9/12/03
Only 3 days to go. I will be at hosp almost all day Mon for pre-op tests, wait till the last minute! I am so excited.
9/15/03
Just got home from pre surgery testing. I passed all of them Yippeeee tomorrow at this time I will starting my new journey
9/29/03
feeling good little weak starting to understand how to eat again:) pain level low controlled by darvacet
10/03/03
did too much yesterday 2 doc appt. had to see social worker didn't get to eat when I should Nausea and pain levels up today
have lost 36 lbs in 2 wks. arthritis pain creeping back in
having a lot of trouble with neck where they tried to put in IV
and failed.
10/12/03
feeling much better I bought pottassium supplements and feel almost human again!! Branching out to other foods, so far so good, no pain unless I twist my torso really hard. i have much
more energy and motivation already!!
10/28/03
Had a check up with Dr. Rogers I don't think it went too well.
I'm having trouble eating and what to eat. Dr. Rogers gave me
the impression I wasn't doing well, I only lost 11# in the last month, so he says I can't be having problems eating. I don't know what I should feel like, I have a lot of nausea bloating
and bowel problems. I'm weak, struggling with my old friend Mr. Migraine daily. He scheduled upper GI next Mon. I'm not doing well emotionally, depressed, my arthritis pain is back
full blast. I'm just very confused and frustrated.
11/4/03
Went and had a upper GI done yesterday. Good news- everything
there is fine bad news- I still feel awful don't want to eat
nasty taste in mouth nausea all the time, lots of pain in
abdomen. I don't know where to go to get help.
11/10/03
My upper GI was great no problems. I did go to my dentist to
try and find out what this green spot was in my mouth. It is
my bottom wisdom tooth, which I had had pulled in Detroit in
1975!! (ripped off again) The tooth is infected and has to
come out, on to Oral surgeon. I'm scheduled to get it dug out
9/13/03. That's what has been causing nasty taste in mouth,
some of the nausea and why I have been feeling so bad. Too bad I couldn't get my surgeon to help me figure this out. I guess I'm expecting too much again. I'm reading a lot on C-pap machines, I've been on one for the last year, but my surgeon
never talked about it. I wondered about having it in the hospital, but he brushed off the question. I won't be going back to him. I don't know what most follow up care involves,
but no temp, bp,blood, doesn't look at belly, last visit I got
a lecture on how much it takes to keep a person alive that is in a coma on a ventalater and how bad any fat content in food
is for me. I give up I can do as well by myself without the
patronizing attitude. I am getting all my info from this and
other web sites. I'm still having problems with pottasium and
getting protein in. Trying to find drinks that I can get down.
I'm whinning too much, but I really feel lousy.
11/18/03
Doing ok had infected wisdom tooth dug out last week, so having
drainage yet, taking anti-biotics and pain pills. Nausea is still a problem, back to liquids due to tooth. Tried to get
nerve blocks for chest wall pain, it turned into a real mess, they couldn't find where they needed to be so just put needles
in me numerous times and then quit. Lots of pain, I won't go
back for any more of that, I'll deal with the chest wall pain.
Weight is down to 275, I'm having trouble still getting protein
down. Having knee surgery to repair torn cartiledge. I'm still taking pottasium, having heart palp, would be hard to figure out what is causing what at this point. Isolated in the
house too much pain to go out. I'm trying to get a positive
attitude. I had Medicaid and Medicare, I was assured by Dr.
Rogers office that the surgery would be covered. I received a
bill today for Dr. Rogers saying Medicaid had refused to pay it.
I called Fawn and I think with a lot of effort on her part
(bless her heart) it was a mistake and she will get it straightened out for me. I'm still struggling with depression
12-16-03
Weight is down to 260. I've been feeling much thinner, clothes
are looser. I visited with family over the weekend, lots of
pictures taken. I didn't shy away like I usually do. I'm not
very impressed with how I look. I can tell I've lost, but I still look huge in the pictures. My eating schedule got all out
of whack. I didn't eat things I should not have, but I didn't eat like I should have. There were smokers and SO MUCH perfume.
I'm feeling really lousy, I'll have to go back on anti-biotics.
I was impressed with how easy it was to not eat all the fudge,
cookies, pizza, etc that was there. I don't feel deprived.
I was having too much trouble breathing!!
I still can't stand or walk for too long, my knee and ankles
just won't do it. I keep wondering how much better I would be
if I could exercise. Maybe soon I will be able to. I'm having
so much trouble with fungus infections, fatigue and mental confusion. My neck from the attempted IV insertion is still
pretty bad, hurts to turn head and hurts if it is touched there. I still can't do much, but I push it as much as I can.
I HAVE to keep moving.
12-31-03
I am just having such a hard time with the emotional part of this. I'm still losing, down to 245 by my scales. I was back
in the hospital over Christmas, went to er with chest pains, I
was having a lot of trouble breathing. I was in overnite but
thank God it wasn't another heart attack. They did another
heart cath, it was ok. So I still don't know why this "chest
wall inflammation" flares up like it does. Fighting sinus
and ear infections still. Just having one longgggggg pity party!! I'm angry most of the time, I don't know where to go
with these emotions now, can't eat. Still in a lot of pain
in my back and knees. I talked to surgeon about not getting
enough protein in and he told me to not worry about it, I didn't
need to drink protein drinks. I'm glad the weight is coming
off, but I guess I thought some of the other medical problems
would be better by now. Now I'll just be skinny and in pain.
I am praying I can get a better handle on my life in the new
year.
1/8/04
Had a consultation with a colon specialist WOMAN doctor today,
it went as well as those things can go LOL I've been having
more/different problems since last year. I was bleeding really
bad from back there and that is how I was referred/connected
up to the surgeon that did my RNY. He did colonosopy and told
me it was rectal prolapse and nothing could be done. That was the end of that subject with him. I've been living with a lot of
pain, stuff hanging out back there, enema's weekly if not daily.
I went to family doc, he looked, and referred me to this doc.
She isn't completely sure, so has set up another test for me.
It sounds like a barium enema, they put stuff up there and then
x-ray me expelling it. Sounds like a lot of fun Huh?? I'll do
just about anything if it will help. I'm having a lot of trouble the last 2 weeks, EVERYTHING I eat, I get sweaty, clammy
lots of pain in middle and over to the right, liver area. I have nausea all the time, I'm pretty limited, can't do anything.
Feel very weak. Can't stay awake during the day, lots of naps,
very irritable, had to quit taking my wellbutrin, can't afford
to fill the scrip. Can't get samples, doc says he doesn't have any. My belly has swollen back up, gained 5# I'm sure it's fluid. Won't do any good to call surgeon, he acts like all of
this has nothing to do with him. I still can't understand a lot
of what he has told me in comparision to what I read here. The day I was sent home he told me I could eat anything I wanted???
He has maintained that, when I tell him I'm having trouble. He has never told me about any vitamins. I knew I would probable have more trouble with foods than others, but I thought it would be better than this. I still can't eat any fruits, veggies are very difficult, can't keep protein drinks down. I just feel so sick all the time. The surgeon has done no labs since surgery, so I don't have any idea if things are ok or not. I'm so confused! I have lots of questions about some of the meds. I ask questions about the time release drugs, the surgeon tells me there is no problem. I asked him about a medic
alert bracelet, and what I had read here, he told me there was
no reason for a bracelet. I'm still having problems with my
chronic sinuitius (sp) can't get it under control, what about
the OTC stuff I'm taking? Some of these pills are huge, if I ask
the other med providers, they say "what does the surgeon say"
and I have to say he says there should be no problem with any
of it. I don't understand, if the pain, bloating, unable to eat
so many foods, etc isn't related to the RNY then what IS causing it? How do I find answers?
1/14/04
I had appointment with PCP yesterday, I was referred to him by
my surgeon and just started seeing him after WLS surgery.
Yesterday I tried to push and get some of my other health issues adressed. I was told I should of lost weight the RIGHT
way by diet and excercise. He told me that I didn't have the
two heart attacks that I was told I had, and I never needed the
heart bypass that was done??? I had felt that gut feeling that
something wasn't right with this doctor, but he was supposed to
be a great doctor, so what do I know - right? He kept telling me over and over I needed to see a shrink, and I asked why he
was telling me that, did he think I was making all this up or it was "in my head"?? He got pretty angry then, and told me again I needed to see a shrink to learn how to cope. I told him
I was in the emotional state I was in because for the last 4-5 yrs I've been treated like it was all because I was fat, or in
my head. I definately will NOT be going back to this guy. I should of trusted my gut instinct to begin with. Thank God my
angel Elizabeth H was home and willing to let me vent, she gave
me good solid advice. She is right, even if I am crazy(???) he had no right to treat me or talk to me like he did. I have all
kinds of med reports to confirm my complaints, but he told me
that I had to learn to live with them, and I know that is absolutely not true. He told me my vertigo will go away when I
lose all the weight, carpel tunnel will go away, lots more, but it all sounded right along the lines of "it's all because you're
fat". Of course we all know a lot of these health issues are
caused/made worse by obesity, but I don't think Ra, OA are
CAUSED by obesity. I can't believe the encounters I've had
with the medical profession in the last few years. I was also
informed that I no longer was to go back to the surgeon, he had
done his job, he was done with me!! So that just confirmed what
I knew, I'm on my own to figure out how to get through the rest
of this journey, THANK GOD for this web site, or I would have
no information to go on with.
1/27/04
Still not losing weight. I have cut my food intake way back,
2 meals a day, 1 apple at night. I just read something about
Splenda, I have been trying different things, all of which
contained Splenda, maybe I need to change that. I tried BB
Ice Cream with splenda, made me pretty sick. I tried Wendy's
chili, made me sick. I am still so limited to what I can eat
and not get sick, I wonder if this is ever going to get better.
Having MAJOR bowel problems, just can't go, lots of cramping and pain. I'm going to try a duiretic today and see if the
bloating and swelling in belly area is fluid. This is such a
puzzle. Sodium makes me sick, any acid foods, tomatoes, oranges, no spices, no sugar, the artifical sweetners don't set too well. I take my Protonix faithfully, if I don't the old stomach gives me grief. My blood pressure is staying high even
on top of the BP meds which had been controlling it pretty well.
My allergies and sinuses are really acting up, I need to take a antibiotic, that would calm them down, but that is so hard on my stomach. The snow -12 in- is going to keep me in the house for a while. It is really cold outside today. My depression is a little better this last week, I'm not crying all the time.
I wish I could get a better grip on the food issues. I wish I
knew how to cook!!! LOL
a while. The maintence man totally plowed my van in, I just am
not able to shovel all that out.
2/21/04
Wow reading about Darlene passing away yesterday made me go to places I haven't been for awhile. My mom was somewhere 500-600# for the last 5-7 yrs of her life. She couldn't leave the house, she couldn't take care of herself. She had always been heavy, but when my dad died it went bad real fast. I remember when I was small we had to do almost all the work, she was not able to.
She was a very unhappy person. I was visiting there, and she fell in the kitchen and refused to let me or my brother call for help. I thought we were going to pull her arms out of their
sockets trying to get her up. I SWORE I would NEVER get that big!! I didn't, but close enough. Now I understand the process
of how she got there so much better. A combination of injury,
arthritis and illness almost got me there. My mom stayed so doped up the last yrs of her life, she couldn't even balance her
own checkbook. This woman used to be a bookkeeper. She was having stroke after stroke and the doctor she saw just gave her
more antidepressants and pain pills. She was only 62 when she died. I started seeing myself following in her footsteps. I can't get any resolution with my medical problems, I have been
told I have no reason to be in pain!!! I fought and got some
tests done with I thought answers, only to be told "tests are
a matter of opinion"??!! This surgery, even through the unconventional way I got to it, is one step in my journey to find answers. I refuse to live on pain meds, (when I can get them) there has to be another way. I have no doctor at the moment, I'm trying to find one who will believe me. I think I'm losing again. I'm having such bad problems with my bowels, if I can get them to work again, I think I can continue losing. I want my sense of independence back, I want my sense of humor back, I want to be in some kind of control of this pain. I want my hands to stop hurting so bad and work again!! Sometimes I really don't understand the major plan here, I have
nobody except my precious puppies, Darlene had a whole family and wanted to live so badly, so I feel guilty about my life, I'm not giving anything back in any way shape or form. I can't even be out in public around people because of my allergies. I feel like I have no purpose in life at all. I just struggle through one day at a time trying to figure it all out. Geeez how depressing this all it!! Honest-- I used to have a really good sense of humor that was in the gutter most of the time!!
LOL
2/25/04
Saw surgeon yesterday. Made my usual complaints. His office scheduled me for a upper GI. Had that done today, the doc there told me I have a ulcer at the staple line. I have been having
a really bad time with the pain and BM's. I have no idea what will or will not happen next. I've had a long history with stomach/digestive problems. I've been on one or another stomach
pill for 4-5 yrs. I've had problems with H.Pylori in the last few years. I see the surgeon tomorrow. I hope he's going to have some idea for me to get relief. I'm pretty upset about this, I'm afraid I'll be left hanging again.
11:48 AM Well left hanging again, surgeon's office just called and had to reschedule my appt. He's 2 surgeries behind at the hospital. Don't see him till Mon now. This is with begging them I am in a lot of pain and need some kind of solution with bowels. I've done 3 enemas in the last 24 hours and just getting a little bit out. The pain is bad, feel so sick, shakey
foggy thinking, everything I eat or drink causes nausea, sweating, pain and cramping. I just feel so stupid, if I had researched WLS like I should have, I'm pretty sure things would be different. I had no real idea what I was getting into. I was
just so worried and sick, when the surgeon kept telling me I needed surgery quick for the Barrett's esophagus. He told me this surgery would fix that, the hiatial hernia and I would get the weight off. I didn't know that afterwards it would be up to me to figure out what to do next. I am soooo stupid.
Future Monthly Update
3/1/04
Saw surgeon today. He confirmed that I have a ulcer where the pouch meets the intestine. Added Pepcid AC to my Protonix for 30 days then repeat upper GI and then surgery again to remove the bad parts. I am not a happy camper. With my history, I don't think 30 days will heal this, but I'm hoping I'm wrong. I really don't want to do another surgery, but do I have a choice? And I still don't have ideas on how to get my bowels to start working again. This is a dark day for me. I'm glad to finally know what has been causing some of the stomach pain. I posted on the main message board, but got just 2 replies, but another lady did a roll call and got 79 replies. Some support board.
3/5/04
Went to Community Health Center yesterday. They had made appt with nurse pract. I had been there before through 1999 and 2001
and then once in 2002. I told them all that, cause last time I was there, they told me they didn't have my records. So this nurse walked in with attitude and says "You have been a patient here, you just haven't been in" I didn't say anything. Then she wanted to go over who has been my doctor since then. Very impatient person, made things harder than they had to be. I gave her my list of hosp/surgeries, med list and list of diagnois. She told me I had to cut that down, LIKE I COULD. I told her major complaint that day was the pain and non-working status of bowels. I had brought in copy of Upper GI report from last week. She started pushing VERY hard on stomach area, very painful to me. She didn't examine the lower abdomen at all. She told me I needed to make appt with clinic doctor (duhhh) in 3 weeks. She did give me a 5 wk supply of Protonix, drew blood for CBC,Com panel, TSH, Liver, did a urine sample. I'm sure that all the blood work will be fine, just like it always is. I don't understand how I can feel so sick and the blood work is always fine. She also asked me when I decided I had Barrett esophagus?? So I can see I'm going to get a long way with this lady, she doesn't believe anything that comes out of my mouth. I have been on the phone this morning and made a appt with a gastro doc at one of the University cross the river. I called two others, but 6 wk waiting list. This appt for next week, I asked about the WLS- ok, Ia Medicaid-ok, Medicare-ok, I hope this doctor will help me, I'm just wore out. I also got a bill from the hospital where I had my WLS, well actually from collection agency, but of course no date, and I have not received any bill straight from hospital. This bill is from 10/1, they changed collections agencies, so they are sending new notices out for all the old bills. I had no income or insurance at that time, but when I did get Medicaid it was retroactive back to this time. Of course I had contacted the hospital when I got Medicaid and covered all this, I had been told all the bills had been taken care of. Now this, it's too late for Medicaid now, why didn't they submit this bill?? Now they expect me to pay it and I just can't. I got my disability check yesterday and if I pay the rent and utilities, I have $100 left for food, medicines, etc. The property taxes on the trailer are overdue, they will sell it at a tax sale in June if I don't figure out how to pay them. I'm just so tired.
3/27/04
I had upper GI done last Thurs. they wouldn't tell me anything at all. I see the surgeon Mon, I hope I get some answers from him. I'm still not losing, nothing, nada. Haven't lost a pound since Dec. I went and saw a sinus specialist 2 wks ago, he did a cat scan of sinus, I got to see it, what a mess. He tells me he cannot understand how not ONE doctor caught this before now with all the sinus infections, etc I've had. The sinus cavity on the right side by bottom of nose never developed since birth.
My nose cartiledge looks like a road map, it's so crooked. He also said it was irresponsible for the docs to give me a CPAP machine with my nose like this, there is no way it could of worked. I have seen all kinds of docs, ear, nose and throat, etc about my sinus/allergy problems, they would just hand me another scrip for antibiotics/allergy meds and send me on my way. I'm scheduled for sinus surgery on 4/7/04 but that is depending on what the WLS surgeon is going to do. I'm so glad someone finally found the problem, but I'm also sad, why did it take 51 yrs for just ONE doctor to take the time - do the right test to find the problem. I guess this would explain some of the major ear infections I had until I was 5 yrs old and they took tonsils out. According to my mother I am extremely lucky she let me live that long!! It will be interesting to see what kind of difference this will make in my life, my hearing problems, breathing problems, etc.
Future Monthly Update
4/27/04
It's been awhile. The surgeon that did my bypass has refused to see me anymore, even sent me a certified letter to tell me.
I pushed too hard, tried to ask a lot of questions. The last upper GI I had HE says the ulcer is healed. My question, why did I get an ulcer while I was taking Protonix? It's sure not my diet, I can't eat half the foods I read other people are eating. He told me "I'm not going to play your nutritionist".
He also had a lot to say to me concerning "you people", if we would learn to eat correctly (ex.) a salad without a whole bottle of salad dressing on it, then "you people" wouldn't have to have this surgery!! He was very peeved when I told him I had gone to a GI doc, told me I had a perfectly normal colon, (so why couldn't I have a bowel movement without using a enema?)
He was very rude and treated me like a idiot. I quietly got up and said I had had enough of this and left the office. So today I saw a family practice doctor in the local clinic for poor people, and she informed me no doctor was going to have the time to sit down and go over all my chronic illness with me.
I asked her who would I go to with all the questions I have about my stomach/digestive problems and she told me, my CBC was fine, just take the Protonix and "see what happens in a month or so". Weeks before my WLS I was scoped and told I had gastritis, Barrett's esophagus, Gerd, hiatial hernia, microscopic colitis, a collapsed valve in my intestine, rectal prolapse and inflammation throughout my digestive system. All I know is since the surgery I am nauseated all the time, diet is very limited, no preservatives, no spices, etc. It feels like there is a furnace in my gut, and where the pouch is, is as hard as a rock and has been since surgery. I feel sick all the time, weak, have trouble staying awake for more than 2-3 hours during the day but don't feel like I'm sleeping at night either. I do have sleep apnea. At the clinic this morning, the doctor kept saying "that's not my area of expetise" - "I can't advise you on that" but then told me not to pursure a GI doctor!!?? I also know the surgeon I had reads this web site, he confronted another one of his patients in his office about something she had written on this web site. I really don't know where to go now, these records follow me and are completely different than what I was told/not told by this surgeon. So now I have been (per the surgeon) completely banned from a whole health system in my area. Must be nice to feel like a God.
Future Monthly Update
5/21/04
Not much has changed. I'm still having a lot of trouble with my stomach/ulcer. I'm trying to find a PCP, not having any luck there either. I saw a new arthritis doctor this week. After he moved my hands and feet around a little, announced that he is sure I don't have RA. When I asked about the pain and swelling, he replied well that's invisible isn't it. Told me to take Tylenol for pain, and come back in 3 months to see his PA. He sure took me seriously didn't he. He kept asking a
lot of questions about my WLS surgeon and why he won't see me anymore. His statement was "they don't do that kind of thing unless you owe them money or refuse to do what they say" How do you defend yourself against that? He also told me how stupid I was to have my surgery done by anyone in my city, instead of across the river where he is.
5/27/04
Finally had to courage to post on the main board. Got some support, that helps. I guess Mon I'll get on the phone and try calling some more of the WLS surgery offices, keep trying to find a doc familiar with RNY. I just hope my stomach holds out long enough. I wish I had the money to go buy some OTC meds to help with the stomach pain. I would give anything to be able to go back to work!!!!!
Future Monthly Update
6/17/04
Well I'm 52 today and have received quite a few birthday wishes from my obesity help family. That is so appreciated. I have seen 2 more PCP's, I ER doc, and a GI doc since I last posted.
The ER doc was wonderful, treated me very well. I went if for sharp stabbing hot pain in lower right abdoman, he did chest x-ray, blood work, urine and actually examined me. Couldn't find anything wrong. He thought it might be a kidney stone, but nope. He talked to me a lot, asked if I wanted to try an enema to see if that would help, I did, and the nurse kept saying something is wrong here, could hardly get the tube in and kept hitting something inside, the water just drizzled in. I've been saying there is something wrong there. The enema helped, although I had just done one the night before. The intensity of the pain went down. He recommended I get appt with GI doc.
He made other statements to me that really validated me. He doesn't have a private practice tho. The GI doc told me 5 times how stupid it was for me to have this surgery, he asked I told him I had a RNY he started talking about the missing?? part of my stomach (I still have all of my stomach) there is no chance of asorbtion problems after this surgery, I can take any medication I want to. No exam, didn't look at any of the records I had brought in, told me it was JUST a motility problem and I (despite my having told him 3 times that fiber makes the problem worse) could do one of three things, have part of my colon removed -- find someone to pay for the Zelnorm
he says I need -- or eat more fiber and no there would be no problem with that I can eat any kind or as much as I want. This doctor claims the WLS clinic that is connected with his office sends people to him all the time for strictures, etc.
He had a sarcastic attitude. Oh and he said if he was forced to -- he could order a test (just to prove to me) that would require me to take 24 pills with markers in them with x-rays done to prove there is no blockage!! But he doesn't feel that test is necessary. He didn't order it. I won't be going back.
I've talked to the local disability advocate office, and confirmed with her that there is no way for me to get help with
my prescriptions. I have applied for Section 8 rental assistance, but I have to move out of the city, stay in the same county but move out of this city to get that assistance. The waiting list is about 4-6 months. I own a 1965 mobile home that is in a trailer park, can't be moved per Iowa law, I don't know how I can even FIND a rental that will take me, my 3 dogs
(2 poodles and 1 chiuahua) and section 8. Then of course the question of how I can move, financially and physically. Money for security deposit and utility deposits. AND the money I get from selling the trailer will get me cut off the $29.00 in food stamps monthly and human services pays the $60 monthly fee for my Medicare Part B. It feels like every direction I turn in I hit a wall. The disability advocate suggests since I have to move I move to another state that has better health benefits under their state benefits. I have no idea how to research that, how do you find rentals, cost of living, pet acceptance. etc. I am feeling just totally overwhelmed. The manager of the trailer park where I have live for 13 yrs is pulling stuff.
Kids are playing baseball within 20 ft of my van and house, when I called to complain she told me I was being paranoid, they weren't going to hit my stuff. They hit a pop ball and it hit a proprane tank 3 houses down from me. I don't post much because I don't feel I have anything positive to say. I have contacted a attorney's office to look into malpractice suit. Why would I have to file a lawsuit to get the medical care I need? I feel like all I do is whine. My inflammation levels are really high, my joints hurt so much, it hurts to walk. I just feel so lousy most of the time. I read other people's posts about all the things they are doing and I am so jealous.
The one PCP I saw told me NOT to go see a GI doc I would just be wasting their time, none of them has the time to TRY and figure out what I'm saying is wrong with me. She keeps giving me scrips (even tho I whine regularly about no drug coverage and not enough money to fill them) for drugs that horrify me when I get home and read the side effects. I have collected 13 scrips in 4 months that I can't fill. She also gave me Ery-tab
(antibiotic) to take for chronic sinus infection, I've been on it since April, just can't shake this infection. I found out that this drug is timed release last week, so I called her to ask about it, and was told there is no reason WLS patients have any problem with timed release meds and she is sure it's helping me. So that's why I still have the infection after 3 months??? (sorry - sarcasm ) I have lost 120# by my scale, which I am very thankful for, but I still am sick all the time, the bowels don't work by themselves at all anymore, I have no life, and I really see just more of the same down the road.
Future Monthly Update
July 2,2004
This is a terrible thing to say, but I feel I need to document stuff here in case. This past Mon I went to hosp to start the marker test. They took 2 lower abdominal xrays and gave me a clear capsule filled with tiny plastic pinwheels. I was to eat no red meat, no laxatives, no enemas, stop the antibiotic, and come back on Fri for follow up xray. I was in bad pain Wed nite, Thur afternoon I couldn't stand any more, I went to the ER of the hosp that was doing the marker test. Main question there, "who told you to come here"?? I told them about the test and that I hoped it wouldn't be a complete waste, but I needed immediate help (enema) to relieve the pain and pressure. It felt like my stomach was going to explode. They did 4 upper and lower abdominal xrays and drew blood. 3 hours later the er doc came back and told me there was no blockage, very little stool in there, and blood test was great. I also had a temp of 99, my normal temp is 96.7 so I was running a temp, but not according to them. The er doc told me he couldn't contact the GI
doc who ordered the test because GI doc wasn't wearing his beeper and without talking to him there was nothing else er doc could do for me. Sent me on my way, in severe pain. This morning I called gi office to explain. The gi doc called me just a bit ago, and told me the test was no good, because the proper procdures hadn't been done. He told me there was nothing else to offer me except to have my colon removed (what????) and for me to live on a liquid diet. Also he would only be practicing at this office for another month. So why did they schedule me with him to begin with!!!!! I have done a total of 9 enemas since 6pm yesterday trying to clean out my bowel. A little at a time is all I can tolerate -the pain and pressure.
I got back on the phone and made some more calls, I have a appt with a dr whose office says they see people like me, that are having complications after WLS. That appt is 7/16 I am going to pray I will get help there. I am sooo angry that the er sent me home yesterday with no help at all. Somehow this month I have to find a way to buy protein mix, I'm not able to eat enough. I wish the pain would let up. I read how well others are doing, and I just get so depressed. This was supposed to help me regain my life.
July 7, 2004
Ended up at another ER room last Sat. They took blood and did an xray, I sure wish I knew what an xray is supposed to tell them. This doc had no idea either. The pain has been really bad, can't stand up straight. I came home and took 60mg of Pepcid and put the heating pad on my belly. I can't believe it but it helped!!! YEAHHHH I've been taking 40 mg of Protonix or Achiphex whatever I can get samples of for about 2 years. Before that I took 40mg of Pepcid a day for about 3 yrs. The surgeon told me Pepcid would not protect my stomach, so he switched me to Protonix. I know Nexium, Prilosec, Prevacid did nothing for me, but the doctors wouldn't believe me. So I've been taking 40 mg twice a day with 40 mg of Protonix and it's a lot better. I still have pain, can eat very little, but it's better. I have an appt with a doctor at a surgical center that does RNY on the 16th, I told them about the ulcer and the problems and they still said they would see me. I also have an appt with another GI doc on the 13th. I don't know what else to do but to keep butting my head against this wall, someone has to help me. I'm having major amounts of gas and GOD IS GREAT I've had diarrea!!!! Lots of cramping, feel really weak, water is very painful to drink, not getting even close to what I need to drink, but I'm doing the best I can. I have found out I can't do artificial sweetners, they make me have the sweats and chills, nausea etc. I can do regular popscycles, and I think I really need the fluid. The cold feels wonderful on my stomach. I'm so grateful I found something that helps, but I really need to get to the bottom of this. The Pepcid is pretty expensive for me. I want to feel well. I also heard from the law firm in NY, they can't find anyone within 200 miles that is willing to talk to me about my surgeon. I don't know what to do about that. I want to fight, this guy should not be able to get away with what he is doing, but I have to find a atty willing to fight too.
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Future Monthly Update
July 23, 2004
Had a stomach scope this morning. The doc told me that I have NOT healed from the bypass. I have lots of "ulceration" and he took a clotest. He told me to continue doing what I've been doing, taking Protonix and Pepcid and he wants to repeat the scope in 6 weeks. I'm trying hard to be positive here, but I've gotten sick taking these meds so how is it going to get better continuing to do the same. He told me he doesn't know why, I shouldn't be, but I am producing a whole lot of stomach acid. I had a abdominal CT scan last week ordered by the PA at this doc's office. I'm glad I'm not being told "can't find anything" again. I see him in office in two weeks, maybe I can get more information then. I've only lost 5 # in the last 5 weeks, I wish I could walk and do more to get more weight off. I had a wonderful surprise from Elizabeth H last week, I won't get into specifics, but she is such a wonderful person. Last week my AC, TV and computer all went down, the only one under warrenty was the puter. The rest I just have to do without till I win the lottery or something. I'm just exhausted right now.
Future Monthly Update
August 6, 2002
I saw the GI doc yesterday that did my stomach scope. His quote "it's a mess in there". I am negative for H Plyori, which is good. The doc was really distracted, couldn't remember anything about my case, thought he had done a dilation, till his nurse corrected him. Told me to continue taking Protonix once a day and Pepcid AC twice a day, I asked if I could take the Pepcid 3 times a day since I'm having bad pain around 2-3 pm everyday, and he said ok. He left the room stating he would be back in 30 seconds, he never came back. The nurse practioner stayed and I had more questions. I asked if I could start taking omega 3 supplements, would that irritate the stomach and she gave the ok on that. I asked why the digestive problems felt better when I took the antibiotic Ery-Tab and she said they will prescribe it for chronic constipation problems so I could go ahead and take that too. (glad I asked!) She told me the Cat scan of my abdomen was normal (???) no inflammation, nada. This upset me, does colitis go away by itself? Does a prolapsed valve all of a sudden fix itself? I don't understand how there can be soo many different results on the same problems. I do know my bowels are not working again, evidently the stool softners aren't working anymore. They want to do another stomach scope in 1 month. I'm doing the best I can. I just feel sick all the time, the pain in my stomach is a little better, but I am feeling starved all the time, never feel full, and everytime and everything I eat makes me feel sick for at least an hour. I've stopped losing again, can't walk much, my joints and back are really back, lots of pain, and I can't get pain meds. The depression is bad, but I have to say a little something about my angel Elizabeth Hiatt, I won't tell what she did, just that it's totally in character for her, and she made a big difference in my daily life recently --God Bless Her -- I am so blessed to have met her.
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Future Monthly Update
8/21/04
Not much new on the stomach part. Pain is a little better, but still won't let me sleep or lay flat. I'm sooo tired of whinning. I just want to feel better. I'm eating lots more melon instead of apples, see if that makes any difference. I don't know what to try, there's so much I can't eat, it just burns my stomach so bad. I had something wonderful happen today. The manager of the trailer park where I live has been telling me I have to paint my home, I don't have the money and I'm sure not able to do the work. I submitted an application to a group called Paint-a-Thon I got accepted and they painted my trailer today!! It's all free to me. They did a wonderful job my home looks so nice. Even they said they didn't understand it, my home is one of the best ones in the park. So I'm not being paranoid!! Now if I could find a solution to my stomach and bowel problems. I started taking fish oil supplements hopefully they will work on the inflammation problems. I'm also back on antibiotics so that helps me feel better overall.
Future Monthly Update
9/18/04
I'm not doing too good about updating, I just passed my one year anniversery and would of forgot completely but for the nice people here that sent me well wishes. I'm scheduled for another stomach scope on the 24th. I ran out of Pepcid AC last week, so I'm taking Protonix and Aciphex, the pain isn't too bad right now, but it's still there. I'm struggling with my allergies and asthma right now, lost my voice, my head feels like it's 10 times it's normal size, my throat and mouth are just raw, hurts to put my teeth in!!! I'm a a standstill on weight loss, I'm at 185. My blood pressure won't stabilize, it's running high even on top of my meds. I saw the foot doctor about my foot that's swollen and extremely painful, he says it's fluid build up around the toe joint and he's not sure why.
He wanted to do a cortisone shot, but I've had severe reactions
from those shots in the past, so I said no. He isn't offering any other solutions. It's very hard for me to walk now. My back has gone back into spasm, lots of pain there. My knee that was operated on last Nov is flared up, at least it's the other leg from the bad foot!! LOL I can honestly say none of my health problems have dramatically improved since I have lost
this weight. I was really hoping to get off some meds, but it doesn't look like that is going to happen. I just wish I could get some kind of resolution to the ulcers and be able to eat better foods than I can now. I'm very angry over the fact that if I was better off money wise there would be a lot more options open to me. I'm not sorry I had the surgery, but I am
disappointed that my health hasn't improved.
9/27/04
Had another endoscopy done on Fri as follow-up by the GI doc.
Nothing has changed, the ulcers are still as bad as they were.
I heard him dictating and he talked about surgery to cut some nerve in my stomach. When he came in the recovery room to talk to me he didn't say anything about that tho. He changed my meds. He prescribed sucralfate 4 times a day, Protonix 2 times a day and told me to stop taking Pepcid AC told me to start taking Pepcid 2 times a day. I asked the nurse and the pharmacist, but neither could tell me the difference between Pepcid AC and Pepcid. Just the Pepcid and Sucralfate cost me $129.00. I have samples of the Protonix. I was in a lot of pain after this scope. The nurse told me it was "just air". I've had 6 of these now and I've never had pain like this. I was in terrible pain for two days. But I was also eating Hall's Menthol drops. I have to wonder if they were hurting my stomach. I feel better today, but still in pain. He said he wanted to repeat in 4 weeks. I have not lost any weight for about two months now. I just found out I have lost 1/2 inch in height. My chronic sinunitis is really bad, my vertigo is bad due to the mess in my head. I'm struggling with food, not much I can eat, nothing I WANT to eat. The depression is at me with a vengence, I feel so sick all the time. If I sit down for more than a 1/2 hour I fall asleep. I still can barely walk, my toes/feet hurt really bad. The foot doc gave me a scrip for physical therapy, but I don't know how much Medicare will pay for and I sure can't. But I do remember how to whine!!!! Somehow I have to find a way out of this mess.
Future Monthly Update
11/10/94
I have some good news, I found a good rheumatologist. He actually has a sense of humor!! He sent me for a bone density test which was great, my bones are in great shape!! He told me to go back on prednisone, which all my other doctors had refused to prescribe anymore, due to the long term effects. He says prednisone is more like a cox-2 drug minimal effect on the stomach, he says he doesn't think it caused the ulcer or is stopping it from healing. I have been in so much pain, all my joints had swollen back up, I could barely walk, could just sit in the chair all day. The GI doc, now different story, I had appt with PA two weeks ago, covered all the same ground as the very first visit. She had all wrong meds listed that I had been told to take. End result of visit, she would talk to doc and told me to call in 5 days and talk to her. When I did that,
she said oh, we want to wait and see what the rheumy doc decides to do. I have been in major pain with my stomach since the last scope, I told her that at the office visit. I ran out of the Pepcid and carafate, no refills on the meds, even if I had the money to get them filled. She told me to just take the Protonix till she talked to doc. It's two weeks later now, I have left 3 messages for her and no call back. I have also developed a raging case of Thrush since my last visit to the dentist 3 weeks ago. I don't know what to do next, but I have to get some help with this ulcer and stomach pain. I've been seeing this GI doc for 4 1/2 months, spent about $300 on meds just for my stomach, had two stomach scopes and am still in the same physical condition as when I first saw him. Am I being too impatient?
I'm not eating anywhere close to how I should be, most of the
time it's just liquids, my mouth burns so bad. The GI doc is convinced the reason I have an ulcer is due to the prednisone, so I have a feeling when he hears I'm taking it again, he will wash his hands of me. I don't think the prednisone is the culprit. I don't know what to think anymore. I've only lost 5 # in the last 3 months, I'm barely eating, so I really don't understand that at all.
11/26/04
I had another upper endoscopy last Fri. Nothing has changed, pouch is still a mess. I've been off the prednisone for 7 weeks now. I'm in major pain all over. The arthrits doc told me to go back on the prednisone, but I haven't because the GI doc told me if I did they wouldn't see me anymore. The GI doc told me he doesn't know what is going on with me, he has no idea what to tell me to do next, he advises I try going to the "University". I saw my PCP's partner and got some medicine for my mouth, but still don't really know what it is. I did call and got a appt. with Dr. Gary Anthone in Omaha, he seems to have good reports on here. I don't know what is going to happen, but something needs to get done, I absolutely cannot afford to put out $250 a month in stomach meds that don't seem to be doing anything anyways. There has to be a solution.
Future Monthly Update
12/02/04
Ok, I saw Dr. Anthone today he is a really nice man, listens and is down to earth. He spent quite a bit of time with me. He thinks I should have my RNY reversed. I really can't face the idea of gaining all that weight back and I would just as sure as the sun will come up tomorrow. I don't understand though, even if I reverse I will still have all the same stomach problems. I had these problems before surgery, that's one of the reasons the surgeon recommended the bypass. So my choice is to skinny (well relatively)and be sick all the time, or be fat and be sick all the time. I have been saying for the last year, at least I'll be skinny when I die.
1/3/05
Not starting off very good. I saw a new GI doc last Wed. he's the head of the GI dept at a Univ in Omaha. They did a good history, ordered a bunch of tests that won't be all done till the 20th of Jan. I had another attack starting Wed night. The chest pain was really bad. I tried everything I could think of. I finally gave up, had to drive myself, the ambulance won't take you across state lines (all two miles away). They worked me up for heart (even tho I told them I was convinced it was GI related). My heart is fine,so they sent me home with no treatment. I knew I was wasting my time. The new doc told me I have esophagal spasms, but didn't tell me what to do about them. I have appt with PCP tomorrow if I can get there due to weather.
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June 16, 2005
Haven't posted in a long time. I'm just staying so angry at the medical people, it's hard to write anything positive. To make a very long story short, the latest GI people I've been seeing have decided I have Crohns, Gerd, esophagual spasms,
hypertensive LES, and I thought (silly me) believed me about the pain I've been in. Two weeks ago last appt. the PA told me I just need to get out more and socialize. They have got me on some meds that help, but the pain at times was unbearable. I've been admitted from the ER 5 times in the last 6 months. They have to make sure it's not another heart attack. I did see my cardio doc last Oct. they did a bunch of tests, stress, etc and when I saw the doc 6 Months later, he told me I've had another "incident" there is new damage on my heart, but "nothing to worry about". Anyways, lots of tests later, part/or maybe all of this is due to food "intolerences". I was aware when I allergy tested in 99 I showed some reaction to some of the food testing, but was warned about all the false positives. My food choices since 93 have been very limited, I got sick, lost 75 # in one month, couldn't eat. I found some herbals that helped me get back on my feet, I didn't have insurance so that was really my only choice. So I went and got tested again, same doctor, lots of new and/or increased allergies. This time showed reaction to dairy, beef, shellfish,chocolate, peanuts. Got the same warning about false positives. I figured what the heck, try not eating that stuff and see what happens. Well guess what!! Everything is not perfect, but the pain level is way down. I have intentionally and un-intentionally slipped up and there is no doubt in my mind about the connection. This explains the "burning mouth" and tiny blisters in mouth, the burning all the way to stomach.
This would explain WHY my ulcers won't heal and why my bowels won't work, everything is very irritated and inflammed. I'm taking anti-spasmatic, a long acting nitrate for the LES problem, Protonix and Pepcid for the pouch, Ultram for most of the pain and Xanax to stop the massive muscle spasms when the pain is really bad. Now of course I tried to talk to the GI doc and was told this "could not be the problem" they are convinced I'm nuts. All through the med reports they state patient needs to seek mental health help. Oh and they also did reports that "prove" the nerves that control the bowel down by the end are damaged. With all this evidence of problems they still state I need mental health help. The allergy doc when I tried to talk to him about what foods I could eat without having problems, and got yet another lecture on false positives and then told me to come back in 6 months!! Yes I tried to talk more to him, but he told me he had "allowed" me my three questions for that visit. I'm still very confused about all of this, researching web sites and such, but it looks like I'm on my own with this. I still find it hard to believe a food sensitivity can cause the muscles to lock down like they do, but I know that is what is happening to me. Now I just have to figure out what I can eat. But I have hope now. This has been going on for years. I read some of the recipes here and just am shocked at the ingredients! I couldn't eat that kind of stuff years before surgery, I couldn't understand how most of you people could eat that stuff. So if I can stay off the heavy duty meds that knock me out long enough, hopefully I will figure this out. Low-fat, low-cholestral, no artifical sweetners, no sugar, no preservatives, well you get the picture.
I needed to post this in case there is anyone else out there with similar problems, it's something to consider.
I now weigh 150# so I've lost 170# And if anyone even looks like they are going to say I've lost this the "easy" way they better start running!!! LOL I really need to get a new picture up too. I got a little excited last month and bought some new tops -- they are all too big now. Never thought I would complain about that!!!
1/1/06
Haven't updated for awhile. In some ways I don't feel I've gotten any farther, but some ways I have. I have gained 25# back. I'm having orthopediac problems, my left knee, my ankles and my back. So excersize has been mostly out of the question. I am still trying to find foods I can eat that don't make me VERY sick. I saw a new GI doctor at the Univ of Neb Med Center. He said the test results that say I have Pudenal Neuropathy are correct and has told me to go and get physical therapy. He wouldn't even talk to me about the upper GI problems (ulcers, gastritis, Gerd, esophagual spasms) that are causing me such grief. I tried to talk to him about "food sensitivities" but he wouldn't address it. I guess I should be happy he didn't tell me to go seek a shrink like the last one did. I am back on the anti-spasmodics which help, but between all the meds I can barely stay awake. I'm scared to death about this weight gain. My depression is still a major factor for me. I am scared to death that I can't stop this gain since I can barely walk.
9/17/03
Three years later -- I have gained back 60#, my sugar levels are high I might have diabetes. My Crohns is not being controlled. I'm still in lots of pain with arthritis/joint pain. Everything I eat makes me sick. I'm totally disgusted with myself that I have done all this
and I'm still going to be fat. I'm living on chicken noodle soup and rice crispies cereal with soy milk. Any kind of meat I just can't keep
down. My PCP moved to another state so I have to start doctor shopping again. I am still amazed at how little most of the doctors know about the care and feeding of RNY people. They continue to convince me to take NSAIDS even when they know I have ulcers and gastritis. I'm not sorry I had the surgery, although now the colon specialist and the GI doc have told me it was the worst thing I could of done since I have Crohns. So again it's all on my shoulders-- all of them telling me what I've done wrong but NOT what to do right.
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