ok, i really need some help! (for my momma) - ThinnerTimes

moonmother14 · 05-12-2006, 08:35 PM

Ok, I do not know where to start. If you can believe it I am a college graduate, and this is my VERY 1st "blog" (I guess that’s what those crazy kids are calling it these days, lol) I have never had a reason to do this, but now I do. I spent an hour or so reading a lot of the threads that you guys have written, and I did get some useful info, but I thought it might be best to just tell our story and see what you guys think. I know that you guys are really the professionals here, the docs know what they know, but.... this may be long, and I hope to be as clear as possible, so this is the deal:
~My mom had the surgery in Nov. of 2002
~From the beginning she has had pain "even water hurts"
~The real trouble started about 11 months after the surgery
~She calls it her "attacks"
~There is always pain, but it varies in degree
~The pain is located on her left side, directly under her ribs (like under the last bottom 2) it starts out as a stabbing sharp pain, "it feels like someone is poking me with a hot knife” then the pain travels across her mid abdomen to her right side, when the pain is in full force it is even in her back directly behind the pain in the front
~During the surgery her Gal Bladder was removed
~For the most part, food is in no direct relation to the pain, she can eat something one day and be fine, and then the next she will be doubled over in fetal position in the floor sobbing
~She has always had acid reflux, and some trouble with her esophagus, she has done most all the meds for this (ie. protonics, nexium, ect) with out much success (but I do not think that acid reflux is the main culprit)
~In the past month or so her pain has worsened, she has extreme trouble with swallowing liquids, solids do not give her much trouble, she says she feels like the liquids get stuck, and has been throwing them up (she has never really thrown up since the surgery, this is a new thing with the liquid)
~The throwing up is in no relation to volume
~She stays nauseous 98% of the time, in no relation to food
~As far as medical tests she has had the following:
X-ray, put to sleep and tube down throat and up butt, "drank the stuff", tube down nostril to esophagus (while awake with no sedation!)
~Her gastrologist states that he "has done all of the tests he can do and has found nothing"
~Her mental health is getting a little shaky due to many doctors telling her that the pain is all in her head
~At first I wasn’t sure, but I have seen it with my own eyes, it is not something that a daughter ever wants to see a mother go through
~I just don't know what to do, she has a doc appt on Tuesday with her PCP, but she has been with him for a few years and nothing so far
~After reading some of your stories I am going to see to it that they do a CAT scan on her
~Worse news, she has no insurance! So the stigma in a doc's office that goes along with this
~ I hope not to have confused you, I am sure there is more info that I could share, but I would just love any help you can offer
~She states that she is going to see about trying to get into a pain mgmt clinic, but I really wish that we could find out what is wrong so that the pain goes away, not that she learns to just cope with it, she has made comments in the past of her not wanting to live like this, and not being sure of how much more she can take....
So, thank you for your time and thoughts, let me know

Sam.

Grauntie · 05-13-2006, 06:01 AM

Welcome to our forum first of all! I am glad you wrote. This is the place to get different opinions! Wow, sounds like your Mom has been through alot. It also sounds like she has had good tests done. Every once in a while I get something similar. Its gas! Have your Mom try a Gas-X or something similar and see if that helps. Its amazing how painful trapped gas can feel. Just a suggestion! I hope she gets some relief soon.

MiladyB · 05-13-2006, 09:03 AM

I'm curious, have they done all of the tests since the time she hasn't been able to keep down liquid? My concern would be a twisted bowel or something like that. I would think a CAT scan probably with dye, would be able to diagnose that. I also wonder if all of her labs have been checked recently? Is she dehydrated? I have also heard of some people having some kind of abdominal spasms which can be extremely painful. Considering how far post-op she is, though, I'm not sure that the spasms are something that might occur.

I would say, that you should stay persistent with this. If you have to, ask for another opinion. I sure hope your mother can find the answers, she must really be frightened by all of this. I know I would.

Zenomia · 05-13-2006, 09:10 AM

Sam:
1. What kind of surgery did your mother undergo? Was it Gastric RNY, Lap Band or one of the many others that may have been performed in 2002.

2. Where did she have her surgery and WHO did it? I would contact the origin of problem..ie: her Surgeon, and let them know what is happening. They are the ones that will know way more about what her problem may be than a standard PCP. If her original Surgeon isn't possible, then the hospital she had it done at should know who to refer her to.

3. Did she ever attend a support group or any type of post operative care? If so, she might want to get back into contact with them...it sounds like she needs support.

4. Is she taking her vitamins and suppliments. When is she taking them? (The Calcium and Iron shouldn't be taken together) Has she had her levels checked? Is her protien, B12, Iron, Calcium and other vitamin levels ok?

5. Is she taking medications to control the pain? If so, what? Is she taking Asprin based products or any other pain/stomach upset medicine that would accerbate her problems because the new stomach can't handle it?

6. Is she eating sugar or sugar alcohols, fats, large amounts of carbs, milk, fried foods..etc...Most of these are NOT tolerated by WLS Patients..there are other foods that cause these types of symptoms, it varies with the patients. A food journal would be something that should be done, as well as documenting when and what vitamins and minerals are taken.

This surgery is not an easy thing, we all understand that. Some may not have been prepared for the changes that this surgery FORCES on us. We have to be hyper vigilant of our bodies in ways that we weren't aware before surgery.

Without knowing exactly what she had done, it would be difficult to say what her problem could be...as each procedure has risks specific to the surgery performed.

Also, if your Mom can no longer be an advicate for her health, and you are doing that for her...I commend you. I know how hard it is to watch someone you love suffering and not understanding the why of it, or getting any real answers.

Now, I haven't undergone the surgery myself...I have however been researching it forever and have found that these are going to be the most common asked questions and suggestions in reguards to your mothers problems. SO much rides not on if she has insurance or not, but if she was educated as to how to deal with living LIFE as a WLS recipient.

If none of the above issues applies, than I hope that another on this forum can assist you.

Best reguards and wishes to you both!! Your mother is a very fortunate woman to have you looking out for her!

Laura

moonmother14 · 05-14-2006, 06:25 PM

First off, thank you to everyone for welcoming me to the gang, and for being to wonderfully helpful. To answer some of the questions I will try as follows:
~She had the laparoscopic GB.
~ She had her surgery in Johnson City Tennessee. The bad news is that she has basically been black balled by her surgeon for two different reasons, the first is the no insurance issue, and then the second comes a little more in depth. A year or so after the surgery our local news ran a special on the surgery. Several different people were interviewed and showed on the nightly news. She and I were interviewed and in that she disclosed the amount of pain and severe issues that she has had due to the surgery. Also, in the same breath when asked by the reporter if she would do it again she calmly replied, “in a heartbeat.” She would do it again simply due to the level of freedom the weight loss has given her.—anyway to make a long story short, the next time she visited her doc, he reprimanded her in her session and stated that she “had set the progress of the surgery way back.” Look, it is important, as you guys well know that a person be WELL informed of what could happen. She only spoke the truth and he was extremely harsh with her and basically never listened to her again. Needless to say she doesn’t go to him anymore. Dr. Watson was his name I think. (Normally I would feel weird about disclosing a name, but he has not been the most ethical of persons, so. The patient should come first. Maybe it really is the hypocritical oath!)
~She has never been to a post-op support group, there is one locally, but she doesn’t really ever make any plans to go out and do much. She never knows when an “attack” will hit, and now she gets a friend to drive her everywhere b/c she is afraid to drive incase the pain hits.
~Of course her B12 is low (her energy level is null and void), and no she doesn’t really take her vitamins. In the beginning she ordered the special GB vitamins, but now I don’t think that she really takes anything. She has had numerous tests to see where her levels are; I think that mostly they came out ok. I will try to get her to get the doc to run new tests on Tuesday to see where they are now.
~Uh, pain meds, well, hum, how I can explain, SHE LIVES ON THEM. Don’t know about the level of aspirin in them. This is one huge reason of my concern. She is to the point now where very strong pain meds don’t even touch or ease the pain. I am in great fear of her screwing up her liver. And to be honest, I think that some of the newest intense pain might be directly in relation to her liver. As a child I can remember her taking Tylenol on a daily basis (for other reasons- headaches and so on) and we always joked that it would catch up to her. Well, that and the new stronger pain meds are probably running a toll on her.
~Money is very tight for her. So as far as food is concerned, she eats basically what she can afford. I know that she completely stays away from sugar, but that is about as best she does with her diet. She is constantly craving ice. She drinks a lot of coffee and diet Pepsi, and I get on to her about that ALL the time. So yeah, her diet leaves a lot to be desired. I will suggest her keeping a food journal, but she insists that it has very little or nothing to do with food. B/c one day she can something and have no repercussions and then another day the same thing could set her off.

again, thanks a billion for everything...

Grauntie · 05-14-2006, 06:43 PM

Did you know that ice chewing/craving is a sign of being anemic? If she is anemic (low on iron) that would make her feel tired, sluggish, even weak. SHE HAS TO TAKE HER VITAMINS. She had the surgery and MUST follow the rules! Take her and get lab work done ASAP.

ers2433 · 05-14-2006, 07:01 PM

You are getting lots of great advice !!!!

I commend you for taking such a active roll in try to help your mom.
The more educated you become on the subject the easier it should be for you to help.

I haven't had my surgery yet but from my understanding it is really really important to do those vitamins and eat the right stuff.

Thanks for taking the time out of your life to find help for your mom, not all kids would do that

Please keep us posted on her progress

lealphachienne · 05-14-2006, 07:28 PM

HAve they done tests to rule out pancreatitis?

botchy · 05-14-2006, 08:46 PM

pancreitis would be my fear.

TX2UKLea · 05-15-2006, 08:56 PM

I've had pancreatitis...and she exhibits a lot of the symptoms. Also, sodas (because of the bubbles) can cause problems. The stomach doesn't have room for all the bubbles. I can't drink them.

Good luck...I will pray for your family.