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Crohn's Disease Forum » Your Story » My story with crohns


07-16-2012, 12:12 AM   #1
tabby-cat
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Location: cornwall, Ontario
My story with crohns

Hi my name is Tabby and I have been diagnosed with crohns for 3 years now. I have been on Pentasa, Endocort, Imuran, Methotrexate, Humira for crohns management and I have also been on Morphine for pain. My crohns started affecting my life shortly after the birth of my daughter, 3 years later I was so ill and unable to even do any normal activities I was in so much pain the hospital was my second home. the doctors gave me morphine for pain which I became addicted to, then I couldn't keep food down in one week I lost 5lbs. called my specialist with no luck after 3 weeks of not being able to keep food down and dropping down to 90lbs, I felt as though no one would help me. My family worried about me all the time. finally one day my mom had to go to the hospital (she has crohns as well) I decided to check myself in to get more morphine, this time was different, the x-ray showed I was completly blocked and the doctor told me I could not leave I needed surgery.

I went outside and called my bf, thats when the doctor told my mom that if i left he was giving me 3 days to live that my body just had nothing left to give. at this point I looked like a skeleton with skin. so I stayed but my surgery would not be as quickly as I planned, I had to have a PICC line to feed me TPN,Lipids,IV,Morphine and Iron for 3 weeks to make me strong enough this killed me because I missed my babygirl and going from seeing her everyday to only an hour every other day was not enough and she was afraid of me for the first while but it got better . after a month in the hospital and getting very depressed my weight dropped to 82lbs (very scary) . so they did surgery Finaly! It went awesome no complications, was home in a week, healed really nice even got a job almost a month later. but now 3 months post op my crohns is came back. Im really scared it is going to be like last time. Ive cried everyday for the past week since i found out . I find myself slipping into old habits, barely eating or drinking, sleeping alot , taking pain meds, and crying alot . I just wanted to be normal so bad but i guess it just is not meant to be the only thing that really sucks is i was just starting to be that fun mom that plays with her kid and takes her to the park. and now i cant because im in too much pain .. just wish she didnt have to go through it too!
07-16-2012, 08:01 AM   #2
Angrybird
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Hello Tabby and welcome to the forum. I am sorry you have had to go through so much and after being given a brief window of feeling well the tums acting up again

After you had the op were you still on any meds for the crohns or have you just had the pain meds? Have you had any type of follow up appt with the surgion/GI doc to see how things are going and if so how long ago was this?

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
07-16-2012, 10:30 AM   #3
David
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Hi Tabby and welcome to the community. Thank you for joining and sharing your story, though it's certainly a heartbreaking one

Questions:

1. What medications are you on currently? Have they tried Remicade?
2. Have they tested your vitamin B12 and vitamin D levels? If so, what were they? While your depression is understandable, I worry that deficiency in these is contributing to it AND making your Crohn's worse.

We're here for you!
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07-16-2012, 01:29 PM   #4
tabby-cat
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Join Date: Jul 2012
Location: cornwall, Ontario
The doc took me off all meds. I had a follow up 6 weeks after surgery and that was back in June.

I am not on any meds but I have an appointment tomorrow so I think they will put me on something. They havent tried Remicade.

I was getting B12 shots for a while about 2 years ago. I know I'm dehydrated and malnourished and iron is low. so i more than likely have deficiencies. As far as my "depression" do you think I should seek help for this or just deal with the emotional baggage that comes with this disease?

Thanks I feel like this could really help me. although i have support from family and friends it feels good knowing I can share my story and possibly help someone who doesnt know what to expect.
07-16-2012, 01:45 PM   #5
ctrl z
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Welcome, Tabby.

Like David said, getting your deficiencies taken care of should help you tremendously. Especially with your depression. It's really important that you get as much nutrition as you can. Your body needs it to get better and heal. Have you ever looked into supplementing your diet with meal replacement drinks? They could really help you since you aren't able to eat much.

I think seeking help for your depression is also a good thing. There are counselors that specialize in helping patients deal with chronic illnesses and could help you learn of better ways to cope.

I hope you get taken care of soon
07-16-2012, 08:16 PM   #6
David
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ctrl z covered pretty much everything I was going to say

When you go to your appointment, have them test you for every vitamin and mineral deficiency they're willing. My preference in order since they probably won't do them all would be: B12, D, iron, folate, magnesium, potassium, zinc, Calcium, K, B6, E, B3, B1.

*hugs*
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