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A place to talk Support Group

fuzzy butterfly

Well-known member
I also find that prayer has helped me in troubled times. Also i pray n give thanks for the good times. I pray for others more often than myself, i would feel selfish if i didnt. Although i suffer myself, im more concerned for others sufferings than my own, it breaks my heart to hear what people go through.๐Ÿ’ž๐Ÿ’–๐Ÿ’‹๐Ÿ’‹
 

fuzzy butterfly

Well-known member
โ˜บ thanks Ron . I try my best to be a good n kind person. There a too few of them in this world these days. Thats why i love it here as we are of like mind. ๐Ÿ’•
 
I sympathize with you also. I mean I had the same problems with you But My sister Sugar was 800 she was in a diabetic coma. I was working at a hospital where we couldn't have any errors. My two adopted daughters ran away from the school hadn't been seen all day into the night Which cause me stress Which made me hurt my Self physically My mental state was crazy And what got me through all that at the time That I was losing my job also. I damaged a piece of equipment that was very expensive So what got me through was prayer I pray for strength that I All the time all day long for a wisdom for guidance and I believe that's what it It makes a difference.
Love it.
 
I am sorry. I am typing this from my Kindle. I wish there was one test only that you had to take and that would help the doctor to determine what was going on with yoiu and be able to determine a course of action.
 
I was in the bathroom just a short time ago. I let out some gssd but hadn't gone to the bathroom. My wife, because of the smell, asked me if I was okay.
 
I was just back on Entocort. Without insurance, it would cost over a thousand dollars. With insurance, it is 138 dollars. Is thrre any wayyo drive the cost down?
 
Hey ron i wont be able to help you but i hope you get some answers, this thread shows post of 12/10/2015 and only one for today this is weird i cant see any other previous post of thos month. Had fever again ughhh now i feel scratching in my throat
 
Hope you aren't coming down with something. I just drank an Ensure and shortly afterwards went to the bathroom. I wish my appointment with the specialist was sooner.
 
I also hope not its been like this since last night i havent had the flu last year. Me to ron it feels like an eternity to see him so many things we need to get sorted. Thats not nice to even have ensure and having to go to the bathroom im so sorry ron i hope they can get you sorted and feeling better
 

fuzzy butterfly

Well-known member
Aw my friends.. i hope n pray you get the much needed help n anwsers soon as poss. i worry when we have to wait so long to see gi's n such. All sorts could be going on that could be put right easier n quicker if we could see them sooner. I should have been seeing mine next week. It was canceled till march. I know im doing ok but what if im asymptomatic n stuff is happening that i cant feel ๐Ÿ˜จ. Hope n soon we can all get better n quicker help for our issues. Love support prayers n hugs to you ๐Ÿ™โค๐Ÿ’‹
 
Aw mandy why is that? You need to seem them and have your check up, hope you are feeling well. My intestines are angry today
 

fuzzy butterfly

Well-known member
Hi christi. I dont know why it was changed. They dont tell you just that it has ๐Ÿ˜•. Iv been only on painkillers for joints n omeprzole for stomach acid for nearly 2years now. Which is good in 1way. Oh n questran for bile salts malabsorbtion for 3/4mths.
To me we should be seen n scaned or something to see whats going on inside every 6mths . So that things dont creep up on us without us knowing then causing severe issues. I know that cost to the health system makes it hard to do but come on, in the worse case our lives could be at risk when all said n done ๐Ÿ˜จ
sorry you are having it rough christi,its not fair this is so awkward a disease to deal with. Im ok realy bar the joints n shouldnt be moaning..but im not just moaing on my own behalf, im moaning for us all. Help n support should just be better for us...
love n hugs hope your tummy calms down hun. Thanks for your support christi ๐Ÿ’‹๐Ÿ’ž
 
Yes mandy i agree even 6months are to long for me last time i were at doc they said they will see me again in 3months , in that 3 months i already got a flair? I really cant see why we have to deal with this horrible disease and for life ughhh. Mandy but if your not on any maintenance meds for the crohns they do have to see you coz how else will they know whats going on eish i am so sorry and they should be able to do something for your joints so you can feel better. Mandy your welcome i understand what your going through. Hugs and support :Flower:
 

fuzzy butterfly

Well-known member
Cheers Christi n Ron . I do appreciate you two so much. Well yes every 3mths would be best ideally. But we dont live in an ideal world.. darn shame that. I guess if iv gone this long 7mths since last app 2 more hopefuly wont make much odds. my gp kinda dissmissed the joint pain but going to see what gi says hope to get more help out of him.
Love n best wishes to you my friends. Hope you both improve soonest possible. ๐Ÿ’›๐Ÿ’œ๐Ÿ’‹๐Ÿ’‹
 
I have an appointment with the specialist February 24th. I wish it was tomorrow because I don't always feel the pain but I have the last couple days.
 

fuzzy butterfly

Well-known member
Sorry you are in pain Ron ๐Ÿ˜ฏ always the same with appointments you feel like crap till its time to go then you feel ok. Can you see anyone b4 then ? :hugs:๐Ÿ’•
 
Ron im sorry my friend i hope you feel better soon. Mandy how are you my friend? I hope everyone are doing well. I am struggling with migrain think my bp are high again ughhh intestines are not doing so great and finishing pred tomorrow
 

fuzzy butterfly

Well-known member
Christi im ok thanks hun. Tho i forgot to take my painkillers today duh !! So im stiff as a board now n rather achy . Oh well tomorrow is another day โ˜บ
Sorry you feeling bad with the migraine hun. Rest up. Hugs ๐Ÿ’•
 
Aw mandy im so sorry i hope you feel better soon and dont forget to take your meds. I would set up an alarm for me to remember
 

fuzzy butterfly

Well-known member
Hey Christi sorry you are feeling down hun.:hug: please get onto your docs again, you shouldnt be feeling so poorly without getting some help.
I wish i could come over there n go to your docs with you. Im telling you now they would be sorting you out asap, after id finished with them girl. I take no prisoners these days when it comes to medics โ˜บ. I do so hope you feel better soon, but please get help if you need it darling ๐Ÿ’•:hug:๐Ÿ’‹
 
Hey Christi sorry you are feeling down hun.:hug: please get onto your docs again, you shouldnt be feeling so poorly without getting some help.
I wish i could come over there n go to your docs with you. Im telling you now they would be sorting you out asap, after id finished with them girl. I take no prisoners these days when it comes to medics โ˜บ. I do so hope you feel better soon, but please get help if you need it darling ๐Ÿ’•:hug:๐Ÿ’‹
Amen
 

fuzzy butterfly

Well-known member
You what Ron i get that. I can eat pretty much anything but have no appetite as such n often cant be bothered to eat. I do because i have to have some fuel so i can do a days work. Hugs ๐Ÿ’•
 
I know what you mean, Ron. I started out with all sorts of ideas that diet was going to cure my disease or at least control it, but I'm losing all my illusions now. I've started thinking the same as you, that life would be easier if there was no need to eat, because there's not much pleasure left in it and a lot of fear. I was so fed up of wondering what to eat on Sunday that I ate nothing but cream crackers all day, not the most balanced diet but one of the few things that don't cause obvious trouble. Unfortunately I do still have a very healthy appetite, just not the healthy guts to go with it!
 
I know what you mean, Ron. I started out with all sorts of ideas that diet was going to cure my disease or at least control it, but I'm losing all my illusions now. I've started thinking the same as you, that life would be easier if there was no need to eat, because there's not much pleasure left in it and a lot of fear. I was so fed up of wondering what to eat on Sunday that I ate nothing but cream crackers all day, not the most balanced diet but one of the few things that don't cause obvious trouble. Unfortunately I do still have a very healthy appetite, just not the healthy guts to go with it!
My wife was thinking there has to some diet but I don't know. Hopefully , the specialist will have some idea.
 
A friend took mevout to get new shoes which was nice. Afterwards we had to keep walking around until we found a place that had food I could eat. Because iy takes me a while to go to the bathroom sometimes I didn't feel comfortable going in public.
 

fuzzy butterfly

Well-known member
Oh Ron going in public is a nightmare,especialy if you need to in there a while. Im sometimes bog bound for half an hour ๐Ÿ˜จ. No good when theres a queue ๐Ÿ˜•. The noises somtimes well lets not even go there !!!๐Ÿ˜ฏ
 

fuzzy butterfly

Well-known member
Ah yep i know it well... i often flop on to the sofa in a heap. Just tired to the bone . Im in my bed now as im so tired. Only 8-30 pm. Sorry you feel like that Ron , i know how it is my friend . If i could buy energy id pay a fortune to get some . :hug:๐Ÿ’•
 

fuzzy butterfly

Well-known member
I really hope he can help when you see him . I see mine on the 16th i think of march. I want to see if he can help with this fatigue lark and why i cant gain weight when i can eat ok now and have boost drinks.
My b12 jabs do begger all as well , never feel any different when i have that . Im on iron tablets as well. I still feel like a wet dish cloth most days ๐Ÿ˜•๐Ÿ’•
 
Oh Ron going in public is a nightmare,especialy if you need to in there a while. Im sometimes bog bound for half an hour ๐Ÿ˜จ. No good when theres a queue ๐Ÿ˜•. The noises somtimes well lets not even go there !!!๐Ÿ˜ฏ
Hi, Mandy
Just seen this...
Have you got a Radar key? You can get them from Amazon for about a fiver... if you're registered disabled you can get them without paying VAT. There are cheaper ones but mine broke, so get a sturdy one. The radar toilets at the Arndale centre have always had one or two vacant when I've been there, for example. I can also get into the radar toilets at big train stations... and you don't have to pay.
 

fuzzy butterfly

Well-known member
Hi thanks.ye iv had a radar key for 4yrs . Got it as soon as i was dxd. Nurse told me to get one. I was meaning others queuing while waiting for me lol ๐Ÿ˜†
 
I have trouble sleeping at night , the axciety pill i take at night helps also for sleeping. I took it 16:30 its now 01:47 and im still awake
 
These antibiotics for my pg wounds are kicking my butt they make me go all the time and make me change my bag more often then normal my only break is for about 2 hours every morning but getting about 2 hours of sleep every other day is not ideal.
 
I was up until around 4 because of this disease. My dog wants to go out but I haven't been able to but the disease has slowed me down.
 
My loading dose of Humira ease supposed to be delivered today. All I got was the sharps container. The company is supposed to let me know tomorrow what they are going to do.
 
I will rather do it in my leg than my stomach it could hurt so much, thanks ron im trying to learn as much as i can for when i might switch to biologic
 
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