Thanks for your advice

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rovin1959
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Date Joined May 2009
Total Posts : 159
   Posted 4/22/2010 5:47 PM (GMT -6)   
I asked for ,you folks were kind enough to reply. I have been struggling with crohn's fistulas and non healing symptoms for 3 years. I have decided to go to talk to my colon-rectal surgeon. He and I both know it is time to return to my" bag lady" life again. I cannot lose anymore weight,handel the pain,and live off pain pills. Any words of encouragement ??? I am making the call tomorrow.

Mary Lynn


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 4/22/2010 6:06 PM (GMT -6)   
Mary Lynn,

You go girl! I suffered with fistulizing Crohn's for 7 years, and that was the best call I ever made! You will feel so much better once you're though surgery and don't have to take any medicine anymore. There is a bright, shining light at the end of the tunnel. :-) Please keep us posted on what the surgeon says.

Hugs,
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


rovin1959
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Date Joined May 2009
Total Posts : 159
   Posted 4/22/2010 8:05 PM (GMT -6)   
Cecilia Thanks. He and I both agreed about a year ago,that it needs to be done. He is a rather cool doc. I call him Cowboy,beacuse he wears them in the OR. So..... it really just a matter of when. My husband is totally against this decision. NO,NO,NO he is saying. I was wearing a bag when he married. He said he thought it was temp. Well, it has not gone down that way. MY MARRIAGE IS NOT TOO HOT, sorry caps were on,. He is a hard drinker and I quit several years ago. Anyway....he will also freak because he takes my pain pills. so sorry to vent, this is however a major decision. Help girl!! I know this is not a marriage therapist forum!Stress is stress!

Mary Lynn


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 4/23/2010 6:52 AM (GMT -6)   
Mary Lynn,
I am so sorry to hear that your husband is not supportive of your need to have surgery, but you have got to do what is best for you and your health! My father and brother (both doctors, mind you) were trying to talk me out of having a proctocolectomy the night before my surgery! Had I listened to them, I would probably be dead right now. Other people do not (and cannot) understand the pain and misery that a bowel disease brings, like those of us who have experienced it. Listen to the Cowboy, he knows what's best for you!

Hugs and prayers,
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 4/23/2010 8:17 AM (GMT -6)   
Thanks girl. I have had this since I was a teen. My daddy was also a doc. I have a strong family hx of colon cancer. Mine (disease) was removed,and doing well other than what is going on now. Crohn's was ucky with the bag. Colon felt great but a bag of liquid feces was not fun. Perhaps the sx and a God given remission is the only way to go! Still have not made the call. What were your dx's that put you where you are???

Mary Lynn


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 4/23/2010 6:41 PM (GMT -6)   
I had Crohn's in the descending colon and rectum, but not in the small intestine, so they did a proctocolectomy (colon and rectum removal) with permanent ileostomy in 2006, and I've been disease free ever since.

Was your output watery because you have Crohn's in the small intestine? I recently found out that there are gel tabs that you can put into the pouch to thicken the output, which was good to know. Plus, there are a lot of foods you can eat to help thicken it, too, like oatmeal, bread, pasta, potatoes, bananas, rice, and peanut butter. Just wanted to pass that along, in case you didn't know.

Hope you have a good weekend,

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 4/26/2010 7:34 AM (GMT -6)   
Mary Lynn~I had the same surgery as flchurchlady and don't regret a minute of it!!! Sorry that your husband doesn't understand but it sounds like he has his own demons:(

Call your doc!

You can also use Imodium and Psyllum to thicken output...it doesn't have to be liquid.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 4/26/2010 4:29 PM (GMT -6)   
Once again,thanks for the replies. I still have not called. Why am I dreading this so badly? Yes, the colon,rectum and small intestine are all affected.  Last time I wore my bag,I did pretty well after 5-6 months. A little weight would make my face look better. Yes, even @ 51years old, I care. My husband always say's....."my wife is so skinny and perfect." Forget him... I don't want to get fat,but 20lbs and then being able to jog again would be nice. Sorry if I am venting.One more last thing. I am a recovering alcoholic. One addiction ,pain pills now is not in my long plan for life. I only take 1/2 my doses,and have played around with none. It does help the big D,but it should not take long to taper off. I cannot believe I am telling you all this. I guess you are closer than family! Thanks again!

Mary Lynn


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 4/27/2010 5:57 AM (GMT -6)   
Mary Lynn,

Thanks for opening up. It's completely normal to dread surgery. I've been there and understand. It took me 7 years of chronic pain and diarrhea to finally agree to have surgery.

Before my proctocolectomy, I had a rectovaginal fistula for years, which ended up creating a large abscess on my lower right butt cheek. It was the most pain I have ever felt and had to have emergency surgery to open it up. I ended up with a large, open wound on my butt for months and had to take pain medicine every day, because it hurt so much to sit. I remember thinking how easy it would be to become addicted to the pain meds, because they took the pain away. But, what I found out was that when the wound finally healed up and the pain was gone, there was no need to take anything to make the pain go away. The only way to be medicine-free is to be pain-free.

When it comes to your fear of surgery, maybe this will help. I was discharged from the hospital 4 days after my proctocolectomy and was out driving and grocery shopping 2 weeks later. I've had zero pain ever since and am healthy enough to work full time and exercise. Please don't worry about gaining weight, because once you are healthy and can exercise again, you will be in the best shape of your life!

Just take one step at a time, and the first step is to call your doctor. Are you on any medicine to try to get the disease into remission? Remicade worked well for me for several years. There is also Humira, which is more convenient than Remicade, since you can give it to yourself at home and don't have to get it through an IV. You can beat this, just like you beat your addiction to alcohol. You are a very strong woman, who deserves to be healthy and happy! :-)

(((BIG HUG)))
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 4/27/2010 10:25 AM (GMT -6)   
You ar soooo nice. To answer your question, I have been on remicaid and self injections of humira. Old drugs,new drugs, pred, etc. As folks say around here...."this is where the rubber meets the road" My cowboy doc said this day would come, and it has. I was wishing for just 1 good summer! I live on the coast of N.C.  If he got me in within the next few weeks,I could be on the mend by then. As I look now,yes I am worried about looks(,get over it men) no one would look at this skin hanging where there was once muscle!! Ok I will call today! Wish me luck!

Mary Lynn


rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 4/28/2010 4:15 PM (GMT -6)   
Call has been made.

Mary Lynn


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 4/28/2010 4:58 PM (GMT -6)   
Good for you! :-) Dr. Cowboy is going to take good care of you.

Love and prayers,

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/28/2010 6:24 PM (GMT -6)   
Good Job, Mary Lynn!! Keep us posted :-)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/28/2010 8:43 PM (GMT -6)   
You gotta do it for yourself! Proud you made the call :)

rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 4/29/2010 10:41 AM (GMT -6)   
Thanks again. I was offered an appt. tomorrow. 2 hour drive. They are so good to me. Pushed it out until the 14th. Said, they talked about me at times.Ain't I special. We shall see. I do not know what I would have done without you! 

Mary Lynn

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