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Crohn's Disease Forum » Your Story » At 70 It Finally Caught Up With Me


10-22-2017, 05:38 PM   #1
susiedeanysmom
 
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At 70 It Finally Caught Up With Me

I was diagnosed with Crohn's about 30 years ago. I was put on good ole prednisone off and on for about a year. Then it was just an occasional flare-up - treated with more prednisone. ( I always loved looking like a half-back every time I took it.) Finally, in 2001, I was hospitalized with a blockage. The doctors waited and waited and I was in the hospital for almost a month. Finally, they did a resection. Since then I've had a few minor flare-ups up. That was until last Dec. I wasn't in pain but my hemoglobin kept falling. It went from 12.0 to 8.8 over the next few months. I have had 2 colonoscopies, 1 endoscope, 1 enterograph and bloodwork - I'm still doing it ever week. The doctor put me on merocaptopurine. He was going to put me on Humira but I couldn't get any copay relief (applied 3 times) and I can't afford $2400 a month. From what I've read and heard Humira is painful. Are all the biologics painful? I finally found out what it's really like to be a crohnie. I don't know anyone else that has it and as I'm sure you've all experienced, nobody gets it! It's as if you're not REALLY sick because you don't look like your sick and last week you didn't act sick. I'm glad to have found the group.
10-22-2017, 05:48 PM   #2
ronroush7
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I have been on Cimzia, Remicade, Stelara, Humira and now Entyvio . The Humira is painful for a few minutes. Other than that, i have not had any pain.
10-23-2017, 06:27 AM   #3
valleysangel92
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Hello, welcome to the forum!

I'm not sure about the US, but in the UK we have a new humira formula that doesn't sting the way the old one does, they've removed the citric acid so it doesn't burn anymore. I haven't personally had it but I know a few people who are on it and they say its a lot less painful. They also say that removing the pen/syringe from the fridge about half an hour before injecting helps to relieve the sting, and some advise icing the injection site to numb it too.

If the humira doesn't work, you may be offered infliximab or vedolizumab which are both given as an infusion, other than the initial IV, neither of these are painful.

As for other people not understanding, I completely get what you're saying, as a 24 year old no one believes I'm "that sick" and even my own sister constantly questions why I'm not in work and almost makes it a competition, comparing her issues to mine. We live in a world that's unfortunately dominated by appearance and if you don't "look sick" then people don't take you seriously. I don't really know how you're supposed to look, but apparently its not a fairly well dressed 24 year old. Although we're all from different walks of life and are at different stages of personal life, everyone here is in the same boat, we all understand the unique pressures of dealing with an invisible chronic illness, we know how hard it is being constantly judged on how you look and act, and the feeling of having to justify and prove how sick you really are. It's a difficult position to be in, but you don't have to go through it alone, we're all here for you.

If you have any questions or worries, please always know you can come and ask us, we won't always know the answers but we will understand where you're coming from and will at least try to point you in the right the direction. You can even just come and offload and have a rant if things are getting on top of you or come and celebrate when things are going well. There is no judgement here and there is no such thing as a silly question.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, 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
10-23-2017, 09:30 AM   #4
scottsma
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Hello and welcome to the forum.we have a " diagnosed over 50" thread you might like to browse.As has already been said,please come and have a vent when you feel like it.We're a friendly forum and will try to help you.Ask questions and let us know how you're doing any time.There's always someone around.
10-24-2017, 01:08 PM   #5
Bufford
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Welcome to the club, you will find people of all ages here, they are a friendly bunch. One thing I notice is that Crohn's seems to slow down for those of us who are older. I recall flaring badly through my 30's and 40's before slowing down in the 50's. I am hoping that I slayed the dragon and maintain a varying degree of remission, but when I see someone over 70 with a bad flare its a bit disconcerting. I hope will go into remission for you, I am afraid of the heavy treatments as I age.
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