05-18-2014, 12:41 PM   #1
joandrew
 
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Location: salisbury, United Kingdom
So unhappy

i am 45 and got crohns 18yrs ago, I had 12" of large colon taken away and 7" of small colon taken out..i had been in remission for all this time even though I got lactose intolerant and Raynaud's I seemed to cope but just over the last few weeks I have become very weak, soiling myself and tired and very down, I am now on sick from work and due to face atos for a medical...how on earth can they determined weather I am fit for work they don't live my life.
I am now considering a stoma.
my joints and my hips ache when I walk.
I am so unhappy as this crohns has reared its head again
05-18-2014, 12:45 PM   #2
nogutsnoglory
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I'm sorry! Are you on any meds currently? Maybe you need something different if you are. You should exhaust all options before undergoing ostomy surgery.
05-18-2014, 01:01 PM   #3
valleysangel92
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I'm so sorry you're having such a tough time *hugs* .

Are you currently taking any medications? If not, are you considering any?

Surgery is a big step and not something to be taken lightly, if you have been in remission until a few weeks ago then you could go back into it with appropriate medications.

As for the medical, the best thing to do is be honest. Let them see what this disease is doing to you, be honest about all your symptoms including your urgency and let them know that you are actually considering major surgery because of how bad things are. If you have any notes or reports from your medical team then take them with you, it will help your case.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-18-2014, 01:08 PM   #4
joandrew
 
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I am at the moment on steroids and awaiting to see consultant on the 4th june.
I have gone 18years with no medication so I think I am a lucky sole really.
I am guessing my age is against me now.
05-18-2014, 01:10 PM   #5
nogutsnoglory
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Steroids are a maintenance drug but your doctor's should consider an immunosuppressant like 6mp or a biologic like Humira to see if those can help the crohns symptoms and joint pains.
05-18-2014, 01:32 PM   #6
Daisy123
Senior Member
I am also considering a stoma, but and this is a big but, I never stay in remission for very long. I have strictures. If it was inflammation then I would be trying meds first. A stoma is not a cure for us with Crohn's so it is important to try other meds before making a life altering decision. You had a very long period of remission which seems to me you should try the new meds instead of taking a drastic step.
05-18-2014, 01:39 PM   #7
joandrew
 
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I guess its due to being tired and in pain that I think take the god dam thing away,
being underweight and tired doesn't help.
I do need to slap myself in the face with a reality kipper and get a grip.
I will feel a lot better once I have seen consultant and got on the correct meds.
05-18-2014, 01:51 PM   #8
Daisy123
Senior Member
I feel exactly the same, but I am now on strong pain meds, oramorph and Tramadol it is much more bearable, but took me three months to get pain meds sorted out. I am also on the low residue diet which has helped.
05-18-2014, 05:28 PM   #9
RowdyRowdy
 
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Wow, Joanne. We live in parallel universes. I have a surgery scheduled on the 27th for a colostomy. I've been fighting this tooth and nail for 15 years. Now the day has come. Work told me to take three months off. I couldn't hide my appearance- so gaunt and pale. So now I feel as if I don't get this procedure done, my actual career would be affected. I really didn't know how weak and ill I was until I got back onto the Prednisone Crazy Train again. It was like I was the Walking Dead. So my body is stronger but my mind is outta control. What a horrible, strange, misunderstood trauma Crohn's can be.
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05-18-2014, 06:26 PM   #10
DJW
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Hi joandrew. I'm sorry to hear you're in this place. I don't have anything to add. Just want to send you my support and best wishes. I hope this flare is brought under control quickly.
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Ileostomy at 19

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05-20-2014, 09:19 AM   #11
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Hey JoAndrew! Try taking some fish oil pills for the body aches. I've been trying the fish oil pills for weeks now and feel much better!!
05-24-2014, 09:27 AM   #12
Mikel
 
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I'm sorry to hear that. I know how u feel I have had it for 14 years and I'm 27 but feel 100 I too got denied by disability and I was let go from my job after 6 years due to my illness. have u considered Remicade it helped me a lot at first especially with my joints I have broke about every bone so they hurt a lot but after Remicade I feel good for about five weeks. Hope u feel better and try to keep your head up
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