May 28, 2008
May 28, 2008
Well apparently that didnt solve the issue and they think i may have Chronic Pancreatitis and what im experiencing right now is like a flare-up. The doctor said that generally eating by mouth just upsets the pancreas more but going back to IV nurishment isnt an option for me right now. I have to keep food and water going by mouth so the scar tissue wont close things up from this last surgery.
Does anyone have any experience with Pancreatitis? What were your symptoms? What seemed to help or make it worse? Any info would be appreciated, i'm just trying to figure out if the abdominal pain im experiencing now after eating is related to this and what my next move should be to avoid these flare ups.
Down almost 180lbs now, trying to STOP losing. I wouldn't mind gaining a bit actually. Never thought i would have that problem. ha.
May 12, 2008
May 12, 2008
I've had ongoing problems with dehydration and electrolyte imbalances, particularly potassium. I've lost count as to how many times i've been hospitalized for it since surgery..over 50 times easily. Now we have it set up where i just go in for infusions every few weeks and get "rejuiced." I have a very difficult time sustaining myself from what i eat by mouth, most of the last year i have been on TPN through different central lines. Every time i get a line put in i end up with Staph or some other infection and we have to remove it and i try eating by mouth again. Another biggie for me has been scar tissue, my stoma keeps closing up over and over and i have to have Endoscopy procedures done to dialate and open things up.
I really thought i was doing better a couple months ago, i have severe muscle wasting from the lack of protein and i was trying to get stronger, even started some pool physical therapy...i was trying to eat and started having constipation problems...like severe impactions. They tried numerous colonoscopies but i could never get my system cleaned out enough to see what was going on. I was vomiting several times a day but i was just trying to push through it and force myself to eat. I thought my continued nausea problems was due to the constipation and stomach upset i was suffering through. One night my husband ended up taking me to the ER again because i got so dehydrated that i started passing out when trying to stand and they ended up admitting me. My GI doc decided to do another Endoscopy since we couldnt see anything the other direction. This time it turned out the bottom opening of my pouch was so completely closed off with scar tissue there was no way to dilate it. They said my only option was another surgery.
They told me full revision or complete reversal. My GI doc pleaded with me to do a reversal but i was scared of how complex that surgery is and the rough recovery. My surgeon was very upfront that he had never taken on a case this complex and that if i wanted to seek out another medical center he would support me and be along for the ride. We discussed all the options and i chose the revision. My surgeon brought in another surgeon who had done this procedure before and his mentor from the Cleveland Clinic flew in to assist.
They sent me home for two weeks on TPN to build up my strength and protein levels so i could heal and set up the surgery for April 23rd. The surgery went well, they ended up having to cut away the bottom half of my pouch that was completely closed off due to scar tissue and another ulcer and they removed another section of my intestines that had also closed off and basically just reattached what was left. I had some heart problems during the surgery and was in ICU for several days because they thought i may have even had a heart attack..i was in SVT's. The surgeon told me i had a 50/50 shot of making it through.
I'm left with a pouch that can handle about 3 teaspoons of food at a time and they made the stoma quite large because of fear that the scar tissue will close it up again. The surgeon said i must push push to keep liquids and food going all the time, especially while im healing because thats the biggest opportunity for scar tissue to take over again. He said if this happens there is nothing more they can do for me.
I've only been cleared to eat solids for a few days and so far so good. I'm being careful and while im still suffering with the nausea im trying to push myself to eat and sip, sip, sip. My new stomach is very touchy and eating so far does seem to cause a lot of pain and a loud gurgly response from my pouch.
So that's where im at right now. Hoping this new pouch will cooperate and that i can start to heal and move on.
April 16, 2008
Apr 16, 2008
Recently i was in the hospital for a week or so and we discovered that i have a total obstruction. I'm having another surgery on the 23rd and Dr. Mailapur is going to go in and remove the bottom part of my pouch, its completely closed off due to scar tissue. He will also cut out the area of intestines that are blocked and then reattach whats left. This is very risky and will make my pouch even smaller but the only other option was a reversal and they dont feel that im strong enough for that complex of a surgery.
Dr. M sent me home on TPN to build up my strength and get my protein levels a bit higher so i will heal better. He is hoping to be able to complete this surgery lap but im prepared for the fact that once he gets in there it may be necessary to open me up. I hope, hope, hope he can do it lap.
I just have to say once again that Dr. Mailapur is amazing. He is bringing in another surgeon to assist him on this procedure, someone he feels has more experience with repair/revision type surgery and he openly admits this will be a new challenge for him. Just the fact that he is so honest with me and upfront about these things is so impressive. Most stereotypical surgeons have to much of an ego to admit something like that. I trust Dr. M and i have so much faith in his skill and instincts.
So everyone please keep me in your thoughts as i face another surgery. I'll try and update soon. Thanks!
One year surgiversary
Feb 09, 2008
It’s hard to come up with a word that defines what this last year has been like. I started on a journey, making a selfish decision that i thought would better my family and myself. I thought i was going to become healthier, happier and more active. I dreamt of all the things i was going to accomplish with this new found energy and finally i would over come this embarrassment and self hatred that i looked upon myself with.
I think that obesity truly is the last acceptable form of discrimination out there. I was so tired of fighting the stereotype and of fighting myself. I can remember the last trip i took before surgery to surprise my pregnant sister at her baby shower. I held my breath as i got on that plane, praying i would fit in the seats, to my horror i couldn’t even fasten the seat belt and i was too ashamed to ask for an extender. I saw the look on the persons face coming up the aisle when they realized they had to sit next to the fat girl. I still automatically scan a restuarant for the widest booth, i still look at the Plus Size section at a store remembering how you can never find the cute styles in my size. I told myself enough was enough and that i had finally reached enough lows that having Gastric Bypass surgery was worth the risk. I didnt feel like i was living much of a life anyway.
I think everyone prepares themselves for the what-if’s and i researched for years the different types of procedures all the pros and cons and i felt like i was ready. Little did i know that my world was going to be turned upside down. So one year ago today i showed up at the hospital for my surgery hopeful that my life would change. Change, it did! Unfortunately i was one of the unlucky few who have massive complications. I have spent more time this last year in a hospital than at home. I’ve put my family through hell and nearly lost my life on several occasions. I now know what it feels like to be disregarded by a doctor and made to feel stupid and on the flip side I’ve seen a surgeon step up, despite the political backlash and save my life.
You really find out who your friends are when you endure something like this. I was surprised by a few people i thought were lifelong friends that didnt show much support and there have been others, even complete strangers who have given love, support, money, groceries and long visits at the hospitals. I’ve met some wonderful people online that have been with me every step of the way through my rants, hopeful moments, and bad cries. I’m so thankful for the people in my life that have helped me through this last year and im so sorry to my family for what I’ve put them through.
Now down 165lbs im starting to gain some strength, im starting physical therapy soon to help me get back some muscle tone and help with the basics. I’m learning to eat by mouth again and finding what i can and can not tolerate. I think I’ve turned a corner and im hoping that im finally in a place of healing, i know it will take time but it will be nice to get back to normal things like driving a car, going to work and getting back to my singing.
I hope i can get to a place where i can look back on this experience and see that it was worth it, i hope my health will be better in the future and that i can enjoy this new body. I’m looking forward to better days and im thankful that im still here to share my experiences.
Here’s to a wonderful 2008 full of love, healing, health and laughter. Oh, and music.
September 20, 2007
Sep 20, 2007
I finally decided i was going to chop my hair off or just shave my head, my hair has been falling out in clumps for quite awhile now due to my lack of protein and poor health. It's shocking to see my hair this short, its a shame it wasnt healthier i feel bad that i cut so much off and couldnt donate it to Locks of Love.
August 22, 2007
Aug 22, 2007
The surgery the following day was put off till about 3pm so that they could get my Potassium levels up and get more fluids in my system. Dr. M was not that confident that he would find anything but thank goodness he was willing to try.
After several hours in surgery Dr. M was shocked to find a duodenal ulcer had perforated and i had a quarter sized hole in my intestines, things were just emptying into my abdominal cavity...i was in the beginning stages of becoming septic and he said basically the only thing that saved my life was that my liver had in a way "suctioned" to the hole.
I'm home and back on TPN with home health services coming out 3 times a week while things heal. I'm cautiously optimistic about how things will progress now but its hard to tell until i try eating again. I'm just thankful to be alive and so grateful to Dr. M for not giving up on his "mystery patient."
August 6, 2007
Aug 06, 2007
I had a feeling this wasnt going to be it and tried not to get my hopes up but i was really disappointed anyway. I got emotional and started crying and the poor doctor said "is there something im saying or doing thats causing you to cry?" and i just had to explain that we thought we finally had some answers and it was just really upsetting.
He is doing exploratory surgery on Wednesday but doesnt feel that confident he will find anything, he said if nothing is found that he is going to put a G-tube into my stomach and i'll be getting nurishment that way for awhile.
I feel like im losing this fight. It's been a very upsetting day.
July 29, 2007
Jul 29, 2007
Well i had a really difficult time with the tests, i couldnt complete the bowel series because i couldnt drink enough of the barium. They start out with you standing up with the machine up against you and hand you this little cup full of crystals, when they add some solution it begins to fizz and they tell you to chug it. Well i took a big drink and my body reacted violently, i immediately started choking and gagging, my legs went out from under me..they were having to hold me up, it was horrible.
They put the table down flat and had me lay on that and gave me the thick barium through a straw to see if i could get just a couple sips down. I could watch it on the screen go easily down the esphogus and fill up the pouch but then it wouldnt empty out..it was just sitting there.
So after a couple hours of torture they sent me home and told me to call the doc office and let them know i couldnt complete the test. About 2 hours later the doctor called me and said he wanted me back at the hospital to do another endoscopy (scope down the throat) which is like the 5th one i've had now and he wanted to do it ASAP, so i headed back to the hospital.
Well we may have found the problem! Where the pouch and old stomach connect there is this pocket off to the side where food or stomach acid is just pooling up and sitting and its definately not supposed to be there. He said when the pouch was created it was done incorrectly and will have to be surgically fixed but he feels like this may be whats caused all my problems.
Now i must wait for the surgeon to come back from vacation and see what he thinks and how soon they will do surgery to correct things. I'm not getting my hopes up yet but i really really hope this solves my health issues.
July 27, 2007
Jul 29, 2007
I get bumped around from doctor to doctor trying new medicine, more tests. I've been in the hospital several more times since my last update and still no real answers.
I have to have and Upper GI and bowel series redone because the hospital lost the results so i get to gag down the barium again tomorrow. Trying to remain positive.
April 20, 2007
Apr 20, 2007
I've had a fever for 7 days with horrible coughing. Spent the last few days in doctors offices and having tests done, all of which have come back fine.
Had the appointment with the Infectious Disease guy, i've heard he is the best around here but man he is odd. Not a freaky way, but that "im too freaking brilliant to fit in with normal society" kind of odd. He feels that the most likely culprit for the fever is the Hickman Catheter and that it probably needs to come out.
Yesterday i had the follow up with Dr. Mailapur, who took out my gallbladder. The receptionist was SO behind we waited for an hour and a half in that waiting room. You can tell there is something obviously wrong with me, i have the little backpack with the iv pump in it i have to lug around, its connected to me like an IV that runs down my shirt sleeve into my chest...you cant hide it. You could tell the people in the waiting room who were pre-ops thinking "oh god, what happened to her?" And of course theres a few brave enough just to come out and ask "Oh god, what happened to you?" So i had to tell my story about 15 different times as people came and went. I also saw quite a few post-op gastric bypass patients coming in for check ups who are doing amazing.
When we were finally taken back to the room i just lost it, i started bawling. It was really hard to be out there and watch so many people who are doing so well..not that i wish them any harm, but you know what i mean. There was a lady standing at the receptionist counter scheduling her actual surgery date for a week down the road and she was asking the most insane questions. "Can i still have my coffee after surgery?" "Italian is my favorite, how long till i can have pasta?" "We usually have martini night, i can still go and drink a few right?" I wanted to stand up and smack her! You freakin idiot have you researched this at all, do you have any idea what you are getting ready to do, how your life is going to change forever?
I sat in the office and just cried to Brian, i researched this for YEARS, i fought my insurance company and worked the system for 10 months just to get approval...i fought really hard to do this, and here i end up being the person that has all the complications and then you see people acting like its just no big deal who breeze right through everything.
Once again i would never wish an ounce of what i've been through on anyone else i was just so overcome with emotion in there and frankly its hard to stay positive about all this...i was feeling sorry for myself. I am so overwhelmed with guilt also, i chose to do this. I have put my family through so much. The pressure that Brian and the kids are under just breaks my heart. Life doesnt stop just because im sick, we still have ball games, girl scouts, fire department obligations...Brian is the Chief, he has to run the damn place, bills dont stop, phone calls dont stop. Brian had a death in the family a few days ago and now has relatives coming in from North Carolina, i cant offer for them to stay here...im too sick.
Okay im done with the pity party. /wipestears
The surgeon agreed to take me on as a patient and manage my gastric bypass side of things from here on out, so the other guy is officially fired. He ordered another scope to see if the ulcer is still there, better, worse, whatever and see if anything else might be going on in there. He stated that his feeling was, if the scope comes back clear then we need to get the Hickman out, stop the TPN and i need to eat. Sink or swim. I have to get over my fear of food and that if the Hickman is causing the infection and fever then removing it should eliminate my current nausea. We shall see what happens.