Crohn's Disease Forum » Your Story » Crohns suck! Literally it sucks your nutrients, sucks your health.. it just sucks


02-21-2018, 07:12 PM   #1
AnnMiddleton218
 
Join Date: Feb 2018
Location: Brooklyn, New York
Crohns suck! Literally it sucks your nutrients, sucks your health.. it just sucks

Hey my fellow crohnies!
Im new to this site but ive been reading from this thread for a long time! Everyone is just so supportive and we all can relate.. Heres my story im 28 and a mother of a 5 and 1 year old. I had my disease for 12 years. In 2010 I recieved bowel resection surgery after numerous of medication and remicade fails! Since the surgery I was in remission for 10 years...(crohns who? Not me this sugery had me acting up.. Never saw a GI again, no stomach pains, and no nasty loud fistulas) I was then got pregnant with my 1 year old.. even gained weight til i was over 200 pounds (that may sound like alot but im 5'9 and never been over 180 pregnant or not) still no sight of crohns. I gave birth june 2016.. dum dum duummmmmm... my crohns resurfaced like did you miss me? No crohns I didnt miss you! How did I even end up with you? I feel like im in a relationship and my parter is not getting the hint that I no longer want this relationship.. my once slim thickness is now slim boney. I weigh 118 now. My once confident self always walks with her head down now. I have a draining fistula that dont stop draining! And an abscess in my psoas muscle that just dont stop draining either (I should add that I have a penrose drain in my fistula as well as my abscess in my back) had it since nov 2017. Ive been so close to death so many times with this disease. And you dont realize that the disease may not cant kill you but the affects the disease can and its scary. After losing over 100 pounds fast and not being able to work because of hospital admissions I found my self applying for SSDI. After 3 months I got found eligible so one less thing to worry about. The next option is a stoma bag or something of the sort.. but i dont want it. Im eligible for medical marijuana and im going to persue it. Desperate times call for desperate measures. I need my weight back! Not all of it just give me some So I dont have to look like a skeleton walking and maybe a few pounds back in the bottom area but hey! I want to try to whey protien as well as collgen powder, hemp oil with the medical marijuana. Everytime I go to the doctor they give me cipro and methronidazole.. no matter who! Same crap that doesnt work and gives me bad side affects so I think its time I try to see if I can help myself the natural way.. well .. you know what I mean!

Sorry for the long post, I can go on and on about this disease
02-21-2018, 08:24 PM   #2
ronroush7
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Hi. I am sorry for all that you have been through. I hope the doctor can get you in remission soon.
02-21-2018, 08:34 PM   #3
cmack
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Welcome AnnMiddleton218,

I can relate to at least some of your frustrations, I'm sorry to hear you are feeling poorly. Is there another doctor you can see? There are some treatments for fistulas that work. You have come to a good place for support.


Best wishes,

cmack
02-22-2018, 04:50 PM   #4
TK83
 
Join Date: Nov 2016
Location: London, United Kingdom
I have a psoas abscess that comes and goes (for the last 7+ years). But by the time I'm showing symptoms it's too large to operate and when they do scans etc it's too small. Feels like there's no winning with this one
02-22-2018, 08:10 PM   #5
cmack
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I hope the abscess improves and goes away. Have you been put on antibiotics? Has the doctor mentioned what they think caused the abscess?
02-22-2018, 09:29 PM   #6
TK83
 
Join Date: Nov 2016
Location: London, United Kingdom
I hope the abscess improves and goes away. Have you been put on antibiotics? Has the doctor mentioned what they think caused the abscess?
Too many antibiotics courses to mention. They think it's caused by inflammation around the terminal ileum. It tends not to come to the surface of skin but it did last time and exploded spectacularly. My consultant seems to have taken a more aggressive approach and I have a surgical consultation in May. They are quietly confident it is not a fistula following an mri so I guess I have that to be thankful for. Thankyou for your well wishes, it is appreciated
02-22-2018, 09:45 PM   #7
cmack
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You are welcome TK, keep in touch. I have had surgery several times, so feel free to ask me questions.
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