UPDATE!! Stoma too large - Endoscope Monday!

Hello - haven't been to this site in ages!  Post op from 2/01 - I lost 130 lbs and have gained about half back!  Had been doing pretty well, except for the past year...especially in the past month!  Something is wrong and I have gained 10 lbs in 2 weeks! My surgeon will be scoping me on Monday - this will be my 3rd scope - first one was just a check up and the second (done about 2 years ago) was to inject the stoma to cause scar tissue to close it up.  That worked for about a month, decreasing the amount I was able to eat.  But now we think the stoma has completely stretched and food is going directly to the intestines and is not staying in the stomache.  So the plan is to be really agressive with the injections to close the stoma as much as possible.  I have been told to plan on a blenderized/liquid diet for a few weeks.  Part of me is over joyed that I'm being given a chance "to start over" and part of me is scarred that I'm just going to screw it up again! Anyone else been through this? And what were your results? Thanks! Just returned from the hospital after having my Esophagogastroduodenoscopy with Sclerotherapy - and am still feeling a little  dopey, so forgive me any typos! Other than the stoma opening being about the size of a quarter - everything else was just fine! No staple line disruption and the small intestine has no evidence of stretching (or diverticula).  My Doctor performed the Sclerotherapy which is injecting a medication around the stoma to cause swelling and then scarring - the intention is to shrink the stoma.  I was a little uncomfortable right after the procedure, but feel little pain now.  It is recommended that I be on just liquids for the next day or so - then blenderized small amounts of food to see how they are tolerated.  The complete effect of the procedure could take up to 6 to 8 weeks to occur.  The prognosis is to cause mild weight loss or help stabalize your weight.  As far as I'm concerned - I'm going to use this to be my "wake up call" - it's making me eat again like I did in the few weeks after I first had the surgery.  I'm going to take this opportunity to re-teach myself how to eat and break all the bad habits - so I don't have to go thru this again!  Wish me luck!

I was scoped about 9 months ago and was told my opening is abou the size of a quarter--should be about the size of a dime.  Was told I would not lose any more weight, but I have lost about 10 lbs since them and am at goal weight.  I have to work pretty hard to keep it off.  I am 2 yrs out and am scared every day that I will gain.  My doctor mentioned something called a 'spider' that can be put in, but it has not been approved.  Doctor has seems to have lost interest in the process and since I am at goal does not discuss.  I have a feeling a revision of some sort may be in my future. Good luck on Monday.  Let us know how things goes.  262/130  5'1"   

Hello-  Like you I haven't been to this site in forever, had surgery 05/02 and lost 140 lbs never got to goal weight was shy about 30 pounds and have gained back about 50 pounds in the last 2 years.  I know part of it is my eating choices and drinking alcohol..  ( have a good social life) however my food choices are still primarily healthy.  I can eat more then I could initially but still not enough to really put that kind of weight on so I went back to my doctor and was scoped and same kind of issue opening a little larger, stomache a little larger but I also have what the Dr says is jejunum diverticuli  ( intestines enlarged/ swollen at the base of the new pouch)  making a new 2nd pouch for food to push through and sit there, thus eating more to fill full.  I have concern's about a new surgery but at the same time want like you to talk to people that A.  have had the same experience or B.  what if I don't do the surgery what will happen in the long run ie health not just weight.  Thanks for writing your story it helps to know this is not an unknown issue yours I mean,  still looking for answers to mine.

Hey Nicole! I'm sorry to hear about your situation, but so very glad that you are on the road to determining the problems and rectifying the situation!  Please keep us informed of your progress, as I know that many here share the same concerns about whether or not our pouches are still surgically intact! Question:  Aside from the Dope & Scope to physically determine the cause of your weight gain, were there signs BEFORE this procedure?  In other words - what were your food choices like when you started the weight gain?  Were your choices still healthy, yet you were constantly hungry because food wasn't staying with you? 

I've done the "Cottage Cheese Test" on myself in the past and have determined that my pouch will hold approximately 8-10 oz of (soft) food at a time; however, I've never really determined HOW LONG I remain "full" following a meal.  There are times that I can eat a meal and an hour later feel as though I can eat another full meal, but I have always attibuted that to "head hunger".

I'm almost 4 years post-op, never reached goal and about two years ago, slowly began gaining some weight back.  I'm at the point that it's manageable to get under control, but I'm scared that my pouch might be stretched and I'm facing the same issues you are.  The worst part is that I'm TERRIFIED to find out the truth!!!

Please keep us informed of what you find out!

Hugs!

Kristi 

 

Nicole - This post is very intersting. Question....what causes the stoma to stretch? Can it be prevented? Thanks for any info you have. Donna

Donna C ~ The stoma stretched due to my eating habits!!! I developed a nasty habit early on of drinking when I eat...and it was evident that I was "pushing" the food thru!  I could easily eat up to 2 cups or more at a time.  And I was eating often....sometimes I wonder how I "only" gained 50 lbs!  So now I'm on day 3 of applesauce yogurt and mashed potatoes....and very thankful!!  I've already lost 8lbs!

So glad you are recovering now.. and on the way to a new begginning..  I didn't know about the injections.... that is very interesting...  I will have to remember that.. My doc says there is nothing wrong... but I haven'f been tested.  I know I eat like hell. and have to stop... your wake up call is a good one and one for me to learn from..  thanks for sharing your story.