Carrie's Story - Page 62 - ThinnerTimes

chilmoe · 05-18-2007, 11:04 PM

im hanging, hey van, maybe i just have a pissy pouch like you and trina - do you have pain when eating/drinking?

im just guessing here, not sure what else to do.

although now that i have confirmation that its not a leak or bowels and i get pain from drinking/eating but its just pain its not causing more harm by eating/drinking, (i hope), i am pushing passed it as much as possible just to get some food/fluids in to manage daily

i got 2 cups fluid and almost 500 calories today - that is a good day lately - glad that the worst case scenario was eliminated, so now im not scared to push it, but the pain, omg it is bad when taking in anything, its bad enough when not, but when consuming it sky rockets, very weird, right now i am trying to drink cream of mushroom soup made with milk (calories), but ouch ouch ouch - had taken me about an hour to do this half cup - i heard that some peeps with gallbladder cant do dairy or fats, but i get the pain no matter what i eat/drink so i am doing what i can that has enough calories and protein in it to just keep me going at this point

well off to rinse out the camp fire smoke - very cold here tonight so we came home to sleep in our warm beds and will go back out to campground after the farmers market tomorrow morning, it is to warm up tomorrow so we will stay there tomorrow night - cant believe how cold i can get and how i cant warm up

thanks everyone, you keep me going

chilmoe · 05-18-2007, 11:09 PM

Quote:

Originally Posted by VanessaSFL

How do you all say BS up there?

Hang in there Carrie,

how do we say BS? - healthcare

i am very disappointed in the lack of care we have at our hospital, but also at the receptionist for dr. nohr, the lack of caring and lack of trying to understand my situation is uncalled for, unnessecary and just plain unkind, i dont get it, what am i doing wrong? i keep over analyzing this situation and all the conversations i have had with the so called health care professions here, trying to figure out what i can do differently....its not like this everywhere, but trying to figure out why its happening to me.

thanks for listening it so helps to talk about this

VanessaSFL · 05-18-2007, 11:29 PM

Carrie,I still have pain when eating solids.I have had EVERY TEST IN THE BOOK....besides a few strictures..it all good.I have had swallow tests,Nuc med tests,scans,multi EDG's,scopes,GB ultrasounds(3 total)...you name it.My DR.was very determined to find the cause of my issues...I think I have had over 15 different tests to rule out problems.My last stricture was in Dec 06,I know my stoma is small again but tired of tests/scopes.My Dr.said I was a 4 in Dec...normal is around 10.

Liquids do not hurt but I have to drink slow.

In my situation I just had to accept that this was the way it was for me.I still can't beleive that my labs are on spot except for my Iron..which only makes sense(no meat)

When I say I have Pain with solids..I should rephrase that..its not pain...but like someone is sitting on my chest,pressure and sharp pains under my right rib cage.I do not have any ulcers and heartburn issues...all pictures show a really cute ,healthy pink pouch...with alittle -itty-bitty stoma

But I am here and I'd do it again.

They must rule everything out...seems like no one wants to "deal" with you..kinda like passing the buck...I am sorry, but things will work out.

AlabamaChick · 05-19-2007, 02:37 PM

Carrie, the only way I can describe the feeling I have when I eat solids is that the inside of my pouch feels raw and sometimes it feels like it may be the esophagus at the bottom where it connects to my pouch also. It does not burn or have sharp pains (very much), but when it does it will double me over and some days when it does this it will last all day, just ease up some and then come back, sorta like a wave of it. It does never last longer than two days though when it's that uncomfortable. It really gets my nerves in a mess when it does this though because it's all I can do to hang onto my sanity and it shows at home with my family. So if I tell them I am having a hard time, they all sorta just back away and leave me to handle it til I feel better. Sometimes solids feel stuck, so that's why I prefer soft or mushed up food. My feelings though are mostly VERY uncomfortable feeling in my pouch or nausea. Just a sick, yucky feeling and absolutely HATE eating. I was that way last night after trying to eat some really juicy baked chicken, only about 2 ounces. I just felt gross and yucky and very nauseous. My pouch just ached like it hates food touching it. Coffee with tons of powdered milk is the best soothing thing in the world for me. It feels like velvet.....ahhhhhhh. lol Probably why I drink so much. I usually only try solids once a day though and that is at dinner time and it's ONLY because I need to force food in for my well being, otherwise I would not even eat then. I'd just have my coffee. I have noticed lately I do get shaky when I go for a while without much food and to even do things such as the latch on my necklace is a chore to hold my hands still. But it's a feeling of weakness when I shake, I think, from a lack of food. I do still throw up at least 2 to 3 times a week. I just do the best I can do every day. No day is easy, but I've gotten used to it just being my life now. I still worry when I get old if I will just starve myself to death because I won't have the will to force the food any longer. That REALLY bothers me. I have even told my kids when I get older, please don't let me starve, make protein smoothies and make me drink them. I feel bad when I tell them these things, but I want them to understood my fears about this and they are old enough to understand what I am going through. Carrie, I feel like your problem is something different. Your pain is TOO severe and it's become debilitating to you honey. Not to mention, you used to be fine after surgery and then all of a sudden this started. It's not like you had this problem from the first day you had surgery. So something has happened to make you have this pain and NO you shouldn't just have to live with what you have! I worry so much about you! I just wish there was something we could all do to take care of you so you would be well again. My heart breaks knowing you are going through so much.......and all I can say is I'm sorry and I love you g'friend.....but that's not enough to make you well.... I pray so hard you will get help soon Carrie!

BTW Van, mine was a 9 the last scope and he wouldn't stretch it anymore then.

JenBear7 · 05-20-2007, 08:14 PM

Im glad this got moved here. Now I can find you. I Miss you! Its been nuts around here... Im just bout on my way to bed.. we need to catch up again.. I havent talked to you all weekend.. and I had to hang up Friday Argh... forgive me!

paige52 · 05-22-2007, 01:58 PM

Carrie it's been a few days since you posted how you are feeling and I wondered....

I was talking to the bariatric coordinator at the support group I go to and she said she had the same problem as you and it turned out to be an internal hernia. Her symptoms sounded exactly like what you describe and they thought she had gallbladder issues as well but it would come and go, it went on for like 8 months and then finally her surgeon decided to just go in and do exploratory, found the internal and fixed her right up.

She said she had CT scans, HIDA thing, upper GI, scopes... you name it. I did some research on internal hernias after GBS and they occur in less than 2% of the people, out of 17 that presented with IH, only 9 showed up on any scans or tests and most were 4 months out with 3 presenting at 7 to 9 months post-op.

I've been able to eat the last week or so and drink but occasionally the pain flares up as does the nausea and vomiting.. she thinks that given all my other symptoms and the fact that I don't have a gallbladder, I might have an internal hernia as well. We talked it over with the local surgeon and he agreed, so I'm headed down to LA to see my original surgeon next week and do some tests.

Just wnated o let you know I'm thinking of you...

Just a thought, since the gallbladder things seems clear.

shereeks · 05-22-2007, 03:09 PM

Hey Carrie

How you are feeling a little better today. Am thinking of you and wish I could offer some pearls of wisdom but I just haven't got any right now.

But know I'm thinking of you and praying that you'll be feeling better soon!

JenBear7 · 05-22-2007, 03:45 PM

she still has one more gall bladder test to go.. she never had the HIDA... not going to happen this week either

*grumbles*

Edit: And her pain doesnt come and go.. its there and worse.. never goes away.. not intermittant.. its constant.. worse with eating.

LisaBoston · 05-22-2007, 04:44 PM

Quote:

Originally Posted by JenBear7

she still has one more gall bladder test to go.. she never had the HIDA... not going to happen this week either

*grumbles*

Edit: And her pain doesnt come and go.. its there and worse.. never goes away.. not intermittant.. its constant.. worse with eating.

Jen, has she been able to read this post - look up to Paige's post on internal hernia.

lward76 · 05-22-2007, 04:45 PM

OH Carrie I hope things get better with you soon!! You have got to be one strong girl!!!