ANYONE IN TOUCH WITH GILDA?

Hey,

If anyone is in touch with Gilda by phone or text, give us an update if you can. Last I knew she had a bowel twist that showed up on ileoscopy. I am worried about her. I called scripts Encinitas but I did not have her last name. I know her first name is different that her posting name but never knew her last name.. I should have kept her tel number but with all my issues it is long lost.

Rosemary

Gilda, Dr. Talamini is all good. You will do well. My CT's and Gastrograffin showed nothing but I am severely distneded, stoma is swollen, and I think I am going to yet another hospital ER for opin. MY normal one is still in the holding pattern. LOcal stoma nurse said this is emergent. Even the vet said that the stoma being so swollen is NOT a good sign. Not much output at all. Good luck with yours. I need to call a friend and see if she can go with me. What a mess. Good luck to you and thanks for responding. Rosemary

Hi Gilda,

Thanks I will email you. I am totally into email. I was in excruciating pain today as though some bowel was scarred to the inside of my abdominal wall and it feels like it is going to tear at any time. I do know at the end of the day when I have to take all that stuff that washes me out like grape juice and prune juice, I can feel a LOT of pain between the stoma and the naval. That is the direction the small bowel heads in from the stoma. I learned of that when they put in the catheter for the retrograde enema xray. I sooo wish I had let the GI doc do the ileoscopy, but when he saw how narrow the stoma was he said he likely could not even get the scope in. So stuff showed up on your CT and your retrograde enema xray. And my imaging tests showed nothing. Mine sure did not pick up whatever my issue is. If I make it to May 2 I will ask the GI if he would be able to see a twist on the ileoscopy and IF he had a pediatric scope maybe it would shed some light on my issue.

Was your feeling so horrid afterwards from the ileoscopy though? Or were you just going down and it happened right after the ileoscopy?

UC san Diego has some advanced imaging that they use for Crohns that could also be used for detecting small bowel narrowed by adhesions. I think it is Cine CT Enterography. I even wrote to them one time prior to getting in all this trouble.

Does DR. Talamini do adhesion take downs and stoma re-do's? Maybe I am wasting my time around here. Flying commercially there would not be good as flying with a closed stoma not such a great idea, but maybe I could get a low altitude medical flight, but then there are the Rocky Mtns. to cross. A train would take forever and I'm not well enough for all that jostling.

I wonder if he ever flies to other hospitals to work on patients, like I could pay him to fly east to help me. Not sure if docs do that but I have heard of specialists flying into here or there to work on patients. Let me know what he plans for you.

A LOT of how we do medically depends so much on where we live geographically and where we are able to get to.

Lying on my right side used to press my stoma open and make poop come out in the night. Now it does not work. Believe it or not, I slept 12 hours last night and I woke up with a TOTALLY empty bag and not even any gas in it. Also when I am lying down there are absolutely no bowel sounds. I have NO CLUE what that is all about. Other than it really scares me.

My friends and neighbors are being great! they are all so concerned. So many things in life I should have done differently. THEn of course avoiding going down this road but I did not know. Now I am like oh, if only I could go back to the "good old days" of having a working ostomy! How our expectations change with things. When it worked it was very do-able, not like we came into this world, but very do-able. I had been proud of myself for adjusting so well. I really prayed that the blessing the original ileo doc gave me would keep working. I thought for sure longer than 4 and a half years, but we never know. Let me know what Dr. T. says. You are sooooo lucky to be near him. I feel good things will come for you. Rosemary

Post Edited (esoR) : 4/24/2012 8:42:29 PM (GMT-6)

Hi Rosemary,

I can hear the fear in your words.  Don't be afraid, I think there really is help out there for you.  I think I told you that my problems started when I was 20 and I am turning 60 this July!  Finally after 40 years of seeing many, many doctors (maybe as many as 80) they are starting to figure out what the real cause of my pain has been all of this time!  It's sad but I now think my hysterectomy at age 31 (they thought problems due to endo),  and having my colon removed were all for nothing!  Way back when I was 20 years old I started to have a throbbing, jerking pain about 2" above my navel, a little while after eating.  It would take hours if not days for anything to move thru my system (sometimes I couldn't go to the bathroom but once or twice a week.  My colon grew all out of shape (just gas and pressure can cause this).  Once the colon gets too long or too big, peristaltic action stops.  Since they couldn't find anything else wrong they assumed it had to be a dysfunctional colon.  I only had 2 upper GI's thru-out all of these years; first one around age 22,  then the 2nd one around age 45.  They both caused me terrible pain and it took days to get the Barium out!  They said they didn't see anything.  When they did the test for Gastroparesis they said things moved slowly and I was within normal emptying time but on the lowest part of the scale for "normal."  Now it is looking like maybe all of my trouble originated in my small intestine in one particular spot!!!!  My gastro said he had to use a really small scope to do the ileoscopy (altho he called it a colonoscopy thru the ileostomy . . . . same thing, I think).  He could only go in 2 ft before seeing the twist.  Anyway between the various tests and 2 great doctors (I think; we'll see), maybe I will finally regain my health by this summer!  I think you should come to San Diego, see Dr. Zakko and Dr. Talamini and stay with my husband and me (I have 2 extra rooms).  You and I can help each other.  I really mean it Rosemary!  I want to help you.  I will email more to you now.

Gilda

 

One quick idea Rosemary. Lizzie told me recently to order a product, online, that is jello infused with 28 grams of protein. You could text her and ask for the name of the product or type in "medical foods, jello" or something like that. I am still having great difficulty eating also. I live on Ensure and a little soup but I have lost 13 pounds in the last 5 weeks! I need to order some of that jello, for the protein if nothing else. Also I should be receiving a product I ordered to try and break up adhesions (maybe even do something about the aneurysm they found). I started looking for Serazyne but ended up ordering something similar; just from a different company. In addition to breaking up adhesions it is supposed to reduce or eliminate inflammation. You may want to look into these products! Good Luck and Remember: you have people on your side; you aren't alone in this! Let me know how I can help.

Post Edited (Gilda) : 4/25/2012 6:17:06 PM (GMT-6)

Thanks for the scoop. Is the adhesion inflammation thing a pill?

I did get some protein jello that tastes like engine oil but I will investigate other brands. That is a good tip.

Through one thing and another I am being seen by a second opinion surgeon re: my recent issues. Have to get up and be on road really early. Lucky to get in. HOPE he views my case through HIS eyes only uncolored by the current surgeon who did not even check my stoma. The GI doc who was so good to me says this is not digestive but is stoma issue as I thought.

Wish me luck. Thanks for update. Rosemary

PS There is this blender called vitamix. My former nutritionist and neighbor brought it over the other day and turned a cooked chicken breast literally to chicken in water form. IT was soooooo good. I have to order a vitamix. It is like a blender on steroids it is soooo strong.