kmsbanr

6 years post gbs rny now recurring ulcers and pain probable revision and ? Wilkies Syndrome

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Hi everyone,

 

Its been a long time since I posted here after GBS RNY 4/12 and I am sorry this will be long.  I am most likely facing a Revision soon after 4 years of ulcers and pain.  The last 4 years has been challenging but I believed by following orders I would go back to how I felt before my first ulcer.  I did great and felt wonderful post bypass!  After my surgery I lost all  excess weight in 6 months and felt wonderful.  I expected to continue in that manner.  In 2014 I was diagnosed with Primary Parathyroid Hyperplasia and had 31/2 glands removed.  I had reviewed my labs after my cardiologist advised me to see my endocrinologist due to ca 10.7 and mild aortic calcification. I found elevated calcium levels going back ten years which my pcp did not address. My calcium levels are normal now and the Osteoporosis has slowed using Strontium.  I initially thought it was from my calcium intake but that was not true.  My endocrinologist was worried about the drastic change bone density so July'14 she and my pcp worked out how to slowly wean me from ppi to H2 blocker when with the study  that PPI's worsened bone density. Fosamax etc not great for pouch and I did poorly with Prolia side effects.  Everything seemed ok until Nov  I started to have issues with flank and abdominal pain, nausea, occ vomiting and trouble eating and drinking.  I was sure I had a kidney stone but ua's were ok.  It made sense with the parathyroid disease.  My surgeon was no longer in the country and I had not chosen a new one and was getting labs by pcp.  I did email him and he said I needed an Endo but it didn't make sense to me that I had flank pain so pcp increased H2 blockers.  It did help some but in Jan. 15 the abd pain intensified where I had to lie on my left side after eating and the pain would go away.  I was losing weight only tolerating liquids.  By mid Jan I couldn't take it anymore and was in severe pain even when not having intake so went to pcp sure it was kidney related still.  After CT I was diagnosed with Renal Nutcracker Syndrome. Radiologist brought me into a room showed me the CT and drew pictures to explain and said there was a procedure to relieve it.  Good news and no ulcer!  Went home with my pain pills but did not get any better and actually couldn't get anything down.  It came straight back up.  Was in touch with pcp daily and after 4 days she said I should go to ER for pain control.  I agreed to go the next day if no better.  Woke to a blizzard and no better.  Almost passed out walking downstairs and fell.  I was in denial I guess and still stayed home but called my clo-rectal office and the covering MD after listening to the story and reading ct report said he thought I also had Superior Mesenteric Artery Syndrome due to the weight loss.  He had seen it during his bariatric rotation and it could be fixed with surgery.  With the blizzard I wanted to wait till next day and he said to sip my shakes to keep up my protein and call pcp in am.  I did that and after plowed out next day went to ER.  After 6 hr wait was finally seen asa I became more distressed and anxious.  I thought it was from the pain and vomiting but after labs were done found out my Hgb was 4 points lower since the last week and in 1/2 hour was down to 7s.  I had an ulcer missed in the firast reading and the revised was not seen by my pcp.  After 4 day admission with blood transfusions started on ppi's again and an Edno that showed huge 4cm ulcer around the anastamoses and it was 3 cms deep.  They did not however find an indication of bleeding but had waited 2 days to do it.  The area showed multiple sutures and surgical clips even in the apex.  They did not remove them.  I would later learn that it was advised to remove them to prevent future ulceration.

Found a new practice and follow up Endos showed remarkable healing but GI's would not remove suture or clips.  Inflammation and pain with eating and drinking with the same abd. pain continued.  MD said after 6 months that if continued he would do exploratory laproscopy exam but before that he remove the suture in the apex because he said when I had intake it was being pulled on.  After endo he had removed it but none of the others even though I had begged him to and remove the clip.  His reasoning was there was no inflammation around them. Over the next 2 years I had multiple endos with continued inflammation and pain.  2/17 he found a 2 cm ulcer at a suture and removed suture and the apex clip fell out with the endo.  He thought I would do well.  After 2 years on 40mg Protonix bid it had failed to prevent ulcers.  I had had a TIA the previous Aug and my daughter was very concerned with the AHA report showing high dose PPI's esp Protonix showed high first time strokes.  Md agreed to me  trying H2 Blockers again. 11 days later I had intense spasms and the all too familiar left flank pain relieved by left side lying.  I went to see if I could get an antispasmodic so I could eat and drink.  PA was worried that I might have Pancreatitis and sent me to ER.  My h&H was below my normal level so with the pain I had a CT and was admitted.  Labs were done bid and were dropping slowly.  I was too scared to take Protonix IV my only choice from the formulary  but did take IV Pepcid.  GI team came to my room 2nnd day and were excited to say they believed they had identified source of flank and abd. pain.  Angle of SMA to Aorta was 7 degrees with 25 degrees the low normal value.  In their minds it proved Wilkies Syndrome (Superior Mesentery Artery Syndrome).  This to them made sense with the lowered angle and the fact that I had had treatment for Renal Nutcracker Syndrome.  I was so glad because after over 2 years of pain an answer and it could be treated .  However bariatric team said not possible because I had GBS-RNY even though there was documented medical literature and videos of surgeries.  The next day due to rectal bleeding at night I had another endo with another ulcer but again no active bleeding site or clot.  I eventually agreed to Prevacid which I have continue to date but still have continued with multiple ulcers.  I left that practice when they said they had no help for the pain with eating and recurring ulcers even though GI MD said I needed a revision.  My GI Md followed me with endos and it took the ulcers from February to Sept. to heal.  I was still having serious nausea and pain and weight loss.  I was taking routine Zofran 8mg bid every day to help control nausea and Prevacid 30 mg bid. GI MD advised me to find a new bariatric doctor because he was concerned I could hemorrhage again from a perforation and not make it to a hospital.and pcp started process to have me go out of network to see my original surgeon who was practicing again in a neighboring state under an hour away.  In the mean time I was accepted into a large bariatric practice with a surgeon well known to my original surgeon. 

His first step was to do an endo and remove every foreign object in my anastomosis because it would continue to cause ulcers.  He found "tons of tiny ulcerations in my pouch and another ulcer in my jejunem.  He removed the only suture left the others had fallen out and thought I would get better. Stopped ASA for stroke prevention and no new anticoagulant still and continue Carafate suspension. In follow up he advised me to see my original surgeon because he knew me better than anyone else and would be the logical and best person to do any surgery if it was needed.  He wrote a letter to my insurance advising that was best for me.

I did get permission to see my surgeon and have been being treated by him since 2/18. My ulcers had healed with my first endo in march and he didn't see any new sutures though there was still a lot of inflammation. He was surprised with the excellent healing which actually surprised him after how bad my original ulcer was.  All of my ulcers have been in the jejunum and there was good mucosa not scar tissue. He took me off all my supplements etc leaving me on only necessary meds. to see if it improve.  We eventually stopped the Carafate due to nausea. Have been eating soft frequent feedings with increased protein by shakes.  He also reviewed all of my records from the time I was seeing other doctors in every specialty.   Because what he saw he did not want to rush into any revision surgery even though he knew how much I was struggling because of the seriousness of the procedure.  He wanted more time to follow me with endos and his dietary plan etc.  This has been hard because The pain and difficulty eating etc but I also understand his perspective. In April the inflammation was still there and a biopsy of a black area he suspects may be a new suture coming through came back positive for candida he didn't want to treat.  I am having an endo on the 24th this month and if there is another suture he will remove it and then we will decide where I want to go from here.  He does not want to leave me to suffer the rest of my life but he also doesn't want to cause me harm either which I appreciate.  I know he is looking out for me. Two plus months for him even though over 3 years for me.

However I am totally fed up with the pain, filling up after a few bites even though I am hungry and want to eat and lousy quality of life.  It is a struggle to keep my weight up and I will admit I am doing it by eating high carb foods after threatened by g-tube in the practice I left. I hate that because it is not a healthy practice but I am down to 121 and if I have surgery I know I will probably lose weight after. My surgeon said that if I have surgery there is no guarantee i won't keep having ulcers.  He suspects it is from the non absorbable sutures he was transitioning from at the time I had my surgery but it may not be. He said there is no way to just remove them so he recommended removing my pouch and connecting the jejunum to my esophagus.  I had wondered if I could be converted to a sleeve but he said no.  He told me that it is a big procedure and much more risky than my original bypass which I am fully aware of.  Both of the last two surgeons say that a reversal will probably not work and I am afraid of that because I was a diabetic and know that re-connection will probably reverse my remission.  Even though I have had these problems I do not regret my decision to have my gastric bypass.

It seems many people have had revisions but I don't know if they have had problems from migrating sutures and if it took care of the ulcers etc.  i just can't stand this any more!  Every swallow of even water is barely tolerable never mind food.  I just want to be back the way I was before my first ulcer but there are no guarantees.  If anyone has had this problem and would be willing to share I would appreciate it so much.  Also if you had a revision for ulcers that would be good to know.  I want to make my best decision based upon other's experiences, his experience and my options to be better.  If it is unlikely I could get better somehow I would have to try to find a way to live like this but that option brings me to tears.

As for the Wilkies Syndrome I can't get any movement in a bariatric doctor to believe it exists.  If anyone has had experience with this I would be appreciative knowing how it was handled.

Thank you and again I apologize for the length.

 

 

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@kmsbanr I have no relevant experience to share but just wanted to say I'm so sorry you've had to go through all this!  It sounds perfectly miserable.  I hope you're able to find some answers with your new/old surgeon and that you get some relief soon!  Hopefully others here will be able to give you some guidance, but if not, at least you should know you have our support and best wishes.  Please keep us posted!

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Thank you Kio I appreciate it very much.  I am tough but have pretty much reached my tolerance limit:(.

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I am so very sorry for everything that you have been through. There is no doubt in my mind how tough you are just from reading your story. Please don't apologize for the long post. Hopefully someone will read it and some of the details will ring a bell for them.

This sounds so very horrible and it amazes me that you have no regrets with the surgery. I am strong as well but still not sure I could be as strong as you are.

I wish you much luck in finding answers. Please continue to keep us updated. I will keep you in my thoughts.

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