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New and need to vent

G

GypsyGirl

I have had a diagnosis of Colonic Dismotility since 2000. As a result of those problems I have had 2 surgeries. A subtotal colectomy with ileosigmoidostomy. In english this means I had the majority of my colon removed, an illeostomy(a bag). One year later I got hooked back up. In 2005 The sight at which I was connected scarred completely down leading to emergency surgery and loss of more intestines. The scarring down process was gradual over 3 yrs and I was hospitalized many many times for ileus. My guts would stop and I would get the NG tube and lived on ensure and TPN at the end. In 2005 I was hospitalized at Harborview Trauma Ctr in Wa. state. I nearly died! God willing I did survive! and after a year or so I started to thrive. Im a dog trainer and I was able to do that, I was happy. This last summer, around June 2011 I started to have abdominal pain and by Sept. I was having terrible cramping and was feeling awful. My Dr. had me schedule a scope to look and to all of our surprise there were several areas of terrible ulcerations. He ordered at CT and the result was not good. They suspected I had Crohns disease. The diagnosis was final after pathology an bloodwork. This last week I was hospitalized for severe tummy pain and vomiting. Ive been in entocort, prednisone and now imuran. Im waiting for the paperwork to go thru for the biological agent. I am so....Overwhelmed!!! I hope to find strength in this forum because I need it. I also get the horrible joint pains. I just dont know how I can get thru this, I am so overwhelmed!!!! Thanks for letting me vent. Patty
 
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Grumbletum

Grumbletum

Hello Patty. So glad you have found us and please vent away. We are here to listen :) It's very sad to hear of your long struggle but it's good they will try you with a biologic. Have they said if it's Remicade or Humira? Whichever it is, I sure hope it gets things under control for you x
 
crazycanuck

crazycanuck

Location
Langley, B.C.
Hi there welcome to the forums here. God I'm sorry for going through all that but I'm sure if you can make it through everything you have for over a decade then Crohn's will be under control in no time.

I've never taken the drug your talking about and I'm not entirely sure about the spelling myself but do check out the treatment forum for more information on it. Be sure to ask a ton of questions although I'm sure you already know that. Make sure you are comfortable with your treatment plan and best of luck with everything!
 
giftedbyadoption

giftedbyadoption

You vent away your life sounds like mine :( your story is one reason why I am going to try and get my dr to just go with the stoma from the get go. I dont want any of the colon left I know it will just end up not working IF they could get any of it working to reconnect it to the small intestines as it is??? Doubtful with most of it dead from no motility for years. I have been sick since age 2 and I am 42 and the past year has been hell but I started losing weight real bad the past 8 months 30 pounds because I finally just stopped eating the pain is to bad when you go 30 days and cant go to the bathroom. I am now 100pds and 5/8 very malnutrition and been in the hospital a few times for that and no potassium and ect....

Its been difficult to get drs to agree on surgery they say you are young and tiny and we usually do this surgery on over weight old people WTF..... stupidiset thing I ever heard. If you need it who cares what the hell size and age you are.
I am fighting to get this done and get some of my life back my husband and 2 sons suffer as well god bless them :)

You said your joints hurt and ect... have you seen a rheumatologist a lot of people with these GI issues have lupus or RA and some have both :(
I just joined the other day and people have been great here you should like it :)





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GypsyGirl said:
I have had a diagnosis of Colonic Dismotility since 2000. As a result of those problems I have had 2 surgeries. A subtotal colectomy with ileosigmoidostomy. In english this means I had the majority of my colon removed, an illeostomy(a bag). One year later I got hooked back up. In 2005 The sight at which I was connected scarred completely down leading to emergency surgery and loss of more intestines. The scarring down process was gradual over 3 yrs and I was hospitalized many many times for ileus. My guts would stop and I would get the NG tube and lived on ensure and TPN at the end. In 2005 I was hospitalized at Harborview Trauma Ctr in Wa. state. I nearly died! God willing I did survive! and after a year or so I started to thrive. Im a dog trainer and I was able to do that, I was happy. This last summer, around June 2011 I started to have abdominal pain and by Sept. I was having terrible cramping and was feeling awful. My Dr. had me schedule a scope to look and to all of our surprise there were several areas of terrible ulcerations. He ordered at CT and the result was not good. They suspected I had Crohns disease. The diagnosis was final after pathology an bloodwork. This last week I was hospitalized for severe tummy pain and vomiting. Ive been in entocort, prednisone and now imuran. Im waiting for the paperwork to go thru for the biological agent. I am so....Overwhelmed!!! I hope to find strength in this forum because I need it. I also get the horrible joint pains. I just dont know how I can get thru this, I am so overwhelmed!!!! Thanks for letting me vent. Patty
Click to expand...
 
G

GypsyGirl

One thing that I have learned is that we need to FIGHT for what we believe is best for our bodies! I begged the surgeon (literally got on my hands and kness) to get my illeostomy reversed. And after that surgery I did very well! It wasn't until I got Crohns that my life took another dive. Im feeling a bit better today. I have decided to take my imuran at night. I think it has been causing me to be nauseous and I dont want today to be ruined because of the nausea. Does anyone else have that problem with imuran?
 
giftedbyadoption

giftedbyadoption

GypsyGirl said:
One thing that I have learned is that we need to FIGHT for what we believe is best for our bodies! I begged the surgeon (literally got on my hands and kness) to get my illeostomy reversed. And after that surgery I did very well! It wasn't until I got Crohns that my life took another dive. Im feeling a bit better today. I have decided to take my imuran at night. I think it has been causing me to be nauseous and I dont want today to be ruined because of the nausea. Does anyone else have that problem with imuran?
Click to expand...
I hope your feeling better today :)
My illeostomy wont be reversed if I get a stoma pouch it wont be reversible I will have no colon left at all. With my granny, both aunts and my sister having colon cancer I want nothing left in there if they have to take 98% of it anyway :(
 
Grumbletum

Grumbletum

I had nausea with the Imuran and bad headaches, but now I take half the dose in the morning and half at night and it's fine now.
 
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