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Crohn's Disease Forum » Support Forum » I can't cope anymore


03-23-2017, 11:11 AM   #1
NancyHany
 
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I can't cope anymore

Hello there, it's been a while since the last time I was here but I'm hoping I get answers from people in similar situations. I have crohn's disease, I've been diagnosed 6 years ago. I'm currently having the flare up from hell for a week now, the flare up before that started from 3/1 till the end of January. Between of those two flare ups I started to have pain at my right hip joint and they found a bone lesion on CT and MRI both radiologists believe it's benign behaving but it needs to be removed as the two orthopedic surgeons I went to advised as steroid use made my bones weak and I can fracture at anytime. My GIT refuses to prescribe me anything other than paracetamol for the pain because it goes against his ethics and even if he did according to the Egyptian laws I have to take the prescription to an oncologist to give me the prescription that's accepted in state run pharmacies the only ones who stock those painkillers legally in Egypt. They give me the strong painkillers whenever I go to the ER, but I can't stand hospital stays anymore.

I'm on methotrexate, used to be on Remicade but I couldn't afford it anymore, biologic autoimmune drugs are not covered by insurance here.
My GIT want me to have enteroscopy as he believes my small intestines are in a worse shape than they appear on CT. It is only preformed by two doctors in my city and one of them failed to access my colon before because I have a very bad narrowing that only my current GIT was able to get through (He comments every year how it's getting harder and last time he told me when I woke up that he almost gave up, he entered on the last attempt) so that will explain why I'm reluctant to find another GIT. He doesn't want to remove it now also because he believe it's better to delay surgery for now.

I'm sorry I typed for so long, but I feel defeated and battered. I need someone who understand how I feel. I can't do anything anymore but lay down and hope the next cramp wave would be the last. I feel I'm losing everything I worked hard for in my life. I can't cope anymore, my mind cannot tolerate pain anymore. I'm scared.
03-23-2017, 12:23 PM   #2
scottsma
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I'm so sorry for all the pain and stress you are having to tolerate.I hope someone from your country, who understands it's ethics, will see your post,and have some advice for you.
Sending support is all I can do for you unfortunately.But I hope you get the help you so badly need,soon.
03-23-2017, 01:25 PM   #3
ronroush7
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I agree with the above post. Much support sent.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
03-23-2017, 09:48 PM   #4
Justanothercp
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Can you get a second opinion or have another conversation with surgeon? If your quality of life is so disrupted and unable to function maybe they will reconsider. Better to do a surgery under controlled circumstances than have a bowel rupture.
03-23-2017, 10:43 PM   #5
cmack
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Can you travel out of country for medical help? I wish you the best. I have been in pain before, nobody feels it like you do.
03-24-2017, 07:50 PM   #6
NancyHany
 
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Thank you all for the supportive words, i really appreciate it. It's hard to act strong all the time with this disease.
Cmack: actually I've been considering this option for a while, but saving money with medical bills and taking time off work with every flare up isn't easy. Most of family are not Egyptians,my husband included and they will help but i don't want to ever be a burden, i want to be able to support myself financially that's why it won't be a quick step for me.
Justanothercp: I honestly think so too, problem is good doctors are not easy to find around here, I'll talk to him again next appointment about surgery but I'm sure he will insist to have the enteroscopy first before he considers even as he firmly believes that my small bowel is worse than my colon.
03-24-2017, 07:54 PM   #7
cmack
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Something needs to be done, that is for sure. I'm here if you need to vent, sometimes that can help a little with stress.
03-26-2017, 06:37 PM   #8
cmack
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Hi Nancy,

I was thinking of you. I thought I would check in and see how you are doing.
03-27-2017, 01:40 AM   #9
tots
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I am sorry your having so much trouble!

I hope something turns around for you very soon.

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
04-12-2017, 05:03 PM   #10
cmack
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Hi Nancy,

How are you doing? I have been thinking of you.
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