Tammy G.

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I still have a significant open wound that won't heal.  No surgeon or doctor seems to want to help me.  My labs are horrible, even though I take my supplements.  I've tried everything.  I don't know what to do anymore.  I just get weaker.  My rheumatoid arthritis is eating me up.  I've slid backwards on my mobility.  I haven't gained any weight, my body is still melting, but I don't see the scale move.  My pannus is past my knees, touching my shins now.  It is a huge flap.  As long as it is pulling on my wound, it won't heal.  I am lost.  I am tired.  Almost 16 months of trying with no results.  Traveling to surgeons who won't even return my calls.  Drinking expensive supplements that only drain my bank account, not grow tissue.  Yes, my mood is bad and my outlook is negative.  I don't see any end in sight.  

 

I just wanted to live life by participating, not sit on the sidelines watching.  I'm back to square one minus.

As I write this, at 6am on a morning where I haven't slept at all, I feel lost, hopeless, drowning.  My life's motto when I'm in a funk is "It could always be worse."  And it could be worse, but right now it is bad enough.  People tell me that I am STRONG.  That I CAN DO IT.  My resolve is weakening.  I feel my body deteriorate a little more each day.  Last May, June, July--I had hope.  Heck, I even thought things were changing in September.  Yeah, right.

Backstory--I had a distal bypass WLS in June of 2011.  It was uneventful.  Everything went well.  I lost weight.  Slowly, but the weight did come off.  I started off as supersized at 5'2 and 456 lbs.  I could barely breathe, couldn't walk 5 feet without needing to sit down.  I had to have help to do everything and anything.  I didn't leave my house for months at a time.  WLS saved me.  When the weight started coming off I felt like a butterfly coming out of my cocoon.  I was walking every day.  No wheelchair anymore.  I still needed a cane because of my RA, and to use a ramp, but I could walk for a pretty good distance.  I could breathe again.  I was finally able to take a tub bath and get out with minimal and sometimes no help.  I was happy.  It wasn't easy, especially being a carb addict, but I was handling it.  

Last year, 2 days before Christmas, on a Sunday morning, I was in excruciating pain in my back and abdomen.  It was that feeling when you eat a protein that is too dense without chewing it fully, and it gets stuck in your stoma and you have to chew papaya or drink a bit of pineapple to get to break up.  Only it had started in the middle of the night, and I hadn't eaten anything to get stuck.  I kept thinking it would pass, but it didn't.  My belly blew up like a balloon.  I was in so much pain I couldn't even think.  Long story short (and in the previous entry) I had a small bowel strangulation, my remnant stomach and large intestines were stretched to capacity and my organs were beginning to shut down.  The surgeon said there was a slim chance that I would make it, but I did, and the day after I came off the ventilator, December 26, he told me that I had a long road ahead of me.  He was right.

I felt pretty decent once I got out of the bed at the hospital and walked around the ward.  The more I moved, the less the pain remained from the surgery.  The day I was to go home my incision--from the bottom of my ribs to my belly button--had broken open at the bottom and sprung a leak--probably from the weight of my huge pannus.  I ended up having to have the whole thing re-opened.  I could literally see, and touch, with gloved hands, my abdominal muscles.  When the culture came back I had 3 serious hospital acquired infections--MRSA, Klebisella and Entercoccal.  I was put on heavy duty IV antibiotics.  After a few days all of my veins were shot and they couldn't give me IV antibiotics, so I was sent home.

With the help of family and home health care nurses, I worked on getting rid of the infection and getting healed.  I had another surgery February 6.  The infections were horrible.  Nasty.  Gross.  My wound, which was huge, oozed the nastiest of slimes.

I finally started doing better, gaining some strength back.  I dismissed home health care in July, and with the help of an infection specialist, I am, to this day, infection free.  My wound, however, hasn't changed in all of that time.  I saw a general surgeon to see if the wound could be closed surgically, somehow.  After losing 150 pounds, it is in a part of my belly that just hangs and the weight from my belly apron, which is now past my knees, pulls and tears on it, even with binders.  He said nope, let it heal on its own.  It can take 2 years or more, but it will eventually close.  I was disheartened.

Then I was contacted by a abdominal reconstruction surgeon who was given my name and situation by my previous home health care agency.  She is primarily a surgical oncologist, but she has an interest in complex cases like mine.  So I met with her on 2 occasions and also met with the plastic surgeon who works with her.  They told me that they could help me, would help me. Told me to prepare for surgery around the third week in November.  I've called on several occasions, but I am always put off, told they are working on logistics, insurance approval, etc.  The plastics guy told me he would do my panniculectomy pro bono.  He said he had never seen one like mine, just a massive amount of skin, like a flab skirt.  So I wait.

But as I wait, I am losing hope.  I feel my body getting weaker, not stronger.  I can't walk like I used to.  I have NO stamina.  I am so tired all of the time.  I think I have given up.  I will be 50 in a few days.  I don't even care.  At this point, I am just a burden.  I feel like I've been through so much, but to what end?  To live like this?  I know it could be worse.  How do I find the strength to go on?  And no weight loss in months.  And I have tried.  I know I'm still malabsorbing fats and my labs are dismal.  There are not enough supplements in the world to get them to normal at this point.  I'm just so tired of trying.  I wanted a good life.  I know I am loved.  My life isn't bad.  I am just so depressed, and not just because of the wound.  I can't take my RA meds with an open wound, so I get 2 pain pills a day and prednisone.  I don't take the predisone unless I have a flare up.  I am in pain 99% of the time.  Nobody cares.  I'm just tired.  I can't take much more.

 

  Let me tell you, this last couple of weeks have been a nightmare.  I went to be on Sat night, Dec 22, feeling great, anticipating shopping the next day to finish off gifts for the grandkids and stuff for Christmas dinner.  I was, for the first time, going to cook Prime Rib, since it was on sale and would be a real treat.  Anyway, at 4am I woke up in pain in my stomach.  I thought it might have been something I ate, since my tummy is tricky after WLS, but it usually acts up right away, not hours and hours later.  My stomach started bloating--like I was having twins and ready to deliver.  I was in so much pain.  Then my kidneys started hurting so bad.  I tried to go to the bathroom, but it wasn't that.     I woke Butch up at about 5:30 and told him something was wrong.  I needed to go to the hospital.  He really wasn't waking up, so I took a pain pill and tried to go back to sleep, but there was no way.  I actually took another pain pill.  After about 20 minutes I told him that I think I had to go to the ER.  He still stalled on me.  I got up and went to the living room.  He didn't get up.  After a little while I went and lay back down.  I then forcefully told him that something was seriously wrong and he needed to call an ambulance.   He finally got up.  I could not move, the pain was so intense.  I couldn't dress myself.  He pulled a nightgown over my head and put socks on my feet and called 911.  They got here and got me to the hospital.  The hospital triage put me in the waiting room!  I sat out in a full waiting room in a wheelchair in agony for almost an hour.  They thought I had stomach flu--not critical.  They took me back to the not critical section of the ER and put me on a stretcher.  I don't even know how I was conscious because the pain was so great.  The tech took my temp.  He said "this machine ain't working cause you have the temp of a cadaver."  Yes, he seriously said that.  He got another one--96 degrees.  He took it rectally--95 degrees.  They RUSHED me to critical care.  My organs were shutting down and all blood flow was being directed to my brain, lungs and heart.  My kidneys were almost gone.   They did blood work and a CAT scan and found my bowel was being strangulated.  Blood works showed my lactate level was 3.5.  4.0 is death.  Anything over 2.0 is life threatening.   The surgeon on call had to make a decision--to either let me go, making me comfortable with morphine, or do the surgery, which might already be too late.  He decided to do the surgery.  The anesthesiologist had to bring his kids to the hospital because he had no babysitter.   The surgeon, Dr Halpert, was blunt.  He told me and my family that the chance that I would survive the surgery was slim, and if I did I was likely to have severe organ damage.  My poor mother could not stop weeping.  I was at peace.  I just wanted the pain to stop, and if that meant going to Heaven, then I was ready for God's plan.  I got to say goodbye to my closest family except for the kids.  My youngest daughter was out of town, so my goodbyes were on the phone.  She immediately started the 4 hour drive home.   Next thing I remember was waking up in intensive care.  I couldn't breathe on my own, so I was on a ventilator.  At that point the only thing I could move was my eyes.  It was beautiful to see my family gathered around me.  I eventually could move and could write notes to communicate.I was intubated for 2 1/2 days.  It was so horrible when the sedation would wear off.  The condensation in the tube would make me cough--and you can't cough with a  tube in your throat.  It was breathing for me, but I felt like I was drowning.    I was finally weened off of the ventilator and when everything was good, I was moved to a regular room.  The staff was so good to me and I felt I was well taken care off.  The love and prayers I received really did make a difference.  I made sure to tell my family to let my online family know what was going on, either way.     I was healing well, doing physical therapy, etc.  Ready to go home on Saturday, after a week in the hospital.  The doc comes and and I've sprung a leak at the bottom of my staples (40 of them)  I am cut from the bottom of my ribs to my belly button.  I also have a gastric tube coming out of my remnant stomach just in case I balloon up again since they really don't know why I did this in the first place.  The only guess is adhesions from my lap WLS & previous lap gall bladder surgery  twisted my intestines up.  Dr. said I needed to stay one more day.  Good think I did because that trickle turned into a waterfall of the most disgusting pus and blood.  The Dr pulled out half the staples and started me on wound care.  The open wound is about 4-5 inches long and at least 3 inches deep.  The dr said I'd probably be in the hospital for months.  I had to be sedated.  I just couldn't take any more.There was a charge nurse, Ducky, that just held me, calmed me, told me that I wasn't being punished by God.  At that point I thought it would have been better if I had just passed on.  I can't believe that I had that mental state, but it is what it is.   So with wound care it was like starting recovery all over again.  All the soreness I had worked so hard to walk out during PT was back and worse.  I was constantly draining, making a mess everywhere.  It was absolutely miserable.  My bed was so uncomfortable and Butch brought my fleece blankets to lay on, but even now my lower back, tail bone is sore.  I resigned myself to a long stay, but then my doc comes in and tells me that my wound is clean, healing really fast, and he wanted to get me out of the hospital before I got a superbug.  The infection I had gotten was an easy one.  We didn't want a hard one.   So I got to go home.  I am so glad to be home.  It isn't easy---I have trouble getting up and down still.  The nursing company that is visiting me daily ordered me a toilet riser so I don't have to strain to stand up, but it hasn't come and I expect by the time it does that I won't need it.  Still dealing with the drainage--gotta have a constant supply of clean sheets.  Having trouble eating, but I am doing what I can do.  They want me to get 140 grams of protein a day, and it is hard.  But I will get through this, with the continued support and love of friends and family, I will get through this.  

 Well, I finally did it.  I'm getting dentures.  The rheumatoid arthritis for the last 15 years had really done a number on my teeth.  RA is an autoimmune disease and some things just go along with it, like peridontal disease.  I really tried to take care of my teeth--they were so pretty before I ever got RA.  Anyway, since I had RNY, things had gotten even worse in the dental department.  I couldn't put it off any longer.  A week ago today I had my remaining teeth extracted--15--and I had to have bone removed (tori) off of each side of the jawbone.

I had my stitches removed on Monday.  I am still having some pain.  Popscicles help some.  It is humiliating to not be able to talk well and I avoid speaking.  Except for the oral surgeon, I haven't left the house.  I can't get dentures fitted for another week, at least.

Of course, with tender gums and no teeth, I am on soft food/purees again.  I am missing my vegetables.  I need to buy some and boil or roast the crap out of them, but I haven't felt like cooking, so it has been cottage cheese, yogurt, refried beans tuna, etc.  

Except for my immediate family and a couple of friends, I haven't told anyone I am getting dentures.  I'm not sure why I am ashamed of it, but I am.  It will do so much for me instead of the bad teeth I've been dealing with.  My C Reactive protien (which measures inflammation) should go down.  My heart will be healthier without the dental infections.  It is a win-win situation, so why am I grieving the loss of my teeth?  

First I want to thank Kathy & Jack for being concerned about me.  I was in a very bad place when I wrote the brief blog post I later deleted.  Thank you for reaching out, even if I wasn't in a place to accept your help.

When I saw my psychiatrist almost 2 weeks ago he prescribed me Wellbutrin.  It was supposed to elevate my mood slightly and help with some small OCD issues I was experiencing.  I was on a low dose--75 mg.

 

Every day I was taking it, expecting that mood boost, but it had the exact opposite effect.  On the advice of my doc, I had warned family members that if I was acting differently, tell me, in case I was not self aware.  Monday Butch told me I needed to call my doc.  I already knew I needed to.

 

A medication induced depression, complete with suicide ideation, no energy, self loathing, foggy brain, etc. is what I have been dealing with for the last week or so.  When I started telling myself that everyone would be better off if I was dead, that life was too hard, that I just couldn't see any kind of future--I figuratively slapped myself to reality.

 

I called my doc and was told to quit the meds immediately and that they would hospitalize me if I thought I needed it.  I didn't think I did since I am aware that it is the meds that have corrupted my mood.  

 

Yesterday I took the kids outside and we flew kites, dug in the dirt, played on the swing, etc.  I put on a happy face, but I didn't get any joy out of it.  Yall know that isn't like me.  I feel so dead inside.  I had no idea a medication could do so much damage in so short a time.  The side effect I had is listed as a side effect, but as uncommon.  

 

My doctor wants me to try another med to kick me out of it.  It is a anti-narcolepsy drug called Provigil.  At this point I don't want to take anything else.  I just want to get to some sort of balance.

 

I am so tired.

 I hit my 6th month anniversary on my birthday, December 16th.  I had a wonderful birthday, but I was slightly disappointed that I hadn't hit my goal of being down 100 pounds total at the 6th month mark.  I missed it by 5 pounds.  Yep, I let 5 measly pounds get me down!

Scales aside, my life is so different than 6 months ago and a complete 180 from a year ago!  This surgery and lifestyle change has been a lifesaver for me, literally.  A year ago I felt like my body was dying.  Here are some of the changes I've undergone, both positive and negative.

1.  Loss of 95 pounds.  I have lots of flab, lots of flaps!  Lying on my bed, on my back, I lift up my leg and everything drops.  I am going to have a large amount of hanging skin/flab everywhere.  My large panniculus is a big flabby flap that pretty much prevents me from wearing pants.  My love handles are literally love flaps.  I have a large fat pad above my butt on my lower back--I don't have a butt--and that fat pad is deflating and so I have the beginning of a butt flap!  I have to arrange my big floppy pannus in bed and when I walk.  It isn't fun.  On the pannus grading scale I would be a 4-5, hanging down my thighs to my knees.  It will definitely have to be removed sometime in the future.

2.  Clothing--from 6X to 3-4X, depending on the cut of the item.  I haven't bought anything new except 4x bike shorts (that are too big now) and a new bra.  I am literally walking out of my clothing.  My blouses, which used to fit snug, fall off of my shoulders.  My caftans are so large on me that I flash my husband unintentionally.  My skirts, which have elastic waists and drawstrings, must be cinched up as tight as I can get them so they don't fall down. I'm seriously considering visiting some thrift stores for some new to me clothes after the holidays.  I have a sewing machine, but some of my stuff probably wouldn't look/fit right if I took them up, especially since I'm not a seamstress.  I also don't know whether to pass on my clothes or pack them in a box.  I am NOT going back to that size, ever!

3.  My mobility has improved drastically!  I will always have rhuematoid arthritis, but losing weight is making it less severe.  A year ago I couldn't even walk down the ramp from my front door to the car.  I had to be wheeled.  6 months ago I could walk up and down the ramp, but was totally spent afterwards.  NOW I can go up and down with no problem AND I can walk to my daughter's house down the road and visit with her and my grandkids (I have a new grandson, James Dean, born Dec. 5, 2011!!) and then walk back home!  When I get back home I am still able to get around!  Before I would have to recuperate for a couple of days after leaving the house for even a short doc appt.  Of all the positive things, gaining my mobility back is one of the best!

4.  My lab work is good!  I do not have high blood sugar or cholesterol.  My hair isn't falling out as bad and I actually have a few new hairs growing in.  I do find it tedious to take so many supplements on a daily basis, but that is a small trade-off for the positives.  I take Centrum Silver vitamins, Citracal calcium petites, dry vitamin D, fish oil (fixing to try krill oil), iron, B-12 injections, Biotin.  I also take several prescriptions--Enbrel injections, pain medication, thyroid, bipolar meds, anxiety meds, allergy meds, asthma meds.  My blood pressure is only bad if I eat salt.  

5.  I'm going to talk about digestion issues because they are such a big part of this process and newbies need to know what they can expect.  I am aware everyone has individual experiences, so I can only tell people about my experience.  I became lactose intolerant.  I can't drink milk without very adverse effects.  I mean pooping my pants effects.  Yeah, not pleasant.  I don't have to take the anti-gas meds very often anymore, but I have noticed that if I eat too many carbs I get bad gas and it isn't pleasant gas, either.  I am very definitely mal-absorbing fats--the proof is in the toilet.  Eat bacon and it looks like I poured a half of cup of grease in there.  The color and consistency of poop matches what Dr. Oz says about poop with digestive problems--light colored and looser than normal.  It also has a different odor that is not easy to get accustomed to--like a sour/acrid smell.  It is NOT a pleasant smell and about the only thing that gets rid of it is ozium spray.  

6.  Diet is always a hot topic on OH.  I'm not going to go into great detail, but I will say that I haven't thrown up in awhile.  I was throwing up about once a day.  It is strange...some days I eat my portions and feel like nothing is different.  Then another, like yesterday, I am eating my scrambled egg and it just doesn't set right and my pouch feels tight and uncomfortable.  Same food, same portion size.  I never know from day to day what I'll be able to tolerate.  My favorite meals are crock pot stews--usually vegetable beef with LOTS of veggies.  I eat a LOT of beans.  Chicken, pork, beef, fish.  Tomatoes.  Pickles.  Cheese.  Coffee & tea.  I can't tolerate noodles or pasta.  They gum in my pouch and cause pain.  Not worth it.  I can eat bread, but of course I limit refined carbs to about 30 grams a day (I don't limit carbs in vegetables).  I ate yogurt & cottage cheese before surgery and right after, but now I don't care for them.  I LOVE spicy foods and put habanero or jalapeno on everything.  The only caloric drinks I have are V-8 and protien shakes.  I don't do a daily shake anymore---I will make a chocolate shake and freeze it for a sweet frozen treat.  Many times I will blend frozen chocolate shake with coffee ice cubes for a mocha frozen treat.  Strawberry protein shake blended with frozen strawberries & freeze is also a good treat.  I often add a packet of vanilla Carnation instant breakfast for a more creamy texture.

Well, that's about all I have to say to update at this time.  Happy Holidays everyone!!

 Eight weeks after surgery and life isn't too darn bad.  I'm losing weight, but it seems to be coming off in a staircase fashion---nothing for a few days, then bam!  4 pounds gone, then nothing for a few days, then again 3-4 pounds.  I think my weight loss is probably about average.  If I could exercise more I am sure it would be quicker (or I like to think so).

My stats as of today---weight 391.  That is a total loss of 65 pounds.  Since surgery I have lost 36 pounds.  That is an average of 4.5 pounds a week.

The greater victory is the amount of inches I've lost.  Well, not sure if I've lost them or if they have just traveled south.  My body looks like a candle figurine that has been left in the heat.  Melting...yes indeed!  I haven't measured in 3 weeks (I'll work on that tomorrow), but last time I measured I had lost 9 inches around my waist.  I am wearing clothes that I had grown out of and have lost down from wearing 5-6X to 4x.  Yay.

I had a Non-Scale Victory this week (NSV)  I haven't went to Walmart in probably 6 months for two distinct reasons--I am sick of being the circus sideshow freak fat lady (other super morbidly obese people know what I am talking about) and the cart I must ride (due to both my weight and severe rheumatoid arthritis in my knees & ankles) was a darn tight fit.  I basically had to wedge my massive carcass between the steering mechanism and the back of the seat.  And, on top of that, the bottom of the hard plastic seat curves up, digging into my thighs.  It was not a comfortable ride at all and even a short shopping trip left me in intense pain.

So my daughter coerced me into going with her and my 2 year old granddaughter.  Reluctantly, I agreed.  I was absolutely amazed at my body when I sat on the cart.  I had at least 10 inches from the steering to my belly!  I had PLENTY of room!  OMG my daughter and I both did a little celebration.  The seat still dug into my thighs, but at least I could adjust myself, something that was impossible before.  

I know these are small victories, and I know better is to come, but I am really happy about seeing some signs that the surgery is working as it is supposed to.  I did lose 38 pounds during the year before surgery, but it was excruciatingly slow and painful.  I had to struggle for each and every pound.

My diet now is pretty decent.  I have no foods that are officially off limits.  I do not do refined carbs or processed foods.  I utilize my crockpot constantly.  I am not drinking protein shakes.  I am eating meats, fish, dairy, veg & some fruits & some whole grains.  Fats go right through me (which guarantees no constipation problems!).  Some meals I feel as if I never had surgery, other times I take 2 tiny bites and bring it right back up.  I haven't dumped, but I haven't eaten any sugar, either.  

Where I used to crave carbs, now I crave spicy foods.  Today I made jalapenos filled with cream cheese & wrapped with bacon baked at 400 degrees until the bacon was crispy.  Delicious, high protein and completely allowed on my plan.  It wasn't spicy at all to me.  Last week I had spicy Mandarin chicken from our favorite Chinese place (sans rice).  No one else can handle the heat from this dish, but it seemed barely hot to me. Before surgery there is no way I could handle those tiny serrano peppers.  Now they are like pickles.  It was amazing and I had no problem with it.  I can sure handle craving hot food rather than carbs any day!

 I just read the book The Success Habits of Weight Loss Surgery Patients by Colleen Cook.  It was a quick read, and I already knew about all of the information in the book, but it was nice to read the personal profiles.  There are common behaviors to successful WLS patients and I plan on keeping those behaviors in the forefront of my mind.

EATING: Successful patients ate three small, well-balanced meals and two – three snacks per day. Included 3 servings each of protein, vegetables, one serving fruit, two servings bread/starches and two servings sweets.   They do not drink during meals or within 30 minutes after a meal.

DRINKING: Successful patients drank water and did not drink carbonated beverages. On the average, patients drank 40-64 oz of water per day, 74% do not drink alcoholic beverages, 55% do not drink juices or sweetened beverages.  Do not drink your calories!

VITAMINS AND SUPPLEMENTS: Successful patients took daily multiple vitamins, calcium and iron if needed. 39% continued to take supplemental iron.  Get labs done at least annually!

SLEEPING: Successful patients slept 7 hours per night on the average. 76% rated their personal energy as being average or high.

EXERCISING: Successful patients exercised regularly to maintain their weight.  Average was 4 x a week for at least 40 mins. Patients reported exercise as a key factor in their ability to maintain their weight.

PERSONAL RESPONSIBILITY: Successful patients took personal responsibility for staying in control. 69% weighed themselves at least weekly. General feeling that maintaining their weight was up to them, and surgery was only a tool they used to reach and maintain a healthy weight. By weighing often and allowing themselves only a few pounds of leeway, patients stayed in control.

NOT SUCCESSFUL: In those patients surveyed who were not classified as successful, an absence of at least one or more of the six successful habits was found. The most common was lack of exercise, poorly balanced meals, constant grazing and snacking, and drinking carbonated beverages. In the entire number of patients surveyed, including those who have gained back part of their weight, 97% of patients viewed their gastric bypass as a success. The first postoperative year is a critical time that MUST be dedicated to changing old behavior and forming new lifelong habits. By identifying these six common habits of the most successful long-term gastric bypass patients, the doctors established specific guidelines for new patients to implement.

 

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 I'm now on a full diet.  The only foods I can't eat (that I've tried) are bananas and watermelon.  You'd think watermelon would be an easy food, but after only about 1 ounce my pouch hurts and I start burping and feel uncomfortable.  Not dumping.  I haven't dumped on anything, but I also haven't tempted fate by eating a high carb/sugar food, either.  I have been eating a little meat and chew a papaya enzyme in the middle of the meal.  No problem so far.  I find that I spit out more meat than I eat.  I just won't swallow tough, fiberous foods.  

The emotional aspect of it is the hardest.  Meals seem to end before they've really begain.  No comfort, no satisfaction.  I am just learning to get my comfort and satisfaction somewhere else!

Hope everyone is doing great!

 I have been trying for years to get under 400.  My highest weight (about a year and a half ago) was 456.  My weight has been fluctuating a lot this week, up and down 3-5 pounds, but not under 400 (yes, I know, stay off the damn scale).  I step on it this morning and what do I see...399!  Yes, I know 399 is still really, really fat, but this was a mental & physical barrier that I thought I would never get past.  I'm setting my next mini-goal at 375.  Only 24 more pounds!  LOL