gastric bleed x 4

i have a rny from 2001 which had been o****il 2009 when i had the first gastric bleed. Week in the hospital, IV Protonix upper GI, Pillcam and 4 units of blood and they were unable to discover the source of the bleed. Forward to 3rd quarter 2016 another gastric bleed this time stopped on its own but requiring iron infusions x 8 for severe anemia. Spring of 2017 another gastric bleed, week in the hospital, another 4 units of blood, upper GI, Pill cam and double balloon gastroscopy, still no source of bleed. Summer 2018 another week in the hospital, 5 units of blood , upper GI Pillcam, Double balloon gastroscopy. This time they found and cauterized a single bleed point in the excluded stomach and released me into the wild. I desperately want this old excluded stomach removed before it gets another chance to kill me. The previous incidents came without warning, no pain, just collapse on the floor and boom in the hospital needing someone elses blood to live. The RNY was performed because my reflux was no longer being controlled by PPI meds even when combined and doubled. The bleeds happened while on Dexilent with Pepcid twice a day.

Anyone here had the rny old stomach removed or revised to a bpd or ds? I have an appt with a surgeon to see about a revision later this month.

are you using any NSAIDS? We are not suppose to take any, ever. Not orally, not in a patch or topical cream/gel.

My stomach is very sensitive and even one pill can cause irritation.

Never no aspirin no nsaids dont drink or smoke

I've had a similar issue... RNY in 2014 and had my first GI bleed from an ulcer in March 2017, second in October 2017, and recently had my 3rd bleed on June 1st 2018- each time about a week in the hospital. Lots of pain from ulcers at times. This last time was very scary.. my family had to call 911 because I kept passing out. EMT found me half on my bed, they couldn't get my blood pressure in the ambulance- once at the ER it was 80/40. Anemia...Lots of blood transfusions, iron IVs, Carafate, endoscopies, balloon endoscopies, colonoscopy, and the capsule cam (which did find one bleed!) Also I take a prescribed acid reducer. My ulcers have usually been on the incision from my RNY, only one was a little further in my intestine.

I've never regained the weight I lost (130lbs) I haven't taken aspirin, or Advil, I eat a very healthy diet...my surgeon has always said I'm his poster patient. I started having these bleeds after having my gallbladder removed in 2016. I see two of the best GI doctors and they have no explanation of why this keeps happening- except to blame the rny, which I understand and knew this could be an issue before I had my RNY. Today I spoke with my GI dr about having a revision and we decided I need to see my dr who did my RNY. I'll see him Monday and hopefully have some answers, and if I need a revision I'll do it ASAP. I will say through all this I would still do the RNY in a heartbeat. Has anyone had a revision due to bleeding ulcers without weight gain? Or going through this same ordeal?

I know diet will have a lot to do with healing and I've been doing a lot of reading about organic bone broth. I've started drinking it 2 times a day. Supposed to be soothing, healing for GI bleeds.. also good for you in general!

Sorry to hear you are having a similar issue. We are not alone with this complication, as I have known several that have had to have the old stomach removed for this very issue. The Drs do not like to admit it as a possible outcome since it is viewed as very rare.

The first upper GI in 2009 managed to dilate my stoma and weight gain has been slow and steady since for me since then, went from 140 up to 184 current on 5/3 frame Understand about the BP issue as mine normal is only 90/60 pulse 65 or so. They can blame the RNY but i think it is more personal biology, some folks are just prone to ulcers.

This would all be much simpler to manage with just about any of the other surgeries other than RNY. That retained unused stomach requires special tools to look at when something goes off. I want a revision to BPD/Duodenal switch.

Have you checked that your old surgeon does revisions yet? Not all of them are competent or willing.

Luckily I was aware all these issues could happen before I had my RNY. I do have a history of a more acidic stomach.. family history of it too. I think it has a lot to do with that and not having a gallbladder. I didn?t have any issues before when I still had my gallbladder. Also, stress. When I had my first ulcer I was under unbelieveable stress. Once you have an ulcer it?s hard to heal and prevent them from returning. Yes, my doctor does to revisions. And he's an amazing dr.. this has nothing to do with how he did my surgery.. it's my bodies biology. He?s concerned about me and that?s how I was able to get an appt for Monday morning- I just called on Friday. I?m not sure what all my options are yet, but I?m willing to go back under and have a revision to stop these bleeds from happening. Does it take you a long time to recover from the GI bleeds..I?m so weak and lethargic for weeks/ months after. Also. Not sure why my weight tracker says I?m still losing weight.. Im at 138 so I?ve reached my goal long ago.

I had the good luck to be sent to a gastric bypass sympathetic Hematologist close by in 2016. He handled the aftermath of 3 bleeds and now monitors my iron/ferrtin/hemoglobin levels and has a standing set of orders for injectafer for me on file. At this last bleed i called his office and gave them my last set of bloodwork and they set me up for an infusion of iron to bring my numbers back up. Had the infusion on Thursday and already feeling a good bit better but still weak but no where near as dizzy on movement, it usually takes a week to get over the infusion itself and back to somewhat normal in a couple of weeks. RNY folks have problems absorbing iron from their foods anyway and having this bleeding issue really puts one in a serious state. Ask for a referral to a Hematologist. My gallbladder was removed in 95 and rny was done in 2001, first bleed 2009. The Dr that did my rny surgery has moved to another city and is still on the table for possible fall back if this other practice cannot come up with an acceptable plan. He is generally an excellent surgeon but over a 100 miles away now and old enough to be retiring in a couple of years. The first set of guys under consideration are all in the 30-40s and say they do revisions even the duodenal switch. Have an appt on the 26th for a face to face

Are you getting transfusions or iron infusions when you have a bleed episode? Let me know what you Dr has planned

Ohh yes I have a hematologist too! A wonderful one too.. I?ve had a couple. Finally found one I really like! I have iron infusions, usually once or twice a year. I haven?t needed one yet as my levels are just below normal right now, and hoping they come up on their own. My dr who did my RNY is younger.. in his 40?s. He?s amazing, and has a wing at the hospital for his bariatric patients. Patrick Domkowski. I?m in Vero Beach, Florida and luckily we have great doctors around here. I?ll keep you posted on what they say tomorrow! I?m still weak, and some pain from my ulcer when I?m up for too long. Def listening to my body right now so I dont overdo anything! Oh and drinking bone broth.. I think that will help so much! But if I need surgery, I want it done ASAP! Oh I had my gallbladder removed in 2016. I miss it? can't have certain veggies any more which I loved.

Do they have you on reflux meds? I am on 60 mg of dexilent and 20 mg of pepcid x2 daily. The dexilent has warnings on it that it increases malabsorption of vitamins and minerals. Would really like to get off that one.

Yes, I've been on prescription reflux meds and have just added Pepcid two times a day as well, also Carafate liquid. It's not worth going off the dexilent.. I've talked to a couple different hematologist and my gastric Drs agree the amount of malabsorption caused by the drug isn't enough to make a big difference. Actually, one of my old drs took me off reflux meds because they thought it was why I couldn't absorb iron- when I'll need iron infusions for the rest of my life because I can't absorb enough iron from food or pills- regardless of reflux meds. 2 weeks later I was in the hospital with a GI bleed. Saw my gastric dr today and he wants to do a endoscopy on me in 3 weeks to check if the ulcer has healed, and to check everything out from a bariatric standpoint. My drs. are thinking I'll need to do a revision but want to check everything out before going under for surgery. So at least the ball is rolling. Just wish things could move along faster. When do you see your dr?