GILDA, HOW ARE YOU?

Hi Gilda,

Been away for a long tim on vacation, wondering how you are doing. Please post if you see this. Rosemary

Hi Rosemary & Hodaya!

 

It has been quite some time since I posted; thanks for asking about me.  I do think of both of you often, also.  As you may remember, I had 3 surgeries within a one year period!  These 3 surgeries started one year after my sub-total colectomy with an ileo-rectal anastamosis!  Anyway, what I had done in the last year (or so) was:

 

April 2010 - surgery to eliminate a "blind loop" of intestine that occurred after my Sub-Total Colectomy

 

Nov. 2010 - temporary loop ileostomy because I was still having pain and too many (15/day) Bm'S per day after having Sub-Total Colectomy

 

April 2011 - temporary "end" ileostomy because the "loop" wasn't working right; had retracted plus I was"eliminating: in 2 ways - the normal way and into the bag.  At first I thought I could live with this but the "butt burn" was too much to take plus I felt ill (feverish; couldn't eat) very often!

 

Anyway, now it has been 2 months since I had my last surgery and I am finally feeling pretty good!  Life sure isn't perfect but it is nice to be able to eat and I have gained 3 pounds!  I still dream about having a reversal but i probably will never do it unless doctors learn how to make a "fake" ileo-cecal valve . . . . I do have a friend (young; 22 yrs old) who is currently at the University of Chicago Hospital (I think) having stem cell injections to cure her Crohns Disease.  I wish her the best and her doctors are very hopeful.  Unfortunately, for us who have had our colons removed i am not too sure that "stem cell" therapy can do much to help?! 

 

Anyway it is great to hear from both of you!  Please write again and tell me how you are doing?  You have both been a great help to me in the past.  Hodaya, I don't think I would have survived the horrible ordeal i went thru (Nov. 2010) surgery, had it not been for your phone calls and encouragement.  I still hope we can all get together someday.  Can either (or both) of you come to San Diego for a visit this summer?  I would love to meet you in person!

 

Love,

Gilda

Gilda, i'm so glad to hear you got an end ileostomy and it works right! there was no way you could live with the old one. boy that loop one gave you grief!!! from all the stories you told us... it sounded aweful! but i'm so glad it's FINALLY going right for you :):)

oh how i would LOVE for all of us to meet one day. meeting Rosemary was absolutely more than awesome! my sister and 2 kids have just arrived here last Thursday. they are going to stay here for 9 weeks!! but one day i'm gonna HAVE to come to the U.S.A. i'm still not working tho, and obviously will need lots of money to visit the U.S.A.

"fake" ileo-cecal valve . . . . "stem cell".. never heard of those, but sound interesting. i hope it works for your friend! hope you keep doing well :):) and yes, get out there and start living! and please keep us posted from time to time. miss you all.

Hi Gilda,

Yes, I am "married" to velcro. I wear the convatec with the security flap. The end of the bag rolls up and velcros closed THEN there is an extra flap that velcros the whole thing shut. When I first got my ileo back in 2007, in the hosp. they tried one of those with a clip. Not only could I not stand the clip between my legs (who could stand that?) but the clip would flip off at night. Cannot even imagine them still making those with a clip when velcro is around.

Yes, "get out there" as is the slogan of Royal Caribbean cruise lines. I have some weird lightheadedness issue that still persists with EXTREME sensitivity to heat, maybe from no longer having the use of my colon and having to drink three times the amount I had to with a colon. BUT it is as it is and regardless of what, "minutes count"...........I wish I could have been born knowing and living to this mantra, but what kid is? I think it's acquired knowledge.

Best wishes for getting out there and am so glad your new ileo is doing the trick for you. 38 years of pain and illness is a LOT of time to make up for. Hodaya said she was going to try and recapture 17 "missed years". I just hope I continue to stay as well as I am and I really value that I had 50 super years! What is so horrid of my experience was that it was humans doing unneeded surgeries on me at 50 that lead to my being where I am today. BUT on the other hand had my ileo doc not existed to save me the best that could be done, I would have died at only 50, so here I am at 55 and hoping for more good years. Irony all around on my story, but it is as it is.
Rosemary

Hodaya, I am so glad that you will come to see me when you visit San Diego in the future! I do belong to an Ostomy Support Group here in San Diego but I still feel closer to you, Rosemary & Lizzie because we have been communicating for longer plus, sometimes it is easier to "bare your soul" in writing rather than in person. I still have my "down" days but I am happy that I can now eat and am gaining a little bit of weight (6 pounds since my April 2011 surgery). I guess what I have problems with the most is "my body image" because of having a stoma. My husband is a very kind person but I can tell it is difficult (intimacy) for him sometimes. I guess I should just be glad that I have a husband and that, in general, he is pretty understanding. I know we all have to be grateful for the blessings we do have. Once agin, have a great time with your sister! My sister will be visiting me in late June; I am looking forward to that!

Gilda