying to put it in a more tactful way <_<.
How are you doing? I wish the meds didn't give you such bad brain fog :/ I suspect it's more the methotrexate than the Remicade - it's an old-fashioned chemotherapy drug and brutal along with it.
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 6/24/2017 12:53 AM (GMT 0)
I've been thinking about
you too. Happy to see you check in. I know it sound strange but I enjoy hearing from you.
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 6/24/2017 1:13 PM (GMT 0)
Thanks nssg :p
U B Tough
Veteran Member
Joined : Aug 2015
Posts : 1176
Posted 6/27/2017 10:04 PM (GMT 0)
CLO and NCOT!!! Hello
Clo---that's funny. I posted a "shout out" message for you about
3 weeks ago
Plucky---how are you doing as well?
I'll post my stelara update in a new thread......thanks for the message.
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 6/27/2017 10:50 PM (GMT 0)
Hi UB :p
I managed to order a mini SNES today. They've been going out of stock faster than somebody with IBD runs to the toilet, so I was well chuffed with that.
(What do you mean, you don't know what a SNES is?? It's an iconic Nintendo console, guys!)
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 6/28/2017 11:52 PM (GMT 0)
Are you guys kidding me? I had a snes in highschool and it was awesome! Loved the old role-playing games like final fantasy!
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 6/29/2017 12:10 AM (GMT 0)
Nah, it's a real thing!
/www.nintendo.co.uk/Misc-/Nintendo-Classic-Mini-Super-Nintendo-Entertainment-System/Nintendo-Classic-Mini-Super-Nintendo-Entertainment-System-1238330.html
Hopefully you can find it for sale somewhere, iPoop. There is definitely a US version (it's $80 I think). It looks somewhat different to the EU version, but pretty sure it has the same games.
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 6/29/2017 3:41 PM (GMT 0)
Cool thanks, looks like it has all of the classics in once package, fantastic! I've gotten a few old-school classics on my Android phone to play, Square Enix has re-released a number of those titles on the phones. It's handy for all of that darn time we all spend in agony in long and frequent bathroom visits...
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 6/29/2017 8:10 PM (GMT 0)
Here's a link for the US version.
www.play-asia.com/nintendo-classic-mini-super-nintendo-entertainment-system/13/70ban1
Doesn't give an exact date for when pre-orders will begin unfortunately, but if you're interested I would keep on checking!
I've got most of the old school classics on my Vita. That accompanied me on many a toilet trip :p Should get it out and dust it off, although I will be getting a new phone very soon and I can put some decent games on that. (My current phone is only good for Mahjong and card games now.)
Plucky
Regular Member
Joined : Jun 2013
Posts : 383
Posted 6/29/2017 8:50 PM (GMT 0)
Hey ladies (and ipoop)!
I saw the IBD Specialist & Nurse Practitioner last week and I am just waiting for my insurance to authorize my Stelara. I have an infusion scheduled for July 12th but that is too far off so my IBD medical assistant is working on moving the infusion up to next week. For now I'm still taking 50mg 6MP + 35mg Prednidone (so down from 40mg) + I took my last Humira shot this past Saturday +Apriso. I quit my cortifoam because I wasn't retaining it and I actually am doing better on less steroids (plus pharmacy wanted $189 for it, meh). Doing better and daring to hope the Stelara works. The perianal fistula is annoying--it smells and if I am very active then I end up with (for lack of a better term) diaper rash, due to the "leakage". I actually use my daughter's diaper cream. But that is really a minor issue in the scope of things.
Best wishes to you ladies, UBT, Clo, and NCOT.
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