I had a small leak. now all hell has broken loose

[RJ'S/beginning 5,357]

Drs are joining small intestine to oseophugus

Most of your digestion is done in the small intestine anyway. Your stomach is a pouch that holds your food and starts the breaking down process by adding acid to it. You can live easily without a stomach if need be. Not good to hear but true.....

my son's friend who is a doctor said that you can still eat without a stomach, but you have to eat little bits every few hours. is this true? when i went in for the emergency surgery the doctor said he might have to remove my stomach. he didn't, but he said it wouldn't be very bad if he did.

rj thank you for the advice. i'm so sorry that you had complications with the sepsis, and i hope you heal completely soon. i feel like this isn't going to work. this stenting, but i have also seen it work in so many other posts for other people. the stent doctor was very positive as he said my leak edges were 'raw' in a way that would heal. like they didn't form edges that were healed so they could still stick together if that makes sense. that's pretty incredible considering it's been six months since surgery!

it's hella hard not to gag myself. i have to admit yesterday i didn't, but today i did about 5x which is a huge improvement from the norm (i was gagging over 20x a day). i was able to drink the broth from wonton Soup and have some iced tea. drinking really helps with my strength. when i just rely on the j tube i feel dizzy and weak. drinking very cold or warm beverages has helped me feel so much better which gives me a much better attitude. my doctor said i was okay to drink. i do take a med that needs food taken with it so i usually nibble on a arrowroot cookie. i'm just taking the tylenol.

whether its taken out in 4 weeks or six. yes it hurts but i gotta do this. i cant just give up cuz i will only end up in the hospital again with more abcesses. those hurt and are awful. the drains suck.

I have 12 tubes in a circle around my stomach and it was really painful. Every day they changed to bandages as it would break through and the poison would ooze. One by one they healed and the tubes were removed and I celebrated each one as if it were a massive achievement..lol. I was later allowed to eat with the stents but the food would find its way into the sacks that held the infection and then they would know that yup that didn't work either. There were days when i just closed down and would not talk to anyone. i felt helpless and raw. I could not walk or even get up. Not to mention the incredible pain of the bed sore. But I kept on trucking most of the time and really started to appreciate most of the staff.

I came hone after 5 1/2 months with nursing care for the holes in my chest.

They were feeding me Protein drinks several times a day and finally i could not swallow one more. Then they talked me into yogurt and I went for that until I discovered they put Protein powder in that. Oh my favorite was mac and cheese. It stuck together in a big lump and I could not even pull it apart....lol. that did not go well.

One thing for sure Ana is that you still have options if the stent does not work. It is not over you know. For me the tissue kept dying around the staples. So they finally had one last option. Attach the intestine to the leak and it worked......

I gagged too. a lot but never forced myself and faced it head on.....They got so used to me throwing up that sometimes they did not even come to help me......I was really ready to go but still needed to learn to walk and stand and eat and go to the potty by myself.....It was a long time i spent a lone in that hospital with no friends to support me. It devastated me to the core.

Your doing great kid...Keep up the happy face it helps you heal faster okay!

[AnaBanana 63]

my goodness you have been through so much! it sure makes a person stronger doesn't it? i read so many stories before surgery of people who had leaks and i never thought i could deal with one and here i am. it's amazing how resilient we can be isn't it?

my stent doc called today and he has given me a prescription for a stronger anti nauseant (zofran?) and amitriptyline. apparently that will help with the pain. not sure if it will. he said he doesn't want me to have this stent when i feel so much pain and that if that prescription doesn't work he'll take it out next week. i'm booked for removal next friday but he doesn't want me to suffer. it's kind of a catch 22. yeah the stent will be out but will it have been long enough? i've been in contact with dr. aceves in Mexico and he wants me to just stay on the jtube with nothing by mouth if the leak hasn't healed. he isn't happy with their ideas of gluing and clipping the stomach. he said it's best to let it rest and heal on it's own and the jtube can stay in for a long time so if it takes a few months then so be it. i do agree. i don't like the idea of clips or other weird things wrecking the tissue.

rj i feel you about not having much support. i don't either. i feel really alone and depressed. although each day that gets closer to this removal is making me feel better. i'm really hoping after the stents removed i am healed and will feel 'normal' but i also know that i do have some eating issues (foaming a lot and vomiting) i had that before all this happened, unless that's part of having a leak.

i'm so glad i can vent here!~

you guys are

[RJ'S/beginning 5,357]

Yes it has been quite a trip...lol

But I know more about who I am and who I can depend on as well. And since I almost died I have no time for crap from any of the so called friends I had...

The pain meds should help a lot. Try to stick with it Ana. The longer it is in the better chance you have of it healing over. Foaming and throwing up while that was going on I think I invented it!!!LOL

I am so hoping that this will be the end of it for you and you will be on your way to a happier healthier you!

Keep me posted...K

[Flutterfly19 15]

Omg....I have been considering this procedure but holy hell, this sounds horrible! What are the odds that something like what you guys have experienced will happen?

[carstanger 346]

Sorry to see that you are in pain and feeling down. You can vent on here any time.... Praying for healing for you!

[RJ'S/beginning 5,357]

Omg....I have been considering this procedure but holy hell, this sounds horrible! What are the odds that something like what you guys have experienced will happen?

Complications do happen but usually they are not as extreme as Ana and I have gone through. there is always a possibility of complications. But they are not common at all.

When I went to my last appointment before my surgery my surgeon wanted me to know that I could die from this surgery because every surgery is a risk. Having your teeth removed is a risk.

Since i was not living before I did not see the need to worry about it. Even when I almost did die. I felt the step was the right one for me because if I did live it would give me a chance to really live and that was what I wanted most of all. It is good to weigh the pros and cons regarding this surgery. Be sure you are willing to take the risks...

You may and probably will be one that sails right through it. But me, I have no regrets about it at all. As far as the surgery and complications went. the changes in my life were the scariest for me....They still hurt quite a bit and I still cry about my so called friends....But I am moving forward and actually loving all the NSV I experience......

I think even though for me it was good, bad and ugly. I would do it again! I mean that too.....I am a live now I was not before the surgery...Too much pain. Could not walk far. Lower back issues. High blood pressure. and so on!

[AnaBanana 63]

rj thank you for the kind words. it means a lot to me, all of you who have given me support through this. i keep reading this thread over and over and it makes me feel so much better.

i went to the hospital tonight and wrangled a morphine prescription from the doctor on call. he truly felt sorry for me. i said 'the doctors are telling me i should not have pain but i do! and it hurts and i'm breaking down!'. he said 'of course you are going to have pain it's not natural to have a metal tube in your body like this!'. he was awesome and prescribed me 20 morphine pills. even though they don't get rid of the pain completely, they kind of relax me and take the edge off. the pain is getting definitely worse. im not sure if the stent has migrated or my gagging is just making it worse, but i think i was having spasms tonight. i have a prescription for an antispasmodic and took it as soon as i got home.

you know the pain isn't the 'worst' i've ever had, i think it's a combo of pain and my body freaking because of a foreign object and stress from having it in and the leak itself that makes it so bad and so unbearable.

flutterfly it does sound terrible, but i think you should not be afraid. i was fully prepared to accept that i might have a complication and i still took the chance. you know what though? i've lost almost 100lbs. in six months. which is probably too much really, but my labs are actually good, i dont have any deficiencies and as long as you are aware of any symptoms of leaks you should be good whether you have no complications or have complications. it took me two years to research this surgery and i chose my dr. for his expertise. he has a pretty good rep and i don't blame him at all for this. i would still go to him again. he keeps in touch and his office has been more than wonderful, even offering to fly me out for free to get fixed. i didn't take them up on that offer as i wanted to stay closer to home and trusted my doctors here, but if you get surgery just make sure you have a good doctor. even the best docs have screw ups. i was the lottery winner for that time. all the girls i met at the hospital are doing great. and i'm happy for them.

i think everything has a purpose and i guess me having a leak was for a reason that i don't understand yet, but maybe i had to get one to learn something. even if it was just to break out of my shell and come to a forum and reach out to strangers who have shown me that i'm worth rooting for. i'm a lonely person and i'm so grateful for any support.

again i love you all! you rock!

[AnaBanana 63]

ince i was not living before I did not see the need to worry about it. Even when I almost did die. I felt the step was the right one for me because if I did live it would give me a chance to really live and that was what I wanted most of all. It is good to weigh the pros and cons regarding this surgery. Be sure you are willing to take the risks...

........

I think even though for me it was good, bad and ugly. I would do it again! I mean that too.....I am a live now I was not before the surgery...Too much pain. Could not walk far. Lower back issues. High blood pressure. and so on!

this is so true. i wasn't your weight, but even at 250 my body was breaking down. i couldn't wipe my butt. i smelled funny from all the folds i couldn't reach to clean. i was out of breath from talking. i waddled. take a look at my before pix. i was a bloated mess. i felt like crap. a single woman age 42. where was my life going? downhill. i kept gaining weight, i had thyroid problems and bad anxiety. i thought i was going to die any minute. now? this leak is temporary, and when it's healed, like rj, i will be free, i feel like a butterfly, not quite out of her cocoon... ready to fly. maybe by spring? maybe this summer i will hike and walk and swim and go out in public and buy a beautiful dress without feeling ashamed of my body.

no maybes. it will happen.

[RJ'S/beginning 5,357]

Ana..I had one stent in for 6 weeks and then they placed another one in on top of that one for 6 weeks. 12 weeks of feeling horrible. it bothered me but not enough for me to lose it or beg for mercy. there are still a few things they can do if it does not heal.....your probably going to have a healed seal...At least I hope so!

[RJ'S/beginning 5,357]

ince i was not living before I did not see the need to worry about it. Even when I almost did die. I felt the step was the right one for me because if I did live it would give me a chance to really live and that was what I wanted most of all. It is good to weigh the pros and cons regarding this surgery. Be sure you are willing to take the risks...

........

I think even though for me it was good, bad and ugly. I would do it again! I mean that too.....I am a live now I was not before the surgery...Too much pain. Could not walk far. Lower back issues. High blood pressure. and so on!

this is so true. i wasn't your weight, but even at 250 my body was breaking down. i couldn't wipe my butt. i smelled funny from all the folds i couldn't reach to clean. i was out of breath from talking. i waddled. take a look at my before pix. i was a bloated mess. i felt like crap. a single woman age 42. where was my life going? downhill. i kept gaining weight, i had thyroid problems and bad anxiety. i thought i was going to die any minute. now? this leak is temporary, and when it's healed, like rj, i will be free, i feel like a butterfly, not quite out of her cocoon... ready to fly. maybe by spring? maybe this summer i will hike and walk and swim and go out in public and buy a beautiful dress without feeling ashamed of my body.

no maybes. it will happen.

You will work hard for this and paid a huge price for it. It will mean a lot to you are each step unfolds....Great attitude Ana..That's the way to play it trust me!

[Mississippi Girl 124]

I am scheduled for surgery in Mexico on the 10th, which is this coming monday. after reading all of this, i just don't know. i know there are risks with anything. this really makes me wonder…. i am so sorry for those of you that have had such a horrific experience. this should have been so different for you. i will forever think of y'all and keep you in my prayers. i just don't know if i should do this. my husband knows and is on board, but my children do not…they would raise all kind of cain with me over this.

[RJ'S/beginning 5,357]

I am scheduled for surgery in Mexico on the 10th, which is this coming monday. after reading all of this, i just don't know. i know there are risks with anything. this really makes me wonder…. i am so sorry for those of you that have had such a horrific experience. this should have been so different for you. i will forever think of y'all and keep you in my prayers. i just don't know if i should do this. my husband knows and is on board, but my children do not…they would raise all kind of cain with me over this.

You know what Mississippi Girl. This is all about you hun and what you need. It is about how much you want to change your life and the chances you are willing to take to make those changes. The way I figured it was that I was near dead already and if I died then what was the difference. I was existing, nothing more then that. I was unable to move well, stand for more then 10 min. and would have Migraines constantly from a back injury. Not to mention a lower back disc ( herniated ) which made things much worse.

I spent all my time playing Farmville on the computer for years and just knew I was going to either die or be in a wheelchair for the rest of my pathetic life. I could not tolerate a wheel chair so I did it. At the time no one ever mentioned to me that there was a possibility of complications. i was not educated enough to know. Despite 2 years of research and constant video following folks. No one went through what I did without dying....

I put it out there so that everyone knows that there are risks involved and that you should not ever take this step lightly. The other thing is that those people who say this is the easy way out need a good kick in their arses.

The last thing is do I regret it even though all of this happened to me. NO! I am glad I did it! for me it made the world of difference and I am a live and living finally after so many years almost a shut in....I love life now. not saying it is a piece of cake I know I paid dearly but it has been worth it hands down for me.....

I hope you do look at this seriously and when you do decide to do it. You will be on board 110%....I wish everyone could know the differences I feel now compared to before I had the surgery......

I wish you all the best....message me when you decide. I would love to know what you have decided to do....K

[AnaBanana 63]

I am scheduled for surgery in Mexico on the 10th, which is this coming monday. after reading all of this, i just don't know. i know there are risks with anything. this really makes me wonder…. i am so sorry for those of you that have had such a horrific experience. this should have been so different for you. i will forever think of y'all and keep you in my prayers. i just don't know if i should do this. my husband knows and is on board, but my children do not…they would raise all kind of cain with me over this.

please don't let my leak affect you! yes there are risks definitely but honestly, as much as i come on here and whine and cry and am depressed, understand this is me at my worst. and as bad as it sounds there are much worse things that could happen like co morbities with obesity. those build up and last a lot longer than a leak and do damage to your body. listen to rk. she is a wonderful example of someone who needed surgery. to save her life.

this is a temporary thing some of us have to go through. i will start helping/supporting others once i'm healed and this is over. i would do the surgery again... honestly.

chances are you have nothing to worry about, but if you are paying attention to your body and educating yourself with what symptoms to look out for, you will do great, leak or no leak. and come here for support if you have questions, and keep up a good comraderie with your surgeon, and have back up medical care that understands what you did where you live.

having complications doesn't mean your life will always be in danger. especially if you use your sixth sense and listen to your body..

my motto is this... 'if i have never felt this pain before i head to the ER'. believe it or not it saved me a lot of grief because i came in before my abcesses caused problems. my doc was able to clean them out before they spread and made me sick.

i think all of us who have had problems have done things like that. and if you don't think you know your body, if you do go through these types of things you sure learn fast how your body works!

GOOD LUCK WITH YOUR DECISION.

[green*eyed*girl 170]

Ana I am so happy to read that you are in a better spirit, that's the way to go! You are going to beat this, you are almost there, just try to be strong for a little bit longer! Always when I come to this site the first thing I do I check out the Complication Board because I am worried for you guys and I want to read good news! I wish you the very best Ana, and keep us updated! <3

[Mississippi Girl 124]

thank you all for the encouragement! ana, i was so happy to hear you would do this all over again. when you say know what signs to look for…..what do you mean? i do feel that i know my body pretty well. i know when something's weird happening. obviously i have a problem with knowing when to stop eating though. so i have to wonder how well i really do know. i am to leave sunday. i feel as though i will go through with this….yet not 100% have any of you ever heard of either of these doctors, dr. Ponce de leon or Dr Jose L. Curiel? what about Jerusalem Hospital? Would love to hear your thoughts. I will keep you all posted. love from, Mississippi!