Boyfriend's Leak

[sleeversGF 4]

I know it's been ages since I logged on or updated this, but now is a good time! My boyfriend had a heckuva time after my last post. He ended up back in the hospital after being home a month or so because of a PICC line infection and ended up staying a few weeks again. They decided to leave the PICC out and inserted a J-tube instead for easier, more manageable nourishment. He went home a few days before Halloween on the feeding tube and able to drink a few fluids here and there, and if my memory serves me, they removed the stents during this hospitalization. He did fine, tolerating the feedings pretty well, learning how to do a lot of it on his own and they allowed him to take all his meds by mouth, which was a huge relief for me. He started to get some self-esteem back, since he was able to manage more of his own care this way and feel more self-sufficient, even flushing his tube and adding cans to his bag each day. I even got a few days off from it, but never stopped visiting him. The weekend before Thanksgiving, he was feeling well enough to spend the night at my apartment, and hasn't left since. It's been great. The drain tube ended up getting yanked out over a period of two incidents-- one where he leaned out of his truck window to punch in the gate code at my apartment and he felt it really pull, and then 2 days later, he caught the tubing on his office chair and it was gone for good. The doc let it stay out since hardly anything was draining. J-tube pretty much the same way. He was eating small amounts and drinking plenty of fluids, and after a shower one morning, found the red J-tube laying on the floor by the commode.

Things went peachy ever since. He did have some residual drainage from the drain/ port site here and there. It would heal up for a week or so, then open up! We would hear it gurgling at 2am- so loudly it woke us up. He calls it Mt. Vesuvius, spewing unexpectedly after hearing some rumbly, hissing, bubbling sounds. He has had some issues with food intolerances, especially lactose, like straight milk and sour cream products, but cheese has always done him well. chicken, ground sirloin and cheese have been his main staples with a few carbs, like brown rice. etc on the side. He has done this since Thanksgiving without issue!

The past two nights, he started having increased weakness. Hard to stay awake and just tired. He has a shoulder injury that keeps him up some nights, so we both assumed he was just exhausted from not getting good nights of sleep the past few weeks. Last night, I put my hand on his neck and he was burning up. I fished around for a thermometer and his temp was pushing 103 degrees. He vomited most of the day, really just the "slimes" all day. He ate all day the day before without incident. Occasionally over the past few months, he doesn't recognize his full button and the excess would come back up, but nothing major, and we would move on with our day! Anyway, the temp hit last night full fledge. He had massive cold chills, shaking and shivering. I got phenergan and tylenol in him and his fever broke around 8pm and he was looking pretty dang perky. I poked around at that drain area and it was hard as a rock. I massaged it lightly, I heard it hiss, and tons of this goopy, brown drainage sufaced. Nasty stuff. His usual drainage was this lighter green/ yellow color, thin and watery usually. Not this. This was bad. He cancelled his endoscopy that was scheduled for yesterday, because he'd been feeling an increase in restriction when foods were going down. The surgeon said he had developed a gastric polyp, so we figured that was the reason for the restriction because the polyp (growth) had formed over the scar tissue from his leak at the esophagus/ stomach meeting juncture.

This morning, he called his surgeon with his symptoms, who told him to go to ER. Go there. CT scan. Definite abscess. They said they're pretty sure he has a contained leak, but I'm questioning it. He didn't show symptoms of that until yesterday. I am still crossing my fingers we are treating an abscess that never went away, not a leak too. I'm probably wrong, but I have to have some wishful thinking here.

Quick rundown:

His original surgery: Band to sleeve was June 21 last year. Began having symptoms a week into July. Hospitalized around the 13th of July, that weekend. And hospitalized with official leak July 29th for 5 1/2 weeks, then again end of September, first of October for around 3 weeks and got out a few days before Halloween. Here we go again!!! Prayers are so, so welcome right now.

[Indymom 132]

Ugh, what a rough time he's had (and you too!). You're a wonderful person for sticking by him through all this. I'll definitely keep the two of you in my thoughts. Hang in there!

[peacequeen 434]

Compared to your boyfriend, I shouldn't complain about my leak. My gosh he's been through it all and then some. I am so sorry for all that you both are going through. I'll keep you in my thoughts and prayers.

[christin 54]

I am speechless after reading this whole thread. I am so sorry that both of you have gone through all this. What a mess. I really hope this stops very soon for him. It must be so frustrating!

[Shells 40]

My god darling, my prayers are with you and I wish you both fast healing and strength. You are amazing, I wish your bf a safe, quick recovery. *hugs*

[sleeversGF 4]

Thank you all for the kind words! It just feels like so much uncertainty and that's the hardest part of going through complications. I knew something was wrong yesterday. I am sure I worried him with my tearful worry all day, but I knew it was more than that drain site draining causing his symptoms and "leak" kept coming out of my mouth. Part of me knew it was back/ still there or whatever you want to call it, but it is what it is. I just hope he heals. And if this area doesn't heal that there are other options to maintain a normal life at some point in our future... our future has wedding bells and a home we are trying to buy right now. This is just terrible timing, but I believe the Maker knows what He is doing for those who believe.

Peacequeen, don't ever compare! Leaks, complications, strictures, infections-- it doesn't matter. It is all scary and all bringing health into dark territory.

My BF told me 3 times today that he wished he hadn't done it. He said he should have tried working harder at it and doing it the "proper" way. But the band didn't work, and he loves food. Loves it. How do you leave something you love so much? So he felt he should have tried us losing weight together before doing the sleeve and regrets that all over again. But...

When we talked on the phone tonight? He said he had been thinking since I left him at the hospital at suppertime-- he did it to get rid of the diabetes, the high cholesterol and the high blood pressure and the horrid back pain he experienced. He did it to improve his health. He has lost about 95# if I'm not mistaken and is sitting around 210# this afternoon. That is something! I told him I didn't want him to ever regret wanting to be a better, healthier person, regardless of where this road takes us. I promised him before his sleeve surgery that I would never say "I told you so" no matter what happened. And I never have (and never will), even through the frustration and sadness and scaryness of all we have gone through. This too shall pass. And we can turn thoughts of "I told you so" into "I DO"s.

[Dooter 1,457]

Praying for you now. His ear is open to our cry. Please post a wedding pic when the time comes! This will all be a distant memory once and for all...

[Capt Derel 287]

Who did the surgery?

(null)

[complex 0]

Hey You! You know I'm thinking of you both. Keeping you in my thoughts all day today. Keep me posted. Sorry that you all are going through this again. Give him my best and my hubby wants me to say that he's praying for you as a caregiver. His walk wasn't as long, but his been in your shoes. Love <3

[ummsantos 4]

Hello. I am sorry to hear about your bf troubles. My hubby has been hospitalized since June 3rd for a leak, infection, abcess, and pneumonia. He is now about to get two stents put in after the first one migrated. He has been npo for 90% percent of the time. How is your bf now?

[Mrs.FullerRN 189]

Can they give him phenergan instead for the vomiting?

[sleeversGF 4]

Hey everyone. I haven't been here in ages, especially to this thread. BF is now fiance and we built ourselves a home that we moved into a year ago. He healed up pretty well (or so we thought) in May of 2012. His PICC line was discontinued and he had been fairly healthy for th last year or so. He kept having respiratory infections off and on for over a year. He's had some abdominal pain, and constant shoulder pain that hasn't gone away with any kind of treatment-- narcotic, nerve meds, etc... turns out we learned why this August of 2013.

He had a respiratory infection again (about the 12th one in the past year and a half), and the antibiotics didn't do the trick. I took him to the ER about 3am in the middle of August with severe chills and fever, coughing up some nasties. He had septic pneumonia with kidney failure. After CT scans and huge amounts of antibiotics, he cleared up after two weeks in the hospital. That isn't after finding out that he still has a leak. The surgeon (not the one who did the original revision-- band to sleeve) said he had a self-contained leak that was affecting the abdomen and probably touching the lung wall (thus all the respiratory infections). He and a thoracic surgeon consulted with us, saying that something had to be done. After 2.5 years, this leak has still persisted, though staying in one spot and not growing. It was affecting the spleen. Their suggestion was a total gastrectomy, spleenectomy and partial esophagectomy (since the leak was in the stomach/ esophagus juncture and the leak was damaging the spleen).

They referred us to the thoracic surgeon's mentor in San Antonio, a cardiothoracic surgeon who does transplants, etc... He knew he could get the job done and do it well. After another 2 day stay in the hospital, my fiance is now 2 hours away after having had surgery this Tuesday. Luckily, he saved the spleen. He found multiple adhesions, two abscesses in the abdominal cavity and a leak so large he could stick his entire (chubby) index finger in the hole in his stomach. He removed several inches of his esophagus, removed the stomach, and 4-6 inches of his small bowel and reconnected him with an RNY connection. The surgery took six hours, and he had a j-tube placed for nutrition while he heals.

All looks well today. Several x-rays of the connection have been taken with the gastrografen, and he's started on Clear liquids today. Tomorrow they will do a swallow study and let him progress with his diet. After 2.5 years, this might have finally been the answer we've needed. We're still a little worried, after everything he (we) has been through. Leaks shouldn't resurface after 2 years. But his never healed.

It hasn't been a fun road, but it's been one that has brought us closer together in ways we never dreamed. For that, I'll never wish it hadn't happened. But after these years, this should have been an old nightmare that is now hard to recall. Not the case.

I know lots of you come on here wondering about revisions and whether to have this surgery. Searching for "leak" like I did before he did this.

A year ago, he was glad for all that he gained (lots of weight lost, losing the high blood pressure and diabetes diagnoses), but today... and yesterday, he wished he hadn't done it. My only wish is that that original surgeon had removed the band and closed him back up-- telling him he needed some healing before doing the revision. This story might have gone a lot differently if he had. He would have been disappointed, but we might not be back in the hospital again.

My wish for you all-- ask those questions before you make the decision for a revision. Ask what your surgeon will do if your band caused lots of scarring inside of you. Even better. Use a surgeon who won't do it all at once. You don't want your story to be this one if you could have made different choices.

Happy outcomes to you all! And I'm here if you guys ever have questions! It wasn't my surgery, but it was what I have lived since June 2011.

[Texasz 1]

What is the name of the surgeon who did the revision?

[Sleeved&Hopeful 182]

Bless both of you for what you have been through! So happy he has found out exactly what was wrong and that this surgery may have saved his life and saved BOTH of yours quality of life for the future! I am so very happy to hear you both are together and making a life. You are someone who stuck by him at the worst of times. I am sure he will never forget that!That is what commitment is all about! Best wishes to both of you and to a happy and healthy life together