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Mindy
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kaj2313 posted:
Any news on Mindy? Hannah how are you doing now?
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hannahleigh89 responded:
Last I heard from Mindy, she wasn't doing real great but was hanging in there. I believe she goes for surgery on December 14th, but I may have the date wrong.

I'm doing fine. I'm just struggling with a few things, and every time I sit down to write about it, I get upset. I'm getting to the point where everything I eat just goes straight through me, so I've lost some weight and my hair's starting to fall out too...By the handfuls... I started drinking Pediasure yesterday though, to try and help with my nutrition, because at my last visit with my GI doctor, he said I was malnourished. And it's only gotten worse since then.

I'm having withdrawals from the Fentanyl patches... I still have some, but I don't want to prolong coming off of them. I have a fever of around 99.7 most of the time, and my norm is around 97.6, but I had blood work done lately and my white count is normal. So I guess I'm just dehydrated and my body's in rough shape.

I'm exhausted all the time so I'm getting B12 shots right and left, but they don't seem to be doing anything. Who knows, really. My nurse said I'm not recovering nearly as quickly as she expected, so I guess there may be another problem that we're not aware of yet. Again, who knows.

But altogether, I'm doing fine. I'm just really stressed and tired, and I wish I knew what was going on.
 
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OyWithThePoodlesAlready replied to hannahleigh89's response:
Oh Hannah, I'm so sorry, you just can not catch a break! You might want to look into a product called Absorb Plus. Its expensive but I found it was so much better than the off the shelf stuff like ensure. I feel a bit absurd mentioning it bc I was in no where near the condition you're in but I went from cravings and exhaustion back to my old self (along with the herbs and probiotics)... I suspect food might influence my crohn's more than other people but I just wanted to mention it in case it might help. I really hope you get to feeling better soon!
~Ali
 
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mindyj1971 responded:
Hi guys! I'm still here....barely. Spent another weekend dehydrated and in bed. I just realized today that part of my problem this weekend is I was due for my Remicade the day after Thanksgiving, but because of surgery coming up I couldn't get it. Surgery is on December 14th and it can't get here quick enough. I am putting all kinds of hope in to this, so I hope I get a little bit of relief. So tired of spending days and days in bed! This is the first year that I do not have my Christmas tree up on Thanksgiving weekend:( I think I am finally on top of the dehydration thing...again...but, man, this is getting old, old, old! I can barely stomach the Gatorade anymore. Oh, it just makes me gag!

Hannah, I'm sorry you are having such a rough time:( It is just so frustrating! Just know that we are all thinking of you:)

Hope everyone enjoyed their Thanksgiving:) I made it to my mom's, but didn't stay for too long. I was sooo tired that day, but I did manage to eat a little without getting sick to my stomach;)

My husband took the kids over to his family's house on Friday to visit for a while. They have not been the most supportive people on the planet for me and since I hadn't been feeling all that great, I decided to stay home and rest. My father-in-law told my hubby that I brought this on myself by not going to the doctor right away (almost 3 years ago) when my symptoms started! He also says that if I would get out more that I would feel better and I shouldn't be so depressed about things. GGGRRRRRRRRR.......I'm beyond frustrated with that family!

Thanks for checkin in on me!
Big hugs to you all!
Mindy
 
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OyWithThePoodlesAlready replied to mindyj1971's response:
oy, I hate know-it-all wanna-be-doctors! This disease makes no sense, why some people get it worse than others, why one thing works for someone, and not for another person. Its bad enough you got the way short end of the stick, don't let anyone tell you this is your fault! and maybe your hubby needs to tell his dad to shove it? or not:)

if you can stomach juice, I often make my sports drinks out of 1qt juice, 1 qt water, and a rounded 1/4 teaspoon of salt. if you're drinking a juice wo potassium, I use light salt (it has more potassium than sodium).

hope you can hang in there and the next few weeks aren't too terrible! and don't worry about the Christmas tree - we haven't had one since our first year married when the thing fell over and broke half of our ornaments:)

take care
~Ali
 
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arbob5 replied to mindyj1971's response:
Oh Mindy, I'm so sorry your in-laws are so uninformed. Shame on them. They certainly are not good role models for you kids, that's for sure. Again, I'm so sorry that you have to put up with their ridiculous "know it all" attitudes.

I know this surgery will be the answer for you. These next couple of weeks will seem so long for you. But it will get here, and better days ahead.

Just remember that we are all here for you, day and night. I think of you often and have told many friends about you and Hannah and what you are going through. You are both such strong females. Amazing.

Hang in there and God bless!
 
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mindyj1971 replied to OyWithThePoodlesAlready's response:
OY- Thanks so much for the belly laugh....the tree falling over! What a mess! I'm trying not to stress about the darn tree, but the little ones want it up....yesterday! We'll get there....they have been real troopers this weekend while I have been down.
Thanks so much for the recipe for the drink....I'm sooooo going to try it! Anything is better than gagging on that Gatorade. I'm trying to find something that I can stomach for the night I do my prep for surgery. So I will experiment with your concoction! Thanks, thanks, thanks!

Arbob, once again...thank you for your encouraging words! Life is way too short to waste on people who refuse to understand or even TRY to understand what I am going through. It just hurts because for the first 10 years of my marriage, hubby and I made a point of spending every Sunday with his parents so that our kids would have a close relationship with their grandparents. His mom and dad know me....I have always been a type A person....never sitting still for very long. The fact that I have been down for the count should have been alarming for them....but they just think that I am feeling sorry for myself and that is irritating. His mom is a little better than his dad, but still.....

Anyway, thanks so much to all of you for being here!

Take care and big hugs!
Mindy
 
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hannahleigh89 replied to mindyj1971's response:
Mindy, I have a couple of questions for you, if you don't mind. I say Mindy because she's the only other ostomate I'm aware of besides Gary, and he hasn't been around for a while.

1. How long do your bags usually last?
I have the two part bags, which I was really liking, until it seems as if I've had a few bad batches. I've still been having to change the backing part every other day or so, because it leaks all around it. I have very, very little skin left around my stoma. It's mostly a big bloody circle all the way around it.

2. What does your output usually look like?
I know this is a strange question. But mine, for the most part, is just liquid. Completely liquid. Very little viscosity or whatever the right word is for it. It usually looks a lot like bile- that darkish green color. And there's been a lot of output lately.

3. How's Gary?

Like... I don't know. I think my output is too liquid, and I think the bags are supposed to last longer. I also think there has to be a way to keep my skin from being so raw. It wasn't like this at all with my first stoma. He did a terrible job on this one, and it's angled down and aimed like, towards my skin. I have to cut the backings (they're supposed to be moldable) and sort of push up my stoma and wedge it underneath it.

I'm also still losing my hair. But a lot less now. I started drinking Pediasure, and that seems to be helping. Plus, I've noticed that the times when my output is a little thicker than water, it's the days I remember to drink the Pediasure.

Anyway, any advice is appreciated. I just don't know what to do. I'm considering asking him to re-do my stoma. It'd mean another surgery, but it might be worth it...
 
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mindyj1971 replied to hannahleigh89's response:
Hi Hannah! Sorry you are having some problems!

My bags can last 3-4 days or longer; I usually change the bag after 2 days because of the filter on them. The filter wears downs and doesn't work as well after a couple of days and my bag fills up huge with gas! I change then entire site, skin barrier and all, every 4-5 days. I have been fortunate to not have leakage problems. When I first had the surgery, I was so thin, but now that I have gained weight back, I do notice that I have to play with the skin barrier a little more to get the correct fit. The skin directly around my stoma is red and raw and itches sometimes. I use stoma powder and it seems to help. Once I have the barrier back on it doesn't feel uncomfortable, only when I have the peel that stuff off! OUCH!
My output has always, always, always been nothing but liquid! And sometimes it is a dark green color like you mentioned. I've been told that the green color is because it goes through your system so fast; I guess it takes on the color of bile in your stomach. I do notice if I eat cheese it thickens up a little, but never on a regular basis. I'm positive that is why I am dehydrated all the time. I have to empty my bag 6-10 times per day and I am up at night emptying, too!
I'm still drinking BOOST every day; sounds like the Pediasure is helping you a little. I may try the Pedialyte for my prep that I have to do for surgery. I am so sick of Gatorade! YUCK!

Is it possible that your stoma is still changing and healing? I don't know how many weeks it has been since your last surgery; but I know that it can change size for weeks after. If you are unhappy with it and it is causing this much grief for you, it might be worth mentioning to your doc. Let me know what happens with that.

Gary is back in the hospital as of last night. He was having some chest pain, so he went to the ER and the decided to keep him for observation. He was there last weekend, too! I swear that guy can not get a break! He should be calling today, so hopefully I will have some better news for you. He is really having a hard time right now:(

Hugs, Hannah!
Mindy
 
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hannahleigh89 replied to mindyj1971's response:
Sorry it took me a while to get back to you.

It is still possible that the stoma is changing, but it's been the same for a little while now. It was much more swollen right after the surgery. Now, it's very small and oval shaped and crooked. When it contracts, it's like it pulls back inside me almost; it's much different than the first one was. But when they did the surgery, there was a tear in my intestines and that made everything very inflamed. They also had to use a plastic pin thing to hold it up afterward that was pulled out before I left the hospital. (Extremely painful.)

I wish poor Gary would get better already. I feel so bad for him.

I also hope things go well with your surgery as I know it's soon and I'm not sure if I'll be around much between now and then. I'm going to Kentucky to see my cousin's this weekend, and I have to find room for finals between now and Tuesday. Good luck and I'll be thinking of you.
 
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hannahleigh89 replied to hannahleigh89's response:
I think I set a new record: Two changes in one day. I officially have no skin left. And in a few hours, I'm sure I'll have to change it again so the surgeon can see.


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