Bleeding Ulcer 3 + Yrs Out

 Hello,

Sorry to meet you on this board.  It would take me an hour to describe my post-op journey of constant illnesses.  My doc did try or at least listened to me for 1 year but yr 2 I knew he'd lost interest.  I stayed away for a yr because I was disgusted and had so many problems that other docs tried to help me with but none of them saw any link to my RNY either.  Finally had ER crises (big open exploratory surgery) and was scoped post-op.  Found a "huge" ulcer at the anastomosis.  Sent away with PPI Rx and a "we'll re-scope in 3 months".  Only that PPI and the next 3 others caused a bizarre mouth syndrome (loss of all taste, painful burning of tongue and roof of mouth, and thin skin that tore easily).  The carafate (Rx that coats the GI tract) made getting liquids down much easier but carafate also blocks calories and nutrients.  I am wasting away.  Any have been since Day 1.

Re-scoped Wed and now ulcer is a bleeding ulcer that has eroded so deep that 2 arteries are exposed.  They clamped those and said "let's try PPI # 4 and hope it is the charm".

Opinions - I want to have a feeding tube put in so that 1) the ulcer can rest and heal (maybe) and 2) I can finally get some calories and nutrients.  

I'm truly afraid of these docs by now.  I know if this goes on, 1) my ulcer will perforate or 2) I'll face a big surgery to remove all of the diseased tissues and so on.  And if I don't tolerate PPI's at ulcer prevention levels, why would I do so after that?

What do you think?  Anyone?

So sorry you are dealing with that.  Hope you are better.
But.... as far as I know - if the meds will not do the job - you may look into a reversal - or even complete removal of the pouch - the dammaged tissue.   People live with that... I knwo some... not WLS related... (it was cancer).

(HUGS)

I was also the patient that had every possible complication.  Inevitably, RNY patients are much more prone to ulcerations due to the fact that the small intestine isn't able to handle the amount of acid that it receives after RNY.  A couple of months ago, I finally relented and had a revision done.  I have a wonderful surgeon, but I was the freak patient.  You cannot control how your body reacts, but you do still have options.  Everything you are going through is a complication from your original surgery, so your insurance (if you are lucky enough to have it), should cover a revision as long as the surgeon doesn't use the word 'sleeve'... even though that's probably what you should be changed to.  Many people just call it a revision, some say reversal, but overall, with to remove the ulcers, you will likely need to be revised to a VSG/VGS ... a vertical sleeve gastrectomy.  This would elongate the stomach, remove the excess 'bag' portion of the stomach, leaving you with a tube or banana shaped stomach.  This elongates the path that your stomach acid has to travel.  Although you may have to have a few inches of small intestin removed if it is ulcerated, the rate of malabsorbtion is actually much less with the revised sleeve than with your RNY, so you should eventually have some weight stabilization.  Look for a Bariatric Center of Excellence and go see the surgeon.  You DO HAVE OPTIONS and you don't have to live your life this way!!  (((HUGS)))  Best wishes to you!!! 

 Thank you both for your replies.  It is so helpful to speak with the jury of my "true peers".  I have gotten myself confused about reversal vs revision.  So thank you for straightening me out on that.  

Update:  PPI # 5 Dexilant has not gone well but the new symptoms are not the same as before and not so clear cut to be able to say the Dexilant did it.  But I saw the GI doc on Monday and it doesn't matter anymore.  I'm still having problems eating and GERD and weakness, etc.  So, I will be re-scoped next Wed and if ulcer isn't healing well (and how could it in 1 month since last scope?) GI doc says he can't help me further, the ulcer is too dangerous and he will send me back to my bariactric surgeon.  

I will insist on IV nutrition which I should have done and did ask for 6 months ago when GBS referred me to GI.  If I have to face another major surgery, I'd be in much better condition to come through the recovery. 

Jessica - did you have the revision you explained so well?  If so, has it helped to stabilize your weight and improve your overall health?  Again, I am so grateful for the help.  K1DG

I too have a anastomotic ulcer, sometimes called a marginal ulcer. They are talking about doing a revision on me. I actually absorb food quite well three years post op but I am tired of the pain from the ulcer. It isn't bleeding. Just wondering how you are doing?