Looking ahead to surgery, but fear is setting in.

[BIGMAN131307]

No seizure activity. Only the occasional headache when stressed or over heated.

Now if this new gastroenterologist I will be seeing soon can get the other end adjusted,
I'll be on cloud nine.

 

[seagull]

are they socca stripes

 

[BIGMAN131307]

are they socca stripes

Nope, NFL New York Giants (NYG) Home / Away jerseys.

Just an old dream that past me by. I might of been an Outside Linebacker or Defensive End. Like of a couple of my favorites Lawrence Taylor & Michael Strahan.

Epilepsy kept me from suiting up for the high school team. But that didn't
stop me from playing after school. Who knows I may be the next " Invincible "!!!

 

[Nakamova]

Congrats BigMan!!!! Despite your being a Giants fan....

 

[Music36]

Bigman,

That's great about the seizures. I have stomach problems too and went through lot's of tests. I was diagnosed with irritable bowel syndrome, hiatal hernia, and acid reflux. I changed my diet which has made a big difference.

 

[seagull]

Basket ball stripes

 

[BIGMAN131307]

Nope American Football.

_______________________________________________________

A couple days ago I had my appt with my new Gastroenterologist. Well it was a twofer. Two idiots at one time. Neither had any bed-side manner.

Instead of helping me get better grip on my over all situation with ordering updated tests. They just do the bare minimum: bloodwork, DIY stool sample test, FODMAPS. The Dr, sends the lab orders to the lab for me to have the blood drawn. While I also get handed the DIY stool test kit. What fun that will be poop, scoop, pack-N-seal. I need to get it to the lab in two hours of less while keeping it cool. If not acceptable, I'll have to do it again. Oh what fun this will be traveling on public transit. I was handed a couple pages about FODMAPS, told try this and come back in two months.

I have no problem trying the FODMAPS, it's the way they approached it. it would have been nice to get a test(s) to co-inside with the FODMAPS to help eliminate the worst of the worst first. Will I go back to these Gastroenterologists, I don't know. I'm no better or worse than I was before I scene them. Well, maybe a bit worse. Now that I have the added stress of their DIY stool test I need to get done in the coming days.

The doctors want us to be sick, while the insurance companies complain that we are. We can't win. I may have to go directly to an allergy testing site to get the tests myself.
But that may not be covered by my insurance.

 

[seagull]

Live in Uk you send 3days stool sample through post.Poor frecking postman.i on my iPad and difficult to flip back to page 1 but thought it brain surgery not being rude but why do they want stool sample if it brain surgery I feel lucky I in England if brain surgeon wanted stool sample.
Bowal surgery I had extended colectomy for redundant colon it made no difference still got redundant colon.
I read so many post Americans who really do have it bad health insurence.After watching Mr trump taking pi88 out of disabled I think you all have serious problems awaiting

 

[JJR1956]

Good for you Bigman! Keep going past 23.:clap:

Oh, another Giants fan here!

 

[BIGMAN131307]

It's been 23+ months since I had my RTLS surgery. This thread was started to post about my journey to, during, after seizure surgery.

So far the updates for my RTLS have been good, and hopefully stay that way.
While my seizures seem to be under control for now. I still have another major
stress to deal with IBS. The stool sample is to help treat my IBS.

 

[seagull]

Most of my guts were removed for about year it was ok but it as bad as before now.i just take the meds I mention on other thread.
My daughter who has /had e Also had ibs had operation called mallons which use appendix appendix ceacal opening she wold have phosphate enema plus 500mis normal saline flushed through and opened her bowel.Brillient operation with in three years her guts were normal and operation was reversed.It not for faint hearted but it meant she lived more normal childhood

 

[Music36]

BIGMAN,

Are you careful about what you eat and drink? I have found that changing my diet has helped a lot with my IBS. I took notice of what would upset my stomach and trigger attacks. I don't eat spicy food. I don't drink soda or milk. I have almond milk with my cereal. I eliminated mayo and yogurt from my diet, as well. I noticed that some foods I can eat if I don't overdue it or go eating it three days in a row. I can't drink O.J. or lemonade or eat too many tomatoes b/c of the citric acid. I have to be careful with salad dressings. I don't put butter or sour cream on anything. These are just some examples. Some days, my stomach tells me not to have certain things I can normally tolerate and I listen otherwise I'll pay the price.

 

[BIGMAN131307]

I'm as careful as I can be, without going crazy.

But it's just not enough at times. I know a few of my "trigger" foods, so I avoid them as much as possible. The FODMAPS plan has some foods on both the good & bad list. Which makes it a real pita to deal with. So I will be trying it, using the plan as a "loose guide". I'll remove "most" of the obvious bad foods. While the rest will be like a game of "Battleship", hoping for hits.

The end goal is to have my IBS under control enough to be less stressed out. If/When that happens I might try reducing my AEDs dosage. Then perhaps completely be off it, if no seizures. Right now that is a risk I don't want to take.

 

[JJR1956]

The end goal is to have my IBS under control enough to be less stressed out. If/When that happens I might try reducing my AEDs dosage. Then perhaps completely be off it, if no seizures. Right now that is a risk I don't want to take.

You have IBS too? Yup, same here. Plus sleeping is impossible. Just be careful about your E meds. (I know I don't have to tell you that) I've been on Pheno for a very long time. The only issue with it is low bone density. I take a supplement for that...otherwise, I'm sticking with it until my last breath. I haven't had any seizure activity since I'm on it.

I wish you the best my friend!

Joey

 

[Blonde Angel]

Nope American Football.

_______________________________________________________

A couple days ago I had my appt with my new Gastroenterologist. Well it was a twofer. Two idiots at one time. Neither had any bed-side manner.

Instead of helping me get better grip on my over all situation with ordering updated tests. They just do the bare minimum: bloodwork, DIY stool sample test, FODMAPS. The Dr, sends the lab orders to the lab for me to have the blood drawn. While I also get handed the DIY stool test kit. What fun that will be poop, scoop, pack-N-seal. I need to get it to the lab in two hours of less while keeping it cool. If not acceptable, I'll have to do it again. Oh what fun this will be traveling on public transit. I was handed a couple pages about FODMAPS, told try this and come back in two months.

I have no problem trying the FODMAPS, it's the way they approached it. it would have been nice to get a test(s) to co-inside with the FODMAPS to help eliminate the worst of the worst first. Will I go back to these Gastroenterologists, I don't know. I'm no better or worse than I was before I scene them. Well, maybe a bit worse. Now that I have the added stress of their DIY stool test I need to get done in the coming days.

The doctors want us to be sick, while the insurance companies complain that we are. We can't win. I may have to go directly to an allergy testing site to get the tests myself.
But that may not be covered by my insurance.

Hey
please don't get too down in the dumps by some Drs who don't think in what they say.
Use the FODMAPS information as a guide.
I basically put 2 info sheets on my fridge of the foods that are the goodies and baddies.
*Some people do need to increase their dietary fibre intake while following the low FODMAP diet.. best to discuss this with your Dietician.
The Dietician, rather than a Dr can suggest recipes, provide eg of foods to look in food products and how to check ingredients.
:rock:

 

[Blonde Angel]

I'm as careful as I can be, without going crazy.

But it's just not enough at times. I know a few of my "trigger" foods, so I avoid them as much as possible. The FODMAPS plan has some foods on both the good & bad list. Which makes it a real pita to deal with. So I will be trying it, using the plan as a "loose guide". I'll remove "most" of the obvious bad foods. While the rest will be like a game of "Battleship", hoping for hits.

The end goal is to have my IBS under control enough to be less stressed out. If/When that happens I might try reducing my AEDs dosage. Then perhaps completely be off it, if no seizures. Right now that is a risk I don't want to take.

A good FODMAP list should provide a guide of **how much** is suitable eg celery no more than 1 stick, broccoli or potato less than half cup.
I think part of the battle is working out if excess fructose causes issues, or is it lactose, polyols ?? Stuff like that needs working out. I know what foods can trigger my girl and sometimes all it takes is having more than the desired amount can stuff it up.
Those foods with high sorbitol eg pears, plums and mannitol eg watermelon needs to be understood also.

Even though many FODMAPS are poorly absorbed in all people, we do not all experience symptoms. There are a few reasons why symptoms occur only in some individuals.
1. The amount of gas produced in the large intestine may be greater
2. The gut may be more sensitive to the presence of gas

Try to see a dietician they can offer heaps of supports.
I found a great dietician and have no regrets.

 

[masterjen]

So close to 2 years, Bigman! Congratulations What are your plans to celebrate??

As for the GI issues, I hope things get under control very soon. I am on my way to work so no time to read back in this thread, but have you had that hydrogen breathing test to see if you are lactose intolerant? If you are not lactose intolerant, it could be intolerance to cassein, the milk protein. Depending on the degree of sensitivity for either lactose or cassein, you may have to give up even items prepared with milk like bread, cookies, etc.

 

[BIGMAN131307]

Use the FODMAPS information as a guide.
I basically put 2 info sheets on my fridge of the foods that are the goodies and baddies.
*Some people do need to increase their dietary fibre intake while following the low FODMAP diet.. best to discuss this with your Dietician.
The Dietician, rather than a Dr can suggest recipes, provide eg of foods to look in food products and how to check ingredients.
:rock:

A good FODMAP list should provide a guide of **how much** is suitable eg celery no more than 1 stick, broccoli or potato less than half cup.
I think part of the battle is working out if excess fructose causes issues, or is it lactose, polyols ?? Stuff like that needs working out. I know what foods can trigger my girl and sometimes all it takes is having more than the desired amount can stuff it up.
Those foods with high sorbitol eg pears, plums and mannitol eg watermelon needs to be understood also.

Even though many FODMAPS are poorly absorbed in all people, we do not all experience symptoms. There are a few reasons why symptoms occur only in some individuals.
1. The amount of gas produced in the large intestine may be greater
2. The gut may be more sensitive to the presence of gas

Try to see a dietitian they can offer heaps of supports.
I found a great dietitian and have no regrets.

The sheets I got on FODMAPS is just that, two sheets front and back. But most of it is conflicting information. It list goodies & baddies on one sheet. While another list some goodies as baddies. Some baddies can also be goodies, etc. It doesn't even provide any real quantity recommendations. I was hoping to get a referral to see a Dietitian from this gastroenterologist. But didn't yet.

So close to 2 years, Bigman! Congratulations What are your plans to celebrate??

As for the GI issues, I hope things get under control very soon. I am on my way to work so no time to read back in this thread, but have you had that hydrogen breathing test to see if you are lactose intolerant? If you are not lactose intolerant, it could be intolerance to cassein, the milk protein. Depending on the degree of sensitivity for either lactose or cassein, you may have to give up even items prepared with milk like bread, cookies, etc.

Not sure yet what I would like to do. Maybe a long drive to the country. Nope can't do that, no car. Well the very least I'm going to do is renew my license. I do need a new picture anyways. lol

I had a breath years ago, but not recently. I'm trying to get a whole workup. But this new gastroenterologist is just dragging along. I'm just hoping this new added stress doesn't set me back seizure wise.

 

[Blonde Angel]

See a Dietician.
they can guide you in more detail with food choices and ideas...

Yes
some foods can be conflicting don't be surprised and let that confuse you, its about working out what works for YOU. You have the luxury of knowing how foods can be a good or baddie and eliminating what s appropriate. That's why I posted earlier that its important to use it as a GUIDE... I don't have it easy with my girl not being verbal..... I have to go through the process of elimination and its slow and it requires a lot of patience ...

 

[BIGMAN131307]

5/13/16

This BIGMAN has made it!!

2 years after surgery, and still seizure free.

My life is finally mine, and not controlled by Epilepsy.
Now I feel like my world has opened up.
Soon I will drive, and not rely solely on others.

I'm going to keep on my AED. I don't want to cause any unnecessary stress on my body.
Next month I go back to the gastroenterologist for a followup. Hopefully it would be a more productive appt. One way or another I will get a referral to an allergy specialist. I want to get a better handle on my IBS. Once that is under control, I may consider reduce my AED down the road.