Krista

tiny one

Hey Krista how are you doing? It's been a while since you've posted. I hope all is well with you. What's the update on you?

kristasplace

Hi Tiny!
Hi Tiny! I just replied to a post where i was asking about you! I know i haven't been coming here as much as i should. I used to come and read once in a while, but over the past couple of months, i've just been too busy. I'm still waiting for the takedown...My doctors are conflicting with one another as far as scheduling, and it's left me somewhere in the middle. I've been seeing doctors for my other problems particularly the neuropathy, and the osteoporosis. They keep telling me that osteoporosis doesn't hurt, but i'm always in pain from it. The orthopod says it's because i always have hairline fractures, and that's what gives me pain. I have been wondering about everyone here? Particularly you, Mark and Vinny. I skimmed through the posts and hadn't seen anything from any of you except Mark. How have you been? Have things gotten any better? I talked to my surgeon about the possibility of having to move into the bathroom after the takedown, and she looked at me like i was crazy! Is it possible they don't know what happens to us after they get done chopping us up??

Have you had the experience of your doctors withholding information from you in order to keep you from worrying? It happens to me constantly, and not just the doctors, the nurses do it too. Before i had the resection, i asked the ostomy nurse if i would have anything pass through my bowels while they were diverted. She said, "yes there will be. Wow...nobody every asks that." If i hadn't asked, she wouldn't have told me. We should start a thread about that! Cancer patient equals protected child!

Boy did i get off on a tangent! Maybe i should go to bed...

Let me know how you're doing!
Many hugs,
Krista

tiny one

kristasplace said:

Hi Tiny!
Hi Tiny! I just replied to a post where i was asking about you! I know i haven't been coming here as much as i should. I used to come and read once in a while, but over the past couple of months, i've just been too busy. I'm still waiting for the takedown...My doctors are conflicting with one another as far as scheduling, and it's left me somewhere in the middle. I've been seeing doctors for my other problems particularly the neuropathy, and the osteoporosis. They keep telling me that osteoporosis doesn't hurt, but i'm always in pain from it. The orthopod says it's because i always have hairline fractures, and that's what gives me pain. I have been wondering about everyone here? Particularly you, Mark and Vinny. I skimmed through the posts and hadn't seen anything from any of you except Mark. How have you been? Have things gotten any better? I talked to my surgeon about the possibility of having to move into the bathroom after the takedown, and she looked at me like i was crazy! Is it possible they don't know what happens to us after they get done chopping us up??

Have you had the experience of your doctors withholding information from you in order to keep you from worrying? It happens to me constantly, and not just the doctors, the nurses do it too. Before i had the resection, i asked the ostomy nurse if i would have anything pass through my bowels while they were diverted. She said, "yes there will be. Wow...nobody every asks that." If i hadn't asked, she wouldn't have told me. We should start a thread about that! Cancer patient equals protected child!

Boy did i get off on a tangent! Maybe i should go to bed...

Let me know how you're doing!
Many hugs,
Krista

Hi Krista! It's good to have an update. I do pretty good as long as I keep taking lomotil. There are some times that I know to tough it out and keep running to the bathroom. I don't want to get a blockage. My surgeon never told me what to expect after my takedown. He wasn't helpful after the takedown either. He did a sigmoidoscopy with balloon dilatation under sedation on Dec 31st. I haven't noticed much difference. He says that I scarring from the radiation in the rectal area. My gynecologist says that I vaginal shortening from radiation. I will be sitting down and talking to my surgeon next week and telling him just how much pain and mental anguish that I've had from this. If I wasn't able to control this I would seriously consider having the bag back. Sometimes I would be in and out of the bathroom up to 15 times a day for as much as 40 minutes at a time. Now after taking the meds I usually have about 6 hours where I don't have to go. The numbness in my hands is completely gone and I have just slight tingling in my feet. My last chemo was Oct 31st, 2007. God bless.

kimby

kristasplace said:

Hi Tiny!
Hi Tiny! I just replied to a post where i was asking about you! I know i haven't been coming here as much as i should. I used to come and read once in a while, but over the past couple of months, i've just been too busy. I'm still waiting for the takedown...My doctors are conflicting with one another as far as scheduling, and it's left me somewhere in the middle. I've been seeing doctors for my other problems particularly the neuropathy, and the osteoporosis. They keep telling me that osteoporosis doesn't hurt, but i'm always in pain from it. The orthopod says it's because i always have hairline fractures, and that's what gives me pain. I have been wondering about everyone here? Particularly you, Mark and Vinny. I skimmed through the posts and hadn't seen anything from any of you except Mark. How have you been? Have things gotten any better? I talked to my surgeon about the possibility of having to move into the bathroom after the takedown, and she looked at me like i was crazy! Is it possible they don't know what happens to us after they get done chopping us up??

Have you had the experience of your doctors withholding information from you in order to keep you from worrying? It happens to me constantly, and not just the doctors, the nurses do it too. Before i had the resection, i asked the ostomy nurse if i would have anything pass through my bowels while they were diverted. She said, "yes there will be. Wow...nobody every asks that." If i hadn't asked, she wouldn't have told me. We should start a thread about that! Cancer patient equals protected child!

Boy did i get off on a tangent! Maybe i should go to bed...

Let me know how you're doing!
Many hugs,
Krista

Krista
Hope I'm not butting in here. My dad had osteoperosis in his 50's and had a lot of pain from the small fractures. Don't let them get away with that! They KNOW. He was on oxycoden for 2 years for the pain.

Since my colostomy takedown in May, I've had all kinds of problems with the bathroom. I finally found (after much trial and error) what works for me. Please remember how different we all are but this may give you a place to start. I was in the restroom every couple of hours around the clock, so sleep was the number one issue for me. I now take (every single night I do this) my 'potty meds' starting at 7:30 - 8pm everyday. First dose: 2TBSP Pepto Bismal, 2 Lomotil, 2 Immodium. 1 1/2-2 hrs later (depending on bowel activity) 2 TBSP Pepto, 1 Lomotil, 1 Immodium. Bedtime: 2 TBSP Pepto, 1 Lomotil, 1 Immodium. If I have any issues during the night I dose again. Hate it, but like it better than being up all night.

I don't remember how much bowel you lost. I lost almost 1/3 of my small intestine and all of my descending colon so I have issues many won't, including malabsorption of certain vitamins/minerals. It also means my likelyhood of a successful life after takedown was diminished so I consider this a success. I wish you all the success in the world!

Kimby

kristasplace

Takedown nightmares
That just reeks, Kimby! Sounds like you're having similar problems to Tiny, and to others i've heard about. I know how you guys feel because that was my life with the tumor. It's so strange when i hear about other people's tumors: they are just protruding masses. My tumor wrapped around the entire inside of the colon, and grew inward until there was barely a pinhead hole for anything to pass through. I've told Tiny one before that my biggest fear is being blocked like that again. Like her, i have the scarring, and vaginal shortening from the radiation. I have not been pushing my doctors for the reversal that should have happened a year ago. I seriously think i would keep the ileostomy if it weren't put in as a loop, and only meant to be temporary. Have you considered going back for a permenant colostomy, Kimby? It might be something to consider depending on your lifestyle. My only big complaint about it is that i can't swim like i love to. A colostomy would be easier. I can't remember how much of my colon they took. I know they took half of the rectum, and a portion of the colon. 2 feet sounds right, but i'm not sure. Sounds like your tumor was much higher up, Kimby.

As far as the osteoporosis, they know i'm getting fractures. My orthopod basically said there isn't anything they can do about it. They don't do surgery for these things, and i'm not willing to take those shots. I honestly don't know what to do. I'm not treating myself as fragilly (is that a word?) as i used to, though. I'm walking, and just trying to keep an eye on where i step so i don't fall. The problem is that i can't get enough of the right type of exercise to control my weight, and now it's gotten way out of hand.

Tiny, i got a notice in the mail that the GI wants to do the dilation/colonoscopy on May 1st. I don't know yet if they want to do the surgery that day too. I'm very nervous thinking about it. I'm just not convinced i should do it. I wonder if there are many others with these drastic problems do to scarring?

Many hugs,
Krista