I need some prayers

I don't get on line very often due to time but, I read all your enetries as much as I can. I am fairly new to this site but, have a bond of course due to age and our weight loss journeys. When I first blogged on I eluded to the numerous complications I have encountered over the past 16 months (to the day). I seem always to hit a new snag in the road when things start to resemble a normal life for me and at times it gets discouraging. But, this latest is more scary than discouraging so I need your prayers. I have a feeding tube and have had one for almost a year. It is in essence my life line. I really have had no problems with it and my surgeon has changed it evey three months because the balloon does not last long ( it is placed in my remmenant stomach which makes HCL ( or stomach acid) and that erodes the balloon. The insertion site has always looked good and I keep it very well protected due to my position as a hospice nurse. Well, low and behold thursday I woke up and the entire bandage was filled with blood and it even leaked out during my shower. I just redressed the site and went on my merry way to work. All day my left side was so tender I was nauseated and felt punky. When I finally rolled in at 5pm I thought maybe my tube was pulling and when I looked at the dressing it was totally covered with some not so nice looking drainaged and I will spare the details on that. I absolutely went into panic mode. I never had to call my surgeon on call and had dealt with all my issues during office hours. Well, not this time I was on that phone so fast and of all the nights BOTH surgeons from the practice were off. After dealing with a guy who was familiar with me and I had to tell him what to order as far as antibiotic...I thought oh boy I am in real trouble here. But, the blessing is my surgeon is never in the office on Fridays but, in surgery and Friday he was seeing only a handful of people and they squeezed me in. He feels that there was a blockage of the tube to the opening and that this would resolve after he adjusted this. But, it has not. I still have pain and very unpleasant looking drainage. The antibiotics are on board. This tube is my lifeline. I get all my nourishment from it except the few bites and maybe 40 ounces of fluid I can handle in a day. If this infection gets out of hand he said I would have to have the g-tube pulled and he would have to find an alternative way of feeding me.Then when the area is healed and the infection gone I would have to go back to the OR and have it reinserted again. There is only 2  alternative ways to get the nourishment I need if this happens- a NG Tube ( down the nose people) definitely not an option or a central line into my vena cava that dumps food into the chambers of the heart and circulates out through the aorta ( not my ideal but, better than down the nose). I would covet your prayers.Another blessing he does not want me  to speak to anyone but, him at this point and he gave me is private cell number and I can call at anytime. He told me he doesn't like when I panic and he knows how scary this is for me. He said we have been through so much together and he wants me to know he is always available to me if I need him. How sweet is that? I am due to go to the Cleveland Clinic on September 18th for a 2nd opinion with Dr. Philip Schauer. If he( Dr. Schauer)  believes there is nothing that can be done than my surgeon wants to start at square one and do the entire gastric by pass over...my options are not very appealing are they? I had gotten to the point where I could accept my limitations and live with the g-tube but, this new development with the infection I am in a state of confusion. I find myself often in this place since my gastric bypass. I have much to think about and decide and would really appreciate your prayers... Patricia

I have some real stupid questions to ask of you if you don't mind.
1. Why is the feeding tube in the remnant stomach?
2. What is happening with your pouch?
3. Why not do a revision to a different type of WLS?
4. What are his long term plans? feeding tube for life?
6. I would be curious to know what your labs are running....

Have you use TPN at all?

Hi Darlene: I don't mind answering your questions at all. The feeding tube goes into the rement stomach because the pouch is too small to hold the volume of feeding per hour. I am able to eat a small amt and I can drink some fluids so that is kept open for that. If the feeding went into the pouch it would also malabsorb like the food does because of the gastric bypas and would not be beneficial. After the bypass in April 2007 from Day 1 i have not been able to tolerate more a sip or two, I spent the lst 5 months following the bypass in dehydration mode that led to full blown starvation ( I am serious about that) I was in protein malnutrion. In September when I was as close to death as they come the lst thing was TPN before he could take me to surgery and put the tube in, my body would not be able to accept the feeding anyway because you have to go very slow in refeeding a starving person. It took 3 weeks of being in the hospital to make me stable. I have had 3 dilitations, a revision of the anastomosis (proximal) and so many scopes-soon to be 8 come my visit to Cleveland.The structural problems are mainly resulting from massive adhesions and an over zealous body who likes to produce them.But, the most recent finding is that my small intestines have shutdown to a crawl and this is why I can not eat a large portion or go past sipping. The question is why? That has not been determined yet and that is why Cleveland. This is my 2nd g-tube. Dr. Felix removed the lst one on 3/10 because he felt I doing well enough to take it out . I was getting in 800 calories a day...Well, within 3 weeks it was all over and I was back in dehydration mode and by May 14th I again was near death.I am serious about the death stuff. So, back to the OR and another feeding tube was inserted.I spent 9 days that time because we all knew what to do to make a quicker recovery. The possibility is this is permanent. I am willing to accept this because I want to have some normalcy to my life-even if its with a g-tube.But, my dear sweet Dr. Felix who grieves over this more than I think I do at this point is not willing to accept that. So, that is why he wants to redo the entire surgery if Dr. Schauer has no solutions. I just had labs done on 8/19 and finally after 3 mos back on the feedings they are normal except for a little anemia. I over all feel fantastic compared to month and months of feeling like I would die. These past 16 months have been the greatest experience for me. I have a deeper faith in Christ. I stand by Romans 8:28..."And we know that ALL things work better for good to those who love the Lord and are called according to His purpose" Soooo, much good has come from this for me...if you read my profile I outlined some things. No recent TPN but, that might be considered probably if this needs to be pulled etc... Keep in touch Darlene I appreciate you questions...I want to info and help those who may be struggling or have struggled. This surgery is not a cop out or the easy way out...but its life saving and I stand by it 100%....Patricia

Patricia,

My Oh My!! Those are heavy duty complications. I admire your positive outlook and faith.

Annette

Thank-you Annette I appreciate you reply. I wanted so badly to be the Poster Child for this surgery but, my poster reads wjat you don't want to happen to you after a gastric bypass LOL!  I have prayed that maybe through my experience someone else will not have to endure so much and things can be fixed more readily....Patricia

Hi Patricia  -  I am up late tonight and just saw your post. 
I always pray on my way to sleep, and I will include you in my prayers tonight and for as long as I know that you want me to pray for you (can't guarantee that the big guy listens any more to me than anyone else, though).  I know how it feels to be afraid, and I am sending you a lot of positive thoughts and a big hug across the miles and an international border.
I hope that you have a good rest tonight  -  you will be in my prayers.
Margaret  

Margaret: My congrats to you who has survived breast cancer... I always tell my surgeon that the reason I run back to work so quickly after a set back is its therapuertic for me and makes me put the key into the lock on my big mouth. As a Hospice Nurse you know i have seen far worse things and people have experienced far more worse things than I ever have.They  would trade lives for mine in spite of a little annoyance like a feeding tube. However I do realize the severity of my situation and that is why I usually go into a panic mode. When I am the patient I forget I am a nurse and when I am a nurse I never forget I am a patient with complications who can lend somesupport and understanding to my patients. It has been a blessing for me these past 16 months but, I know I have needs like this infection that need to be addressed...Thanks for the prayers and please keep in touch...will be looking at the boards for an update on you...Patricia

Patricia, please rest assured that you came to the right place for prayers. We are a big bunch of prayer warriors here.

I am so sorry for the problems that you are having. I will keep you in my special prayers (I don't guarantee either that God listens to me anymore than others either, but I try!) for as long as you need them. I hope that you keep us posted on how things are going. I pray for only the best for you. I am also praying for your doctors too.

Take care and know that we are here for you for anything. Even if you just want to sit and chat, since that is something we all love to do.

You know Brenda my sweet friends Baseball Mom and Lora 13 hooked me on this site and I have watched an amazing network of people from across the country connect. I have had some reall belly laughs...the most recent with the gal trying on the bathing suit. That little ditty flew around my office and the howls that were let out...I knew they were reading her story. I appreciate you prayers and God's ears I know are pretty big and he sure isn't deaf...I am glad to be numbered with you prayer warriors...Patricia

Aloha Patricia........I just read both of your posts, and I can only say that I totally admire your positive attitude in the face of many daunting challenges you've had since WLS. I have a feeling you will come out of this a winner all around......and you are just on the path with good people trying to figure out how to best fix things.

We WLS peeps need to hear the complications that can arise after surgery as well as the successes and easy outcomes. I very much appreciate your sharing your story with us, and I hope you will come back often and fill us in on your journey.

Your job is one of those that is HUGE is how meaningful it is....and I admire you greatly for the help you give people. Now it is your turn to get help, and I hope it comes to you in bunches.

With much aloha,

Maui Karen