A Light at the End of the Tunnel

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XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 10/20/2007 4:45 PM (GMT -6)   
Well, after seven years of no answers and unruling pain I have finally beem blessed with some answers.
AMEY- I can never thank you enough for giving me the strength to be assertive. It was since then that my GI finally started listening to me.
 
 I met with a colorectal surgeon on Friday at the Ferguson Clinic in Grand Rapids, MI. I thought it was going to just be talking, but before I knew it he had me sitting on the toilet straining well he felt you know where to rule out a rectal prolapse!!! He said with the results of my sitz marker and other symptoms I definately have colinic inertia. I have to go through the embarrasing anal manometry and defecography sp? next week and then we will discuss the total colectomy pending these results.  He went over a the surgery briefly, with risks and hospital stay lengths. I am very excited to finally see a light at the end of this tunnel. I have gone back and read many of the TC posts and have gathered some great information. It is so nice to be able to vent on this site to people who actually know what I have been dealing with for 7 years. My surgeon said he has done many of these surgeries, but only 4-5 for the reason being colonic inertia. I know that every surgery is different for everyone, but does anyone have any advice for me when I see him next week? what to ask? how do i know he is the right surgeon? should i get s second opinion? how long will i be off work? I am nervous, but excited. I have no doubts this is for me. I will keep you all updated.
 
PS how did you get though the humiliating anal manometry?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 10/20/2007 4:57 PM (GMT -6)   

Manometry is not that embarrassing.  I had it done when I was diagnosed with a traumatized sphincter due to surgery.  The test is very important to your overall care.  Just remember these professionals do this for a living and concerned with your best care.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/20/2007 6:49 PM (GMT -6)   
Xtreme,

First, thank you for your kind words. I had no idea I had been an influence to you and I appreciate your complements! I am glad you have found some answers to your illness. Like you, I suffer with extreme CI. One of the main questions I would ask is...how will this surgery help you deal with your disease? CI exists throughout the entire GI system. You are still going to suffer from CI. There is no way to avoid it. Unless someone removes your rectum, small intestines, large intestines and stomach,... you are going to suffer in some way. Having the TC removes part of the disease but you still have a small bowel and stomach and rectum to deal with. Knowing this, what does he expect your life to be like? Currently, I have a bag. I no longer use my large or my rectum but I still have CI and I still suffer the effects but not nearly as bad as I used to. Ask him questions about this. PLEASE WRITE YOUR CONCERNS AND QUESTIONS DOWN ON PAPER. THEN WRITE HIS RESPONSES TO YOU LIKE YOU ARE TAKING DICTATION. THEN HAVE HIM SIGN YOUR COPY OF THE PAPER THAT THESE ARE THE THINGS HE EXPECTS FOR YOU! These paper have been a huge benefit to me b/c many drs will say, "I never said that" or "I don't recall that conversation, Mrs. Duran." Well, I have it in writing.

Good Luck
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/20/2007 7:29 PM (GMT -6)   
Here is another idea --- take a tape recorder in with you. Even when you have someone go with you to help you "remember" everything that was said or discussed, many times just the shear amount of information gets overwhelming. Any good doctor or surgeon will welcome your thoroughness to get all the information that he is presenting to you. If there are any negative comments, I would be leary (sp?). Best of luck to you. Amey has a lot of good information for you since she also has CI. I have crohn's disease, quite the opposite results of CI.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 10/20/2007 9:56 PM (GMT -6)   
Thanks for all of your relplies. You all have some great ideas I will take into consideration that I would have never though about. I do have a couple other random questions. For those of you who have done the sitz marker test, did any of you have severe cramping afterwards. Ever since I completed about 2 weeks ago I have awoke in the morning with horrible cramping and pain in my abdomen when i fist pee and then it lasts most of the day. It goes away at night and then it comes back in the morning? Also, did any of you feel you had gained weight while chronically constipated? i feel like i have barely ate in the last two years, exercised, and somehow gained nearly ten lbs? just curious
liz

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/21/2007 1:03 PM (GMT -6)   
liz,

I always gained weight. I had to run and bike everyday to keep my weight under control. At one point I was working out for 4 hours a day and eatting very little. My body was storing every food and water molecule that I put inside. It was very frustrating to eat so little and gain. The less you eat and the more you exercise => dehydration. Dehydration makes you gain weight because your cells store up everything. I gained 19 pounds in the first 4 days I was in the hospital. I was only allowed the IV and no food. I gained because my cells were so dehydrated that they were storing up all the water from the IV fluids. Hopefully after the surgery your body will regulate itself and you will not go through this. Just keep in mind that you CANNOT gain 10 pounds in under 5 days....it is only water retention. Water is much easier to lose than fat :o)

Take care,
Amey
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 10/21/2007 6:44 PM (GMT -6)   

Thanks Amey : ) Your a wealth of information. I feel so much better after talking to you. For the ammount i eat and the exercise i do I should weight 90 lbs, but instead i have gained. I hope all is regulated after the surgery:) I will remember the water weight!!! Thanks again

LIz

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