Leak still NOT healed

[Stacie 1]

Hi everyone, I haven't posted much since my leak. I am just getting so frustrated. I had an upper GI two weeks ago and it was still there, the surgeon advanced my drain an inch, hoping that would help the leak heal up. Went back today for another Upper GI and it is still there. I am so completely ready to lose my mind. What can I do? How long will this take? There just isn't a place for me. I definitely can't relate to anyone who had surgery in Dec.

ETA: I am hardly believe it has been over 2 months since I have taken a bite of food. 2 months without chewing a single morsel. I" am not sure when I am healed if I will be afraid of food or if I will eat everything in sight!!

Other crummy things:

I still have loose stools, so I don't know if my c-diff is back or never left

and

I still have tons of nausea. I take liquid zophran through my J-tube for it, but it gives me a headache every time.

I don't even know what to say. I am just falling apart. I don't see why they open my stomach back up and attach a stomach from someone else having this surgery. It would just be two staple lines. Kinda joking - I just want my life back so badly.

Thanks for listening. I know many of you have been thinking of me and praying for me and it means so much, sorry taht I am very rarely up for much conversation. =(

Edited February 22, 2010 by Stacie

[filodough 1]

So sorry to hear this Stacie. I don't have any advice to offer, but I will whisper a prayer that it gets better.

[thinoneday 445]

Hi everyone, I haven't posted much since my leak. I am just getting so frustrated. I had an upper GI two weeks ago and it was still there, the surgeon advanced my drain an inch, hoping that would help the leak heal up. Went back today and it is still there. I am so completely ready to lose my mind. What can I do? How long will this take?

I still have loose stools, so I don't know if my c-diff is back or never left

and

I still have tons of nausea. I take liquid zophran through my J-tube for it, but it gives me a headache every time.

I don't even know what to say. I am just falling apart. I don't see why they open my stomach back up and attach a stomach from someone else having this surgery. It would just be two staple lines. Kinda joking - I just want my life back so badly.

Thanks for listening. I know many of you have been thinking of me and praying for me and it means so much, sorry taht I am very rarely up for much conversation. =(

Thats ok stacie, we understand, i wouldn't want to talk either if i was in your postion. . .i'm so sorry this is happening to you . . . hopefully they will be able to resolve this problem soon. . . i'm just amazed that they haven't fixed it yet. . . that blows my mind. . . have you had this leak since day 1 or did it just happen after? Again, i'm sorry this is happening and hopefully it'll soon be ok and you can have your life back. . . hang in there. . .

[Lee 19]

Stacie, I wanted to send you hugs. I'm so sorry you're going through this. I can so understand your frustration with the healing process. I hope that things improve very soon. Please keep coming here, even if just to get hugs from all of us.

[Tiffykins 672]

I really don't understand how some surgeons treat leaks. It kind of blows my mind. I had a second surgery to fix mine, and they did buttressing and mattress sutures to fix it. I did have to go home on a TPN line for nutrients for a little over 2 weeks with drains, but hearing of these extensive healing times for leaks makes me shake my head. I'm so sorry that you are having to endure all of this. I know it's so draining emotionally, mentally, and physically. We're all here for you, and praying for a full recovery.

[Stacie 1]

My surgeon is supposed to be calling me soon. I want to ask him some specific questions, any you guys can think of?

1. I took vancocin capsules for three weeks. Maybe these kept it open? They are big

2. I am drinking about 15 ounces of Water each day, could this be keeping the leak from healing?

3. He did try to fix it during an EGD with a patch of glue mixed with my blood.

It seemed to do the trick for about 5 days. Maybe we could try that again?

What would you ask?

I agree with you Tif, it is such a mess, I sure wish they could have fixed it right away, that was their plan/goal. But maybe it is different because my leak wasn't found for over 2 weeks. So I was enjoying pudding, broth, Protein shakes,etc. When they went in for emergency surgery they were most concerned aobut the massive infection in my abdomen and making sure I lived. They were unable to locate the leak at that time (2 top surgeons in the room). But it seems crazy that it still isn't healed. I don't have diabetes, smoke, overall very healthy (except this darn weight). Ugh! Thanks for all your prayers everyone.

Edited February 22, 2010 by Stacie

[MINI-Me 196]

Stacie - please let us know what your surgeon says. We are all very concerned for you. Prayers are going up.

[Barbara278 9]

Stacie, I'm so sorry things aren't going well for you. I don't really know what to say but I know from your words that your are hurting emotionally. I beleive very strongly in the power of prayer, so you can count on me to be praying for your healing and recovery every day. Please keep up posted on how you are doing.

[Tiffykins 672]

My surgeon is supposed to be calling me soon. I want to ask him some specific questions, any you guys can think of?

1. I took vancocin capsules for three weeks. Maybe these kept it open? They are big

2. I am drinking about 15 ounces of Water each day, could this be keeping the leak from healing?

3. He did try to fix it during an EGD with a patch of glue mixed with my blood.

It seemed to do the trick for about 5 days. Maybe we could try that again?

What would you ask?

I agree with you Tif, it is such a mess, I sure wish they could have fixed it right away, that was their plan/goal. But maybe it is different because my leak wasn't found for over 2 weeks. So I was enjoying pudding, broth, Protein shakes,etc. When they went in for emergency surgery they were most concerned aobut the massive infection in my abdomen and making sure I lived. They were unable to locate the leak at that time (2 top surgeons in the room). But it seems crazy that it still isn't healed. I don't have diabetes, smoke, overall very healthy (except this darn weight). Ugh! Thanks for all your prayers everyone.

I was completely forbidden to eat or drink anything for 22 days to ensure my repaired leak hole stayed closed. I wasn't even allowed to use mouthwash, and couldn't use Water to brush my teeth. Only enough to wet the toothbrush. They were super paranoid about anything going down my esophagus. The TPN nutrient bag saved me from being dehydrated and malnourished. I had a "pic" line (central line catheter) in my left arm that fed directly across my collarbone (some big artery in there), and then into my heart. I was on that for over 2 weeks. It wasn't pleasant, but it got my stomach healed. I had to add medication (insulin) and certain supplements/vitamins to the bag every day. Even though I wasn't diabetic they had to add insulin. It was chalked full of 1800 calories per day, and I changed the bag daily. I had an in-home healthcare nurse stop in every three days to change my dressing because it's tough to do with one hand, and my husband was deployed and I didn't have anyone to come over and help me during that recovery time period.

I had a ct scan with gastrographin contrast Fluid after 22 days, the leak was completely healed, and then my surgeon put me on clears for 17 days. I had to wean off the TPN bag for 2 days before I could have the catheter removed from my arm.

Did they put a stent in there to help heal it? I've read a couple of people who had this procedure done, and I couldn't find any information on the net about why this done or how it's supposed to help, but a couple of patients that had stents placed had longer recoveries than I did.

I would ask about going on TPN. I think anything going in is going to irritate the leak, and slow healing. I can honestly tell you I never got thirsty or hungry on TPN. I wanted to drink, but I wasn't willing to risk another leak at that point. I was my surgeon's very first leak. He called a surgeon out of Florida State University to get his opinion on repairing my leak. They almost put in a stent, but after reading leak patients ordeal with those things, I'm so grateful they opted to suture up the leak, and put me on TPN. Like I said, it isn't pleasant having that line in my arm, but it saved me. I bought one of those baby umbrella stroller, and my bag of fluids, iv pump came in a backpack that I laid in the stroller, and pushed around my house, driveway and patio. I even took it to Wal-Mart just so I could get out of the house and walk a little more.

My heart breaks for you because I know how tiring it is. We're all here for you, and please keep us posted.

[LAN2k 18]

Stacie I am so sorry and I too will be praying for you.

[educationrulz 18]

Stacie,

First I want to say that I too am sorry to hear about what you're going through. We're all praying for you to recover soon.

I also would like to piggyback on what Tiff said about not taking in any food or fluids while healing from a leak. That seems pretty reasonable to me and I guess the TPN is what makes it possible.

Do you have to option to get a second opinion on this? I imagine if you're self pay that may not be possible. I don't mean to suggest that there's something wrong with your doctor, but you do need to start seeing some results soon if for no other reason than your emotional health.

I think another important thing is to have someone who can be a strong advocate for you during you doctor visits. The truth of the matter is that when we're sick it's hard to speak up for yourself the way you normally would. I know this from first hand experience. During a bad experience in a hospital once, I had to call my sister and have her make some calls for me (she was out of town) because I was too emotionally fragile to say what needed to be said and to make myself heard. This is SOOO NOT like my normal self.

If you don't have someone in your immediate family, you could try getting a friend or trusted co-worker to do some research on this issue, including the info posted by Tiff, and then start interacting directly with your doctor on your behalf.

You may already be doing these things but I just wanted to throw it out there. I hope nothing I said was offensive - just hoping to be helpful.

[Stacie 1]

Thanks so much everyone. And thanks to Tiffy for all that info. I am going in this afternoon to have my drain advanced again. I was on tpn at the hospital for the first week. Then they put in a feeding tube (directly into my small intensines) I didn't drink anything in the hospital, but I asked him again yesterday and he thought I should continue with the Water. I will ask again today. I have only drank Water, nothing else by mouth, though I do brush my teeth. =)

Thanks again for your good thoughts and all your ideas for my to think thru. I wish I had more of an advocate. I just can't wait til this is over!

[alegna242 1]

I really have no advice, but I just wanted to say I am sorry for everything you are going through and best wishes on recovery.

[Kabranda 0]

Stacie - I'm so sorry for what you are going though. Your posting about you leak is freaking me out as my surgery is this Wed 3/3. My Dr has not had a leak with the sleeve and only 7 with 2500 bypass surgeries so I'm hoping I'm not his 1st sleeve leak!!

Did you Dr. test for a leak during surgery (before he closed) or later? How did he test? I'm curious because my Dr said he clipped off below the stomach and applied pressure on the esophagus and did air testing using more pressure than any cough I would have. I had not found this type of testing mentioned on the boards so I thought I would asked about you leak testing.

Hang in there and best of luck.

[cajun 46]

Thanks so much everyone. And thanks to Tiffy for all that info. I am going in this afternoon to have my drain advanced again. I was on tpn at the hospital for the first week. Then they put in a feeding tube (directly into my small intensines) I didn't drink anything in the hospital, but I asked him again yesterday and he thought I should continue with the Water. I will ask again today. I have only drank Water, nothing else by mouth, though I do brush my teeth. =)

Thanks again for your good thoughts and all your ideas for my to think thru. I wish I had more of an advocate. I just can't wait til this is over!

Stacy,

I would think, like Tiff said, drinking water, or anything, could keep the leak open. I would think that NOTHING should be going down the esophagus into the stomach. Why not put your water directly into the tube, that goes to your intestine? I would ask the doctor about that.

See my PM to you.

I am praying for your quick recovery.