I would like 'time out'...

God this stuff gets so old sometimes. I would like just one day off. I feel like a miserable old b****.
With Christmas just around the corner I should be able to slap a smile on my face, but all that would
achieve is the cracks in the corners of my mouth to crack a little more. POOH!!!!!!

Yeah zena, I think this is an official POOH day!!:)

Sr, I don't have young children now, but I do look after my 2 grand children 3 days a week and they really want
Grandma's Christmas house. How can I deny them that. So I guess I'll have get over this blah feeling, grit my
teeth and get on with it:)

{{{Vicky}}}

You do know that the cracks at the sides of your mouth may be due to severe vitamin deficiency secondary to mal-absorption - right?

Are you on any kind of supplemental nutrition, hydration fluids or vitamin/lipid supplementation by feeding tube or by IV?

Perhaps your doc could refer you to a dietitian or nutritionist for a thorough nutritional assessment if you aren't getting that kind of support now.

Getting good nutrition into you might make a big difference in how you feel. Eating well isn't enough when you have the issues you are fighting. I doubt you need me to tell you that but a lot of GI's are just plain ignorant about nutritional support of complex patients.

Hope things look up real soon.

Hey, I'm a bit of a BAHHHH HUMBUGGG sort of guy myself. Its become so commercialized I dread the years end. So ,,,I can be happy not doing anything. Ahhhh, just what I need, no lights, no decorated tree, no screaming kids at shoping malls, no hustle or bustle. All I do is keep the true message inside me and let the plastic world go by. Lights on a dying tree cant beat sunup on the fall colored leaves or the mist over the bayou anyway....

vicky -

My sister just finished getting a comprehensive assessment at Mayo AZ. She has severe short bowel with bacterial overgrowth and severe fat malabsorption.

Have they done 72 hour fat stool testing? If not, this should have been done.

Your doc should order a complete set of labs checking your lipids, vitamins, micronutrients and minerals. I wager you are seriously depleted in more than one of these areas.

Are you a candidate for pancreatic stents to improve your pancreatic function/reduce pain?

Are you seeing a palliative care or pain management team?

My sister has had retinal and corneal damage due to the inability to absorb Vit. A - one of the fat soluble vitamins. When she finally started having serious vision loss her retinal specialist ORDERED her GI to order a complete Vitamin panel and she had zero Vit. A levels. Vit A is stored in the liver and for her to have ZERO meant that she had depleted all of her liver reserves. Same was true of Vit. D and Vit. K.

It has taken a year of intensive IV vitamin replacement to bring her back up to the normal vitamin ranges and stabilize her vision.

At Mayo they do 10 days of abx on and 3 weeks off to treat bacterial overgrowth. That may be part of your problem as it is very, very common among people with serious small bowel damage. If they have not evaluated you for this. they should.

She is on a very strict low fat, low fiber and low oxalate diet prescribed and overseen by a dietician specialist who only works with patients with complex GI problems.

She is also on very high doses of prescription pancreatic enzymes (in capsules). The top doc at Mayo said that most docs don't use pancreatic enzymes properly and they must be given in very high amounts. I don't know the exact details of dosing but she had tried enzyme supplementation before with no success.

Between the diet changes, abx and the enzymes she has had a huge improvement in just 3 weeks.

But she is still TPN dependent and receives supplementary lipids and multivitamins in every TPN dose because she had gotten into muscle wasting/starvation by the time she got a local doc who would order TPN for her.

One of her hurdles was that her labs always look "pretty good" to a regular doc. In fact, they were good because she had such low blood volume that the proportions of blood components like WBC and RBC were OK. But she ended up in Cardiac Care with heart rate of 30 and blood pressure of 70/40 due to low blood volume. She also developed severe blood sugar swings.

Assessing the whole clinical picture - not just the labs - is necessary and only a really experienced doc can do that well with complex patients like you.

I cannot urge you strongly enough to get proper GI care from a top GI rehab/transplant specialist or doc with extensive experience treating short bowel syndrome.


Patricia

A time out would be great! I feel like I'm constantly dealing with things related to all of my health problems. It gets so overwhelming at times!

KEMiColon- I'm kind of in the same place as you. I'm a 20 year old college student trying to figure out what to do for next semester. If I take a medical leave of absence, all of my student loans will be completely messed up and I'd have to deal with that. Ughhhh I just want a month vacation from everything! No sickness, sleep in bed all day, books, my laptop and anything I want to eat (with no weight gain)! That's more or less my utopia right there!

Patricia, I forgot to tell you that my triglycerides are very high at 1000 right now, just one more thing my
pancreas has done for me!!

RiddleMeThis- Yeah, it sucks. Luckily I have grants and stuff that the school doesn't take away due to a medical leave, so I REALLY lucked out.

dunny2 said...
Well, I guess everyone gets those 'Pooh' days. BUT I have a feeling this is going to last longer than a day:(

All right we will give you 25 hours to come around.  Ok??  

Awww THANK YOU!!!!