Crohn's Disease Forum » Support Forum » Vent Away » Just having a frustrating day

04-13-2012, 10:12 AM   #1
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chrisnsteph1022's Avatar
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Location: Tennessee

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Just having a frustrating day

I just need to get it out. I'm so sick of this damn disease. I was in tears last night with foot and leg cramps. Hobbling around because of arthritis in my hip. Doubled over because of abdominal pain. Today isn't any better. I'm on as many meds as possible (Lialda, Imuran, Entocort and Remicade). I'm not as sick as I was before Remicade. But dammit, I want to see remission!

It's been 17 long months since this flare started. Before that, I had 6 years of complete remission. I'm beginning to think I'll never get back to that. I want to just throw all the pills away and say screw it. I don't think they're doing a damn thing. The Remicade is the only thing that improved my symptoms somewhat. I'm not going to the bathroom 15 times/day (only 5 now), no bleeding and no nausea. I'm grateful for that. Really, I am. But I really just want the pain to go away.
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
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04-13-2012, 10:17 AM   #2
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Mary:)'s Avatar
Join Date: Mar 2012
Location: Chicago, Illinois

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I'm sorry you are in so much pain...I also had the pain in my legs when I flared. Can you try some other biologic? Hugs to you
DX Crohns-2009


Humira-Every 2 weeks 40mg

Prednisone drives me nuts!!!!
04-13-2012, 12:45 PM   #3
Join Date: Feb 2011

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Venting is good... better than keeping it all in! Just tell yourself that you were in remission before and you'll get there again. Try and think of all of the good things going in your life. This is at least what I'm doing myself. I am also having a BAD day... my damn horseshoe fistula started draining a lot over the past day and went to see my CR surgeon who told me an area closed up and an abscess formed to she drained it in her office. Ughh... I feel like this is never ending!!! I just want to be pain-free, too. I am also on remicade and imuran, now getting remicade every 4 weeks at 10 ml.

I have 2 little ones (ages 2 and 4) and last night my older daughter was in bed stroking my head telling me how much she loves me and that I'm the best mommy. Even though I felt like a#$ I told myself that even in that state she needs me and I need to try and be as positive as possible. I don't think anyone who hasn't experienced this can really understand what it's like and how bad chronic pain can be. I just keep trying to stay hopeful that some new treatments will be developed and that on days when I'm in pain I tell myself that I will feel better. I really hope you feel better soon. And when you don't feel well vent away! It helps me too.
04-13-2012, 03:50 PM   #4
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Grumbletum's Avatar
Join Date: Dec 2010
Location: Western Isles, United Kingdom

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Hang in there. Sometimes the battle gets so tedious and frustrating, I know. How many infusions have you had now? And how are they assessing your progress?
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
04-13-2012, 04:40 PM   #5
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SarahAnne's Avatar
Join Date: May 2011
Location: Panama City, Florida

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Stephanie, I'll be the first to admit that it is slow going and not always what you expect that it will be. I've been told recently that my Crohn's is in remission and that is great, but I still have other stuff going on. Gastritis is causing pain, so even though I don't have flaring CD I'm still having abdo pain, and leg cramps too.

I got really down and depressed the beginning of the week, I was just so frustrated to be so close but not all better. I began to realize I'm so much better than I was before, last summer I could only lie around and try not to eat so I didn't feel I was going to die. This spring I have gone to the beach and canoeing with my husband and kids several times already, I couldn't have even entertained the thought last year.

It really sucks and I totally understand. Try to focus on the successes. Hopefully one day it will all just click into place and it will start to turn around. Stay positive!
Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
04-14-2012, 06:01 PM   #6
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chrisnsteph1022's Avatar
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Location: Tennessee

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I had my 3rd loading dose 6 weeks ago. It should be working by now. We added entocort a month ago, but it did nothing. I didn't even get out of bed until 3pm today (except to use the restroom, of course). I'm so worn out. I don't see my GI again for 2-3 months.
04-15-2012, 07:01 AM   #7
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Join Date: Sep 2011
Location: South Northants, United Kingdom

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My days are like that. its nice this website exists cos i don't get out much, and no one bothers turning up at my door. Not that i got the energy for conversation. i'm sorry to say, and embarrassed to admit, except to all of you people, that i only exist in the most minimal way in this life. I just can't believe i've had crohns for so many years without respite. There is no point in my life. how defeatist is that? omg, must shut myself up. I have four cats and thats a good reason to exists right? Trying to stay positive is difficult. and yes today is one of my tearful days.

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