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leighhi27

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Hi,

I am new here and not exactly sure what to say. I was diagnosed with Crohn's about 7 or 8 years ago. After being in and out of hospitals in Europe I came home for a visit and my my mom made me stay until I was better. Finally a US doctor told me what my problem was. I went back to Europe and things were better for a while. I moved back to the states a few years ago and have been hospitalized a number of times during bad flare-ups. I am currently going through a flare-up and will have two9 surgeries in one soon. I had a fistula repair surgery at Easter 2006 that went wrong. So iI am going to have a repair for that surgery and part of my colon removed after i get through this flare. I am currently taking colazal, 6MP, and remicade. Yesterday I saw my doctors and now i am adding endocort to my list. I have taken prednisone but my husband says it makes me mean. :) So I convinced my doctor into trying something else. I have a thing about weight so I hate steroids all together. I hate feeling tired all the time. I feel like I am letting my 15 year old son down and my new husband of two years down. Does this ever change?

Thanks for listening.

Leigh
 
Welcome :)
Pred makes me mean too...not to mention all the other crap it does.
I hope your next surgery goes better for you. Im sure you need a break from it, so hope it works out!
 
Welcome

Hello Leigh and welcome to the forum!
Yes..things do get better, and they will for you too!
Just hang in there and be patient.
Take a look around the forums, relax, read, and ask all the questions you like.
I'm sure someone will have been in the same situation
and be able to help you with your questions.

Just remember...it's going to get better...think positively! :)

Welcoming hugs~Nancy
 
Hi Leigh.
Welcome to the forum. I too am on pred. and them little pills make me moody and other things too. I cant get off them. I have to stay on 1 tab a day, if I try to get off all kinds of things happen that I cant handle. So I just stay on 1 tab for know. I hear you have a fistula. Me too. I have 2 right now. Almost side by side on my right bum cheeck. What went wrong with that ? Im still waiting to see a surgeon to determine what he is going to do about these fistula's. Can you explain to me what kind of surgery they did?




Thanks Tammy:eek:
 
Fistulas

Tammy Smith said:
Hi Leigh.
Welcome to the forum. I too am on pred. and them little pills make me moody and other things too. I cant get off them. I have to stay on 1 tab a day, if I try to get off all kinds of things happen that I cant handle. So I just stay on 1 tab for know. I hear you have a fistula. Me too. I have 2 right now. Almost side by side on my right bum cheeck. What went wrong with that ? Im still waiting to see a surgeon to determine what he is going to do about these fistula's. Can you explain to me what kind of surgery they did?



Thanks Tammy:eek:
Click to expand...

Hi Tammy,

I, too, have or had two fistulas. The one they repaired was a recto-vaginal fistula. They placed two setons through the fistulas. It is a bit difficult to explain a seton. it is sort of like a loop of tubing that the doctors threaded through the two wholes and then the ends of the tube are connected. The idea is to tighten the connection every few weeks so that it pulls through slowly and heals behind as it pulls through. Does that make sense? Well, my setons fell out within the first week. The fistula did heal eventually but it left my sphincter muscles very week, which causes a lack of control. So, I am looking at a reconstructive surgery when i am through this flare as well as having a portion of my small intestine removed which is very inflammed and hasn't responded to all my different medications. The other fistula I have has not been addressed as of yet. I hope your surgeon will see you soon. Do your fistulas leak "yucky stuff"? How long have you been diagnosed?

Leigh
 
Hi Leigh, welcome to the forum. I too have had fistulas, several of them in fact. I had surgery for a resection and a loop ileostomy leaving me with a stoma in order to repair my rectum where all the fistulae were. 7 months down the line and things appear positive. If you want to chat further, I'm here most days. Oh and the pred also made me very angry and scary, it does get better though.


Ruth
 
leighhi27 said:
Hi Tammy,

I, too, have or had two fistulas. The one they repaired was a recto-vaginal fistula. They placed two setons through the fistulas. It is a bit difficult to explain a seton. it is sort of like a loop of tubing that the doctors threaded through the two wholes and then the ends of the tube are connected. The idea is to tighten the connection every few weeks so that it pulls through slowly and heals behind as it pulls through. Does that make sense? Well, my setons fell out within the first week. The fistula did heal eventually but it left my sphincter muscles very week, which causes a lack of control. So, I am looking at a reconstructive surgery when i am through this flare as well as having a portion of my small intestine removed which is very inflammed and hasn't responded to all my different medications. The other fistula I have has not been addressed as of yet. I hope your surgeon will see you soon. Do your fistulas leak "yucky stuff"? How long have you been diagnosed?

Leigh
Click to expand...
HI
Thanks for the info Yes they leak yucky stuff (like puss) and they smell too. They are Painful too. I have had this wonderful Disease know for 28 yrs. lol Talk to you later. Im gonna lay down know.


TAMMY
 
Welcome to the forum Leigh. I know where you are coming from with Pred. I wanted to kill people when on it. I hope you start to feel better soon.
 
i have a fistula and it leaks that stuff :(

for me it becomes active when i run/walk but not as often when im sitting in one place / sleeping / beingin hospital
 
Hi All,

Thank you so much for welcoming me. Still suffering through a flare and it is driving me crazy!! The stomach cramps are terrible. The Entocort is making me mean as well as the prednisone did. :-( Has anyone developed Uveitis with their Crohn's?

Leigh
 
Hi Leigh,

another welcome here to the forum. I am sorry to hear about what you are going through and the doubts that you have (especially with your son). No one is perfect, and there is no perfect way to be a parent or a wife or anything really. Do not try and be something that you are not. You have to deal with what you have and just do your best to provide what you can for the others in your life. Do not let your health affect how you think of yourself or let your worry about actions you can not take. Focus on your health first, and then you can help others. By keeping yourself healthy you ensure that you will be well enough to provide for your husband and son.

It is interesting to see you moved back and forth between Europe and America. What differences did you find there were in both healthcare systems?
 
Hi Nancy,
The uveitis is driving me crazy! I keep seeing black spots and flashes of light. I am using two different eye drops but it has been over four weeks now. I have never had it hang on so long before. Thanks for the link!

Leigh
 
Hi Mikeyarmo,
Thanks for the welcome. My husband and son are very good with helping me. My husband is the best. He worries of course but none of the gross stuff bothers him. My son is a different story. He is fifteen and gets pretty grossed out by the "yucky stuff" and smells, but basically he is good about it. He does get upset when I can't go and take him driving (practising for his license). He is tired of me being sick.

The difference between health care here and in Europe is big. I had great insurance in Germany, private insurance, but the doctors lacked warmth. It was all business. Even when my son was born there it was all business. I have great doctors here.

Leigh:smile:
 
Welcome ! I hope you begin to feel better soon. Pred also makes me insanely mean, endocort not so much, remicade is great. I had no idea that those spots & "floaters" were related to my crohn`s! Go figure, I guess it "runs" from one end to the other. Haha.
 
black8.gif

I am sure that you will have a great time here and you will also make plenty of new friends ... jump right in and have some fun !!
 
Thanks!

Thanks so much. I am trying to be positive but right now I am feeling pretty rotten. It is nice to have a place like this.

Thanks all!!

Leigh





Karen said:
black8.gif

I am sure that you will have a great time here and you will also make plenty of new friends ... jump right in and have some fun !!
Click to expand...
 

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