Moment of Truth....Back in hospital AGAIN!

You guys may remember me. Sorry I've been MIA for awhile now....life has been crazy!

I could really use all the input I can get! I had an endoscopy on Thursday and was found to have severe bleeding marginal ulcers AGAIN!

My choices, at this point, are a totally gastrectomy (removal of my entire stomach and connecting esophagus to small bowel) or reversal of my RNY. I have had chronic and severe marginal ulcers for a year now.

My original surgery was November 2013 and for the first year and a half I did fantastic! No issues......until all of a sudden one night I dropped to the floor and started vomitting blood uncontrollably and had to call 911.

My surgeon did a revision back in September and removed all of the ulcers at the anastomosis. A repeat scope two months later in November showed them starting to recur. Fast forward to today....a repeat scope shows them very deep and bleeding again. I was admitted right away.

All of this is despite being on FOUR different types of stomach ulcer meds (Prevacid, Pantaloc, Ranitidine and Sucralfate). We are at a total loss as to why this keeps happening!

Another revision is not really possible as my pouch is already so small. Neither of the two options being presented to me sound good as the surgeon said both are very big surgeries with risks.....but so is leaving these ulcers and having another major bleed! I've already had multiple blood transfusions to combat the blood loss.

For the record I have never smoked a day in my life, have not had one sip of alcohol or caffeine since the day of my RNY. I have also never touched an anti inflammatory! There is truly no reason this keeps happening.

I'm so tired of being in pain and feeling like I swallowed a ball of fire! Has anyone ever dealt with these marginal ulcers and had ANY luck in treating them!? I'm so scared to have surgery again. any suggestions would be greatly greatly appreciated. 

The ONLY thing that I seem to respond to and feel pretty good is when I am in IV acid meds. I just wish I could go home in these for a few months to let these ulcers heal. I'm being told it's not possible, but I'm not ready to give up yet. 

If I have to, I will fight to get a PICC line inserted and drive to my local CCAC (community care centre) to have the meds run twice per day. There has to be something that will work.....I'm so sad and scared. 

I am so sorry you're dealing with this. This sounds truly horrific. I don't have any advice to offer but sending you good thoughts and hugs.

Have you been in touch with your centre since this has happened? Has your medical team indicated which might be the better option? They both seem so extreme and again, I'm sorry this has happened.

Your prediciment is horrid.  Have you thought of posting the question on the RnY forum?  Perhaps someone there has had to face these choices.

No advice, but my heart truly goes out to you. 

I don't have any experience with ulcers so can't help there but I did want to support your energy to advocate for yourself and being creative and thoughtful with what your options could be!! That strength comes through loud and clear in your post and I applaud you for caring enough about yourself!! Don't lose faith and keep working to find an answer!!! I wish you strength and luck as you continue on your journey to find the right answer!!

So sorry you are going through this. No answers for you but sending out healing prayers and hugs.

So sorry to hear of this. I will hold you in my thoughts and prayers so that everything works for the best for you. I am imagine you are scared. It is natural to be. Sending you positive vibes and virtual hugs.

I have been in the same boat..and have been mia from the forum as I wasn't able to sign onto my account until recently.

I too have been repeatedly hospitalized, recently just last week with marginal ulcers.  I too had a revision done this summer but continue to get them.

I am on a PICC line and have homecare come in my house every night to hook me up to parenteral nutrition. (so not sure why you were told you had to drive there 2x a day).

I have also been referred to Hamilton /McMaster/St Joes and have seen a specialist, and will be having a revision to a sleeve done on March 22nd.  I had two choices, either a full reversal or the revision to a sleeve, which has more complications, but is what I am choosing.  If the sleeve fails, then I will have a full gastrectomy.  But hoping it doesn't come down to that.

Sending you positive thoughts.  If you would like to chat privately, feel free to pm me.

Vicky

Sorry to hear about the problems you are having.  Is there any chance it is related to kidney problems?  I have heard that can cause ulcers in the stomach over time.  I am sure that your doctor has checked this but it couldn't hurt to ask.  Is there any way you could get a second medical opinion on your options at this point? I truly hope that those ulcers go away and never come back.  Hugs to you, please let us know how things go and take care of yourself. 

What you are going through is horrible. I hope they find a permanent solution for you.