Feeling like i cant go on...

[ruthyp]

Hi All,

im really not feeling good :'(

I've now cut down to 5mg prednisolone, im feeling absolutly awful, every part of me hurts and aches. I cant sleep and im so restless, but finding it hard to exercise because of my tiredness.

My crohn's is really getting the better of me, i've totally had enough. Im thinking of asking for a ileostomy. Right now, im thinking that anything is better then this pain. If anyone could give me some advice, or people that have had one, please let me know what its like.

I really miss eating whatever i want, my diet is so boring and i miss everything i used to be able to do.

please help.xx

 

[nomad]

Dear ruthyp, I can't offer much besides my solidarity. Rest assured there are more of us, going through the same feelings, feeling the same pain...

One thing I have been learning is to be gentle on myself, learning to say "so what?" if I can't function or if I just need to rest for a whole day... you know, switch off temporarily.

And I hope this doesn't come across as weird or sloppy, but crying also helps. Let it flow, it does bring relief.

Big hug and best of luck!

 

[tricia]

hi...
I know how you feel as the past week for me has been awful. Im very sick at the moment and the remi just isnt workin. I have a huge interest in ralllying and have a huge event which my partner is a part of coming up in a few weeks and i dunno if i can make it now. I find that just resting and support from all my family and goood friends really helps. Just dont let it get u down to much or it will completely take over your life. Try keep a happy face on and talk to who ever will listen, and i hope that things will improve for u soon..

all the best
tricia

currenty on Remicade every 4 weeks
zofran 8mg twice daily
mezavant 1200mg twice daily
iron injections once weekly

 

[Astra]

Hi Ruth

sorry you're feeling so bloody awful!
But you need to give your doc a ring, you shouldn't be suffering like this!
I know you prob don't want to do this, but maybe upping the Pred for a while longer?
I see you're on a good combo of meds tho, maybe these need fine tuning?
Make an appt with gastro, get some relief, write everything down, and persist with them that you're not feeling great at the mo.
good luck Ruth
xxx

 

[Jennifer]

Going on a higher dose of Pred as suggested might be helpful or perhaps a different medication that's stronger. I don't really know your history or where you're being affected (or if you have CD or UC). Having a ileostomy is a last resort thing and I should hope you're thinking of getting a temporary one and not a permanent one (it really depends on your situation on whether or not forced gut rest will help at all). I'm curious if you do plan on it being permanent why you would chose that over a bowel resection (again this all depends on how much of the bowel if being affected). My CD is located mainly in the ileum and medications were not working even on the highest doses of Pred, 6MP, Asacol and another steroid for my body weight. Once that large combination of medication was used and still weren't working, they decided to do a resection to remove the parts of my bowel that were being affected (almost a foot of my ileum was removed). For me I'd prefer to have a resection before I went for a stoma but again, it all depends on how much of the bowel is being affected and if you've exhausted ALL of your medication options.

Edit: You're also on a pretty low dose of 6MP. Maybe increasing that dose along with the Pred. may help a lot.

 

[ruthyp]

crabbyrelish- im thinking of a temp one, it was suggested to me about a month ago and i was fully against it, i have CD. But then i did some reading and spoke to a few people that have had temps and they all said they felt fab when they had it. I think im just at the desperate point now, where im willing to do anything that will stop the pain.

i went to my gp and turns out im now addicted to the pred and my heart and lungs were under alot of strain, so im now on it again, taking it alternate days to try to ease my body off of it. so maybe the addiction was causing all this pain rather then the CD itself. Im just at my wits end!

thanks to everyone for your support, this forum has lifted me so much!
xx

 

[social me]

not alone

Hi, I am new to this site and many days feel much like you do. For me its fatige, not hungry, vomiting :stinks: and sleep is all over the place the amount of sleeping meds and anxiety meds I need to take to sleep is amazing , it would knock the average person to their knees. Had sleeping problems for 10 yrs and that alone is frustrating. Many nights I stare at my husband sleeping like a baby and I at 3 am sit and stare at a tv in a dark room, thinking I would give anything just to close my eyes and get good rest. Have you had a sleep study? I did it helped me, well maybe not but at least it educated me as to why I am so tired. I too miss my "old" life. This new one sucks but could be worse. Why just right now my husband and 2 kids are leaving for the gym and Id die to go with them and have fun but instead I am using this quiet time to sleep (my daily morning nap). I feel hopless to but tell my self this shall pass and I know there will be a day soon I hope, where I will feel good at what would be a normal day for most is like a gift from God and I run with it. I LOVE LOVE LOVE a day w energy, little pain, and hope. I am sending prayers your way. Always here if ya need to talk.:hug:

 

[nomad]

Good to hear from you, ruthyp, and glad to hear the forum is helping.

My solidarity goes out to you too, social_me...

Hugs to all

 

[ruthyp]

thank you

Hi, I am new to this site and many days feel much like you do. For me its fatige, not hungry, vomiting :stinks: and sleep is all over the place the amount of sleeping meds and anxiety meds I need to take to sleep is amazing , it would knock the average person to their knees. Had sleeping problems for 10 yrs and that alone is frustrating. Many nights I stare at my husband sleeping like a baby and I at 3 am sit and stare at a tv in a dark room, thinking I would give anything just to close my eyes and get good rest. Have you had a sleep study? I did it helped me, well maybe not but at least it educated me as to why I am so tired. I too miss my "old" life. This new one sucks but could be worse. Why just right now my husband and 2 kids are leaving for the gym and Id die to go with them and have fun but instead I am using this quiet time to sleep (my daily morning nap). I feel hopless to but tell my self this shall pass and I know there will be a day soon I hope, where I will feel good at what would be a normal day for most is like a gift from God and I run with it. I LOVE LOVE LOVE a day w energy, little pain, and hope. I am sending prayers your way. Always here if ya need to talk.:hug:

thank you for keeping me in your prayers, i will defo be mentioning you tonight in mine! it is very hard as i havent got children yet, and i am so desperate to have them. My partner had an affair and left me, mainly because i was so ill and he got sick of it. It makes me feel like all men will feel that way towards me, so i get very sad that maybe i wont get the family i want so badly.

The support on here is incredible! its has defo helped me.

thanks to everyone!!! xxx

 

[bruscar]

Hey Ruthyp,

So sorry you feelin crap. I have been there and done that and nothing i say will make you feel better, so i'll type it instead.haha

Seriously,the pred does do good and also has its disadvantages too. but ya gotta roll with it until you can get off it for good.just keep talkin to your docs that what they are there for and you are their customer!!

I had a temp ileostomy and absolutely hated it until i had it reversed, then i couldn't wait to get it back and within about 6 months i had to get a permanent one.

To be honest i just couldn't have gone on another day the way i was.

Massive decision, think hard about it.

Best of luck to you

Bruscar

 

[social me]

Ruth, You need a strong person in your life to be patient and supportive. If your partner can do that to you and then take off, let em. God will send you the right person for you and when its time you can have that family of yours. Believe!! It took my husband and I 2 miscarriages and almost 2 yrs but we had a baby boy. He was sick for a while and I was too. But hes healthy now. It will all work out in the end. God has BIG plans for you! Stay strong and I am always here 2 help. I have my bad days more then good days, and its hard , frustrating and lonely, but there is always a good day around the corner. Please God let today be a good day for Ruth.