Crohn's Disease Forum » Support Forum » Mental Health Support » Feel like I'm not gonna make it:-(

01-21-2012, 07:13 PM   #1
Crohnaroideramasis's Avatar
Join Date: Aug 2011
Location: Las cruces, New Mexico
Feel like I'm not gonna make it:-(

My life is going by and I'm just laying here day after day, month after month. In and out of the hospital, I'm only able to stay home since my doc has given me meds to deal with the pain and constant, severe nausea. I had my first Remicade treatment and felt great but only for a few days. Then right back to agony. I have my second Remicade in 2 days and hope to god it works for a bit longer. I've gotten all sorts of advice and I even had someone on this forum question my diagnosis of Crohn's and Rheumatoud arthritis because I am basically unable to eat anything that isn't soft and white. Can't eat veggies, or fruit or meat or much of anything unless I want to be back in the hospital. Anything I eat just wants to come right back up for the past 8 months. I'm frustrated and seriously wonder if this is going to kill me. How much longer can I go on like this and continue to live? Anyone else feel like they are going to die an untimely death from crohn's/ colitis? I just want to be able to do things like clean the kitchen, cook, drive, go out for dinner, go to a movie, take the dogs for a walk, go on a hike, go to the grocery store. All the things well people take for granted, just as I did before I became ill. I would not wish this illness on my worst enemy:-(
01-21-2012, 10:08 PM   #2
My dog has hands!
ekay03's Avatar
Join Date: Feb 2011
Location: Balch Springs, Texas
Crohnaroideramasis, hello and welcome. I know how you feel. It is very painful and sometime it feel like you are gonna die, but that is very rare. I havent looked at your other posts so I dont know much about you. If you are under a doctors care, you are gonna make it. I know it feels really bad. Do you have any pain medication? It is a crappy disease we have, isnt it? Hang in there sweetie, you are no alone
Crohns dx 1992
Bowel resection in 2000 and remission since then.
150mg Azathioprine maintenance dose
Ferrous Sulfate
Folic acid
Bentyl as needed
Lyrica x2 daily for pain
Norco as needed for pain
Ondansetron as needed for nausea
Miacalcin for the bones
That's a lot of stuff, but I feel good

Friend me:
01-21-2012, 11:38 PM   #3
New Member
Join Date: Jan 2012
Location: Youngstown, Ohio

My Support Groups:
Boy have I been and most times still am where you are. I have the vomiting issue as well my doc has me on every antiemetic I know of my legs and hips are literally numb from injecting phenergan since I can't keep the pills down and suppositories well you get it. If I don't get it controlled then off to er usually by ambulance because I dehydrate so quickly. I have no veins left so on Wednesday I am getting a port put in so I can start the remicade the following week and so the next time I get dehydrated and my bp tanks they don't have to do an emergency central line.
My point is I know how you feel I don't get out of bed much anymore because I just don't have the energy. I have a bedside commode in my bedroom because it is to many steps to the bathroom. I too just want to be able to clean the house or go grocery shopping and be a better wife for my husband. It sucks and people without direct knowledge don't get it but I do. I get it so just hang in there email me if you want to talk more Lord knows I could use a friend too. Remember remicade is not an instant fix it takes time to build up and suppress your immune system
My email is [email protected] hope your feeling better soon
01-22-2012, 02:54 AM   #4
Senior Member
Grumbletum's Avatar
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
Hello to you both and very glad you found us. Like ekay says, there are many of us who can empathise on here. I'm sorry if you've had any comments here which have been hurtful. Sometimes people have very strong feelings about diet, for example, and though well-meaning, can be a bit too adamant.
I wish you both every success with the Remicade and hope you'll keep us posted. After three infusions, I am feeling 'normal' for the first time in over a year.
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
01-22-2012, 04:13 AM   #5
Senior Member
Rebecca85's Avatar
Join Date: Apr 2010
Location: Nottingham, UK
I don't think anyone was questioning your Crohn's diagnosis. They were just concerned that you might have something else going on besides active inflammation. For example you could have extreme narrowing from scar tissue, which drugs can not help with. Have you had anything like a CT or MRI scan recently to check for narrowing?
Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
01-22-2012, 04:30 AM   #6
Super Moderator
DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Hey hun...

My daughter went through a similar experience to you and we did come within a whiskers breadth of losing her, she was undiagnosed at the time. I hope the Remicade does bring you lasting relief but I am concerned at your symptoms. Since your disease is in the ileum I would be concerned about either of the following...narrowing, perforation, fistula and/or abscess. Have any or all of these complications been recently ruled out?

Dusty. xxx
Mum of 2 kids with Crohn's.

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