Is my course of treatment for my leak the norm?

[tiffanylovesthebeach 6]

I was sleeved on 12/10/13 and went to the ER on 12/21/2013 with 103.2 fever, fast heart rate, dehydration, etc. During this visit, a contained leak was discovered. I had a NG tube placed and stayed in the hospital for 12 days, eventually transitioning over to a feeding tube.

I went home on the feeding tube and was re-imaged 8 days later. The swallow test showed the leak was healed, so my feeding tube was removed and I started on a liquid diet. Three days into the liquid diet, I started having intense left arm/shoulder/breast pain and knew something was wrong.

I went back to the ER and again, I was leaking and it was bigger this time. I went for an endoscopy to see if the leak could be clipped off or glued. The doctor was not able to locate the leak, stating it must be pin hole sized. I stayed in the hospital for 7 days and came home on a feeding tube and IV antibiotics through a PICC line. I have to continue this treatment for 4 weeks, then get re-tested.

The Surgeon says the next step, if this whole plan fails, is to insert a stent....... From what I have heard, this is not very comfortable.

If you have had a leak, would you please share your treatment course with me? I am wondering if the treatment I am undergoing is the norm.

Thanks in advance for all of your feedback.

Tiffany

[RJ'S/beginning 5,358]

It is very much the norm....I too had a leak and ended up in the hospital for 5 months with complications due to it....they first try to glue it and they will not let you take in any kind of food because it can infect the cleaned area..Has he got you on some antibiotics...

The stent is painful...I had 1 for 6 weeks and it did not work and then they added another one on top of that one and I waited 6 more weeks and that did not work...

Then they decided to use a clamp and see if they could close it that way...Nope they could not get the clamp down far enough to grab the leak...

Eventually they gave me a combo by pass and sleeve where they sewed my intestine to my hole so that it would not leak anymore.....

My situation was extreme..Most people heal easily with the stent....They will give you pain killers...It feels like you are full all the time and having indigestion pain all the time...It hurts....But they can give you nausea meds and pain killers to help you a long....just go with it...don't fight it...It needs to be fixed...k

[NORCALRN 60]

I was sleeved on 12/10/13 and went to the ER on 12/21/2013 with 103.2 fever, fast heart rate, dehydration, etc. During this visit, a contained leak was discovered. I had a NG tube placed and stayed in the hospital for 12 days, eventually transitioning over to a feeding tube.

I went home on the feeding tube and was re-imaged 8 days later. The swallow test showed the leak was healed, so my feeding tube was removed and I started on a liquid diet. Three days into the liquid diet, I started having intense left arm/shoulder/breast pain and knew something was wrong.

I went back to the ER and again, I was leaking and it was bigger this time. I went for an endoscopy to see if the leak could be clipped off or glued. The doctor was not able to locate the leak, stating it must be pin hole sized. I stayed in the hospital for 7 days and came home on a feeding tube and IV antibiotics through a PICC line. I have to continue this treatment for 4 weeks, then get re-tested.

The Surgeon says the next step, if this whole plan fails, is to insert a stent....... From what I have heard, this is not very comfortable.

If you have had a leak, would you please share your treatment course with me? I am wondering if the treatment I am undergoing is the norm.

Thanks in advance for all of your feedback.

Tiffany

It is very much the norm....I too had a leak and ended up in the hospital for 5 months with complications due to it....they first try to glue it and they will not let you take in any kind of food because it can infect the cleaned area..Has he got you on some antibiotics...

The stent is painful...I had 1 for 6 weeks and it did not work and then they added another one on top of that one and I waited 6 more weeks and that did not work...

Then they decided to use a clamp and see if they could close it that way...Nope they could not get the clamp down far enough to grab the leak...

Eventually they gave me a combo by pass and sleeve where they sewed my intestine to my hole so that it would not leak anymore.....

My situation was extreme..Most people heal easily with the stent....They will give you pain killers...It feels like you are full all the time and having indigestion pain all the time...It hurts....But they can give you nausea meds and pain killers to help you a long....just go with it...don't fight it...It needs to be fixed...k

hello there

I have been with complications since 8-2012. BUT most people do great. As far as your home treatment, instead of a PICC line, what about a feeding tube placed directly into your jejunum (intestine). leak or not, you need nutrients. A PICCl line is not the best for treatment t home. Do you have a home health nurse? That should be addressed. A stent is for strictures how many upper GI tests have you had? CTs? please ask questions... advocate for yourself. you always have an ombudsman on site who is specifically for mediating choices between patients and doctors and they generally have a lot to offer. Please post so we know how you are doing. hang in there. I have been there and still have a feeding tube although I am eating some food now. again --post please!!

[tiffanylovesthebeach 6]

I do have a NJ tube feeding into my jejunum. The PICC is for the IV abx.

I have had several upper GI's and CT's.

I am scheduled for repeat imaging on Feb 6th, so we'll see what comes of it.

Praying it heals soon.

Thanks for your feedback. I am sending warm thoughts and well wishes your way. It sounds like both of you have had very lengthy journeys. Thanks for your encouraging words.

[Truth&Gutz 20]

Oh My ! Wishing you both good health and recovery soon.......have you consulted with another bariatric surgeon ? You will get better--it just takes a little time....... has anyone ever felt pain and pins and needles at the bottom of the feet ? all the best........always....

[NORCALRN 60]

I do have a NJ tube feeding into my jejunum. The PICC is for the IV abx.

I have had several upper GI's and CT's.

I am scheduled for repeat imaging on Feb 6th, so we'll see what comes of it.

Praying it heals soon.

Thanks for your feedback. I am sending warm thoughts and well wishes your way. It sounds like both of you have had very lengthy journeys. Thanks for your encouraging words.

Hang in there. I had a NJ tube for 32 days until I was strong enough for surgery for the J tube/It sucks. I had a NG tube but pulled it out in the hospital ( bad patient as nurses tend to be)! I am so sorry that you have to go through this but it does get better. I got so tired of people telling me that, but it is true. It seems that you have everything under control regarding getting things done. I hope tests, etc show minimal issues. Heal rest breathe! Remember how strong and awesome you are!!!!!! please update us

Trish

Trish

[tiffanylovesthebeach 6]

Thanks for your words of encouragement Trish.

Over the last couple of days, I have been really battling hunger. I am not sure if it is physical hunger or just mentally wanting to eat again. Any suggestions that worked for you when you had the feeding tube and experienced the same?

[tiffanylovesthebeach 6]

Oh My ! Wishing you both good health and recovery soon.......have you consulted with another bariatric surgeon ? You will get better--it just takes a little time....... has anyone ever felt pain and pins and needles at the bottom of the feet ? all the best........always....

Never had the pins and needles feeling. At least I can be thankful for something.

[NORCALRN 60]

Thanks for your words of encouragement Trish.

Over the last couple of days, I have been really battling hunger. I am not sure if it is physical hunger or just mentally wanting to eat again. Any suggestions that worked for you when you had the feeding tube and experienced the same?

Well, with a NG tube, it is difficult to do much of anything. Does you doc have you resting your stomach so tube it is? what formula are you on? Ask about Jello, broth all things you were probably sick of before sleeved. Signs of hunger are likely a good sign. With a sticture, the chance of aspirating increases esp. with the tube in your stomach (not an issue with it your jejunum). Do you have a home health nurse? I wish your testing were this week. Can you call for cancellations or does you doc want this waiting period to see any improvement. I wish I had a magic answer for you. waiting is worst cuz it builds the anxiety. With my tube, I have to balance my oral intake and time on my pump. I think I need to back off on oral cuz my vomiting is getting worse and the nausea is too. I take Anzamet due to tehe Zofran not working for me. Oh, wha tis the rate of your NG tube feeding? I can only due 60ml/hour. Maybe ask about changing the rate. The best thing is asking about broth, etc.I hope your day is a good one.

Trish

[tiffanylovesthebeach 6]

Thanks for the encouraging words, Trish. I do have to stay npo until at least Feb. 11th. You are right, waiting this out is the hardest part.

Tiff

[robinson 2]

Reading these complications really scare me. I am scheduled for surgery March 3rd.

[RJ'S/beginning 5,358]

Reading these complications really scare me. I am scheduled for surgery March 3rd.

The stories on here is not intended to scare you more then it is to inform you that if you do not know that the possibility of complications are there. Then you cannot make a completely informed decision. We have survived our ordeals and working on getting our health back and our goals met....

Complications are a very small percent of the over all numbers. Death is too. But for me if I had known as much as I do now..I would still do it....i am so happy with my precious sleeve and how it has changed my life...I just wish I had more knowledge then I did going in.....

That is why we put these experiences here for you to read...k

[NORCALRN 60]

PLEASE let me know how things are progressing....just a few more days..you can do this!

trish

[tiffanylovesthebeach 6]

Update:

My CT and Gastrografin swallow showed no leak!!! However, there is still a persistent Fluid collection around the area of the former leak. The doctors feel like the Fluid is sterile, as I have been on antibiotics for a month, but they are still concerned about it. Side note: the collection is not drainable. They would have to go across my lung to get to it and say it is just too risky.

So, I still have the feeding tube and PICC line in until at least Tuesday, but my Interventional GI doc called me yesterday to give me the good news about the leak and tell me I could start on Clear liquids and discontinue the tube feeds.

I go see the GI doc and my infectious disease doc on Tuesday.

Taking in enough Clear Liquids is really hard, but I keep telling myself this is only Day one of drinking again after not drinking for over a month... RJ and Trish, what was it like for you once you could start drinking again? Was it hard for you? I definitely feel weaker and more tired since not being on tube feeds.

I will update everyone on Tuesday as to if I get this feeding tube and PICC out. They want to leave them in just in case I have problems again. Last time we thought the leak was healed, as soon as I transitioned from clears to full liquids, I started having the horrible chest/shoulder/arm pain and was leaking again, so... better safe than sorry if I have to go back into the hospital.

Thanks for your support!

Tiffany

[NORCALRN 60]

that is great news! with the liquids - go slow. 2 ounces at at time . i found it hard not to chug - i was ssoooo thirsty. but really take it slow. glad they left the picc in (hopefully you will not need it)!!!! i still drink too fast and get hot and nauseous but i cannot help it. Vitamin orange zero is my go to.water is still hard but i get a bit down each day.one thing, i did go to that catastrophic thinking anytime i felt weird, but that was just anxiety after being so sick. use your instincts...you know your body the best. i am so happy for you. what a relief it must be for you--looking forward to your updates

trish