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Total Colectomy part 6

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Posted 10/20/2005 4:59 AM (GMT 0)
Sara - so your doctor is saying that you have to eat this way for the rest of your life?  Poor girl... its probably a struggle to get enough calories nd nutrients in.  I want you to know that you were my inspiration before I had my surgery, and I thought of you when I was having my complications because I wanted to handle them as brave as you did!

Cathy - so glad to have you back home.  I was so worried about you... I know that you are upset and annoying because this happened to you.  I agree that you should talk to someone about it, but maybe it should be a professional.  Also, if you think that you have depression maybe a low dose SSRI would fool the body into being a little bit happier.  The ileo sucks, but you just have to keep telling yourself that its only temporary and you can live with anything for a short time, right?  I am suprised you still have TF and why didnt they put a PEG in... I give you credit I could hardly stand the NG for 2 days... I dont think I could hack it for the amount of time you had.

Cherish the small victories. You are going to be weak...but you will get stronger and there will be small victories! :) 

Take care... and if i can help at all... I will

PS.  My butt situation... I go once every 2-3 days... not hard but very formed BMS.  I have adhesions in the middle of my abdomen that get very achy when I lay flat and stretch out at times.  But, regardless I am not distended, my stomach doesnt hurt all day... and I am happy with the results!

Hugs,

Emma

Posted 10/20/2005 6:59 PM (GMT 0)
Emma- you're right about sleeping. I haven't slept in the last 2 nights. I finally made it to the bed last night, but it didn't help sleeping. Any advice anyone? I too, have trouble laying flat and feeling pulls and tugs.

I have my surgeon's f/u appt today. I went to the lab yesterday for a blood draw. It hurt like heck, all I could do was cry. OK nurses, my platelets are over a million. Any ideas as to why?

My hair is falling out too. They say it's malnutrition. All the skin is peeling off the palm sides of both hands. Not sure why that's happening.

I do feel slightly more energy each day, but the energy goes quickly. And I can't sleep. Anyone use Ambien? Did it help? It didn't help me in the hospital. I'm on Zoloft for the depression, hasn't helped yet.
I have something called sick sinus which means I have a fast heart rate and high blood pressure. I'm taking Metoprolol 4 times a day.

That's it for me. Fatigue still sets in quickly.
Love to all,

Cathy
Posted 10/20/2005 7:30 PM (GMT 0)

Emma, I missed you and today is my last day of my course -- I'm thrilled!  I know you can appreciate that.  As far as by butt status goes, I have a BM about 3 times a day.  But I probably eat more than all of you put together -- I love food.  My weight is stable at 113, which is also great for me.

Cathy, the palm peeling thing sounds like a reaction to stress.  I'm sure you can get something for it from a dermatologist.  Ambien sucks!  It doesn't do a thing.  I'm still having trouble sleeping at times and the only thing that works is Valium!  I only take it once in a while now (once every week or two), but after my surgery, I took it almost every night.  We need sleep to heal!

Mary, we're thinking of you.

Amira

Posted 10/20/2005 11:03 PM (GMT 0)
Hi Ladies,
Oh Emma you are so sweet! I wouldn't say I was brave , it was a facade, more like my husband doesn't deal with sick people so I couldn't act sick. On the way home from the hospital after a little over two weeks iin there he asked if I wanted to go see a movie that night!! Um no!!!!! One week out and I was having Dim Sum with his friends in CHinatown and b/c he said he wouldn't take 'NO' for an answer. Anyway around him I had to get dressed, puit on makeup, make dinner for him etc...he is very sweet, but completely and utterly oblivious and not nurturing in any way--I ended up going to my parents house without him for over two weeks but I just couldn't take all the pressure from him anymore. Blah blah blah.....anyway on to MUUCH MUCH more important things!!

Cathy--I know you are depressed and I do believe you, but also you have remarkable spirit!! Really I think most people would not be coping as well as you are, even though you are having a very difficult time....Of course crying is normal, I'm sure it hurts like hell to be poked and prodded and have blood drawn.

I used Ambien when I worked overnight shifts and it worked for me then, but everyone's body reacts differently to different things.....so it's all trial and error it seems. Will your doc prescribe something? I took 4-6 Tylenol Pms after surgery and that worked for me, but I still could only sleep for an hour or two at a time----Prescriptions sleep drugs must be stronger, and like Amira said you'd probably gain some strength and be less stressed if you could get some sleep----it must be so frustrating for you. I hope the doc can do something!!

How can the docs let you get malnourished on tube feedings???? That seems like an error on their part or I am being too harsh? did they tell you what you are deficient in?? I take Liquid Vitamins and drink ensure, I am still a bit anemic, but I think that will get better once I go off the blood thinners. Can you take Liquid Vitamins? Centrum makes one and so do some other major brands. Strees can also make your hair fall out.---so can Blood thinners!!! Blood thinners are notorious for loss of hair according to my hematologist, even tho it's not listed as a side effect. Will they tell you exactly what vitamins and minerals you are deficient in so they can add those in extra quantity to your tube feedings? This time in your life is probably the most important for your body to have all the nutrients it needs, ya know!! My palms peeled too after I left the hospital, I am freaking out that it happened to you too!! very weird!! Then it happened again about a month ago.....I have no idea why....could it really be stress or maybe the blood thinners?

Amira, congrats on finishing up your class! As for the scar tissue my motility doc doesn't think it's a good idea right now....b/c first would be the exploratory surgery to find all the scar tissue not just what they found on the x-rays and scans and then surgery--so two more surgeries....ugh, plus I was out of work all summer and my husband is a full-time student so needless to say we are barely scraping by. I just literally can't afford to take any time off. The doc said to wait 3 or 4 years or to deal with it or deal with it or deal it if i have a complete obstruction----that could happen ONLY if the scar tissue keeps forming, but no one can predict that. So as long as I stick to my diet and meds I feel pretty good.
It really awesome that you can eat so much food---I still get full really fast. The only thing I really miss is Middle Eastern food adn I don't cook it for my husband b/c it's just too sad for me........he eats it at lunch when I am not around to be jealous!! :)

Emma--you have adhesions too??? I hope they don't bother you too much! I do a lot of yoga stretches esp. stomach stretches and it seels so good to really pull those muscles--even tho it's a bit painful. Maybe in a few months ...my surgery was quite a while ago now... and yours was fairly recently.


OK--i've been trying to write this all day at work so I'm finally goin to post it!

Bye--Hope everyone had a good day
Sara
Posted 10/20/2005 11:32 PM (GMT 0)

Hi Sara, it's not all perfect: I ate a falafel a couple of weeks ago and broke out in hives like you would not believe, from my scalp to the bottom of my feet!  It took 6 days of steriods and some major antihistimines (2 25mg of benadryl did nothing every 4 hours) to get rid of them.  Of course it could have also been from the hair relaxer I had done that day; I guess I won't know for sure for a while, until I repeat either one of those.  I think our immune system won't be the same for a year or so.

I had to cry to my doctor for 3 years before he agreed to this surgery.  I just don't understand why they can't go in there and examine and fix at the same time.  I'm just scared for you with regard to obstructions.  And, being on a liquid diet for so long doesn't seem right.  Why doesn't your doctor go on one him/herself for a month and then come and then let him come and tell you to wait 3 years.

Take care, and don't just listen to one doctor, get additional opinions.  And if finances are a problem now, at least you can have a game plan for what you can do and when.

Love, Amira

Posted 10/20/2005 11:51 PM (GMT 0)
geez, those hives do not sound fun at all! that's so weid you must eaten falafel a million times before....Hmmmmm, I guess you're right it takes out bodies a while to adjust to their new system.

You are totally right--I should get things figured out maybe with another doc (second opinion) so when I have the finances or insurance I can get it taken care of...call me crazy but I hadn't even thought of it like that before. Thanks! that is something positive to focus on :)
sara
Posted 10/21/2005 1:35 AM (GMT 0)
My pleasure, Sara.
Posted 10/21/2005 5:57 PM (GMT 0)
I'll try this again- 3rd time.

I SLEPT!!!

Not the whole night but pretty good. I took hydroxyzine 50mg at bedtime. I woke at 3am with terrible back spasms. I moved to the recliner, didn't help. I tried relaxation techniques, didn't help. I finally gave in and took DRUGS. I took methocarbamol and propacet (muscle relaxer and pain pill) and slept the rest of the night.

My tube feeding is 3 cans of Ensure during the night and then I am trying to eat well during the day. As soon as I can eat well a few days in a row, then I can take out the tube. The tube gags me terribly. Especially when we flush the tube with water, don't as me why. My palms continue to peel, eventually I will run out of old skin.

I want to try liquid vits. That is a good idea. Do they taste gross? I have a hard time with gross stuff. Even Ensure doesn't taste good to me- hence the feeding tube.

Lunch time- they have me on a schedule!
Talk to ya'll later.

Cathy
Posted 10/21/2005 5:57 PM (GMT 0)
I'll try this again- 3rd time.

I SLEPT!!!

Not the whole night but pretty good. I took hydroxyzine 50mg at bedtime. I woke at 3am with terrible back spasms. I moved to the recliner, didn't help. I tried relaxation techniques, didn't help. I finally gave in and took DRUGS. I took methocarbamol and propacet (muscle relaxer and pain pill) and slept the rest of the night.

My tube feeding is 3 cans of Ensure during the night and then I am trying to eat well during the day. As soon as I can eat well a few days in a row, then I can take out the tube. The tube gags me terribly. Especially when we flush the tube with water, don't as me why. My palms continue to peel, eventually I will run out of old skin.

I want to try liquid vits. That is a good idea. Do they taste gross? I have a hard time with gross stuff. Even Ensure doesn't taste good to me- hence the feeding tube.

Lunch time- they have me on a schedule!
Talk to ya'll later.

Cathy
Posted 10/21/2005 6:06 PM (GMT 0)

Hi Cathy,

I actually like the vanilla ensure plus -- I was disappointed when I had to stop drinking it.  So, I'm a little weird, no big deal.

After the surgery, I couldn't go over bumps in the road in a car without some major discomfort.  I'm thinking this is similar to your back pain/muscle spasms.  So, that too will pass.  I'm glad you slept though.  You sounded more rested in your post.  It must feel good to know that feeding tube will be gone soon.  I'm guessing that yucky taste in your mouth will be gone soon as well.

Hang in there and continue to do well.

Amira

Posted 10/21/2005 7:00 PM (GMT 0)
Cathy, Such good news that you slept!! Sometimes out bodies need drugs I think :) especially when our bodies are not cooperating with us :)

Sara
Posted 10/24/2005 1:27 AM (GMT 0)

Hi everyone,

Well, I got sick of gagging on the feeding tube and had my husband take it out yesterday.  So, I have to eat.  Everyone is watching me and what I eat.  It's very annoying.  Or, they give me too much food at a serving, which feels very defeating. nono    But, I feel much better without it.

My insurance wouldn't cover Zoloft so I have been off it for a few days now and I'm starting to get weepy again.  Maybe it was helping.  The insurance wants Paxil which I have issues with.  My husband went to the office and picked up Lexapro so I started it today.

I get tired very easy still, but each day I see that I am a little stronger.  Still struggling with the back spasms.  I started scarguard today, I am a keloider.  I'm 1 month out from the last surgery, but it doesn't feel like it.  I feel like I have been run over by a freight train.  I still have fluid in my lungs, so when I get over exerted, I have rattles in my chest.

My kids are doing fine, very helpful.  Tiff came home for the weekend.  They grow up so fast.  It was nice to see her again.  I miss her alot.  She's always been my best friend.  And as someone said a while back, I am very blessed.

My mom goes home on Tues. as long as Wilma behaves.  She lives NW of Orlando.  I'm going to miss her too.  She cooks.  The whole family is going to miss her.  She's off on a cruise Thurs. with my sister, her family and my dad.  Life is tough.  She says if I need her still, she'll come back afterwards.  We'll see, I guess.  I can't see making her come back now, I have another surgery in a couple of months (reconnect).  I'll need her then.

That's it for me tonight, ladies.  I hope all is well with everyone.

Cathy

Posted 10/24/2005 1:50 PM (GMT 0)

Hi Cathy,

It seems odd that an insurance company would have the right to predicate what type of medication you can have.  That's a decision that should be left to physicians, don't you think?  I guess that's why I don't deal with insurance in my parctice.

Anyway, you sound much better, even without the Zoloft.  And, it must be great not to worry about the feeding tube any more.  I find that I eat much more if my servings are small -- tell that to your family.  It feels like an accomplishment when your done; you'll also find that you'll get hungry a couple of hours later and then it's time for another small portion.  Next thing you know, your portions start to get bigger and you're starting to worry about your weight again.  It's just like gaining a little strength each day.

I have to run, have I good day!

Amira

Posted 10/24/2005 7:10 PM (GMT 0)
Amira- you're right about the portions and eating more frequently. Yesterday, I ate 4 times, I couldn't wait for dinner, and ate a 1/2 sandwich. When should I try more residue foods? I'm still avoiding residue foods. I did get a few kernels of corn mixed in a stew that I ate. I wanted to see what would happen.

I finally found my list of appointments and noticed that I issed a bunch of kids doctor appointments. OOPS! I have an asthmatic daughter and a ADHD son. So, doctors appts are routine for us. They both ran out of medicine while I was in the hosp. so I've been working on getting caught up. I am very bored. How long til driving is allowed?

I agree with you, Amira, I don't take insurance in my practice either. I can't stand the idea of an insurance company telling me what to do or not to do. I keep a full pharmacy in my office, so I don't get too involved with pharmacies and prior auths, etc.

Everyone- I need help with the back spasms. Even valium didn't help. The only thing that helps is getting up and moving around, and NOT laying back down. It's affecting my sleep, which is hard enough already.
Let me know if you have any ideas.

Gotta go. Love to all,

Cathy
Posted 10/24/2005 9:10 PM (GMT 0)
Love you mom!

Just wanted you to know I'm thinking about you.

You looked better and better evertime I saw you.

XOXO

~Tiffany

It makes me so happy to see you happy!

Posted 10/24/2005 9:57 PM (GMT 0)
Hi Cathy, I just have time for a quick reply.  I started the more residue foods a week after I came home from the hospital, when my doctor told me I could eat anything I wanted.  Some of the foods went right through me, others didn't.  The ones that did, don't anymore.  The only thing that I had problems with and am too afraid to try again was spicy (hot) foods.  It was hotter going out than coming in!

Driving -- also 8 days after I came home, my doc said it was OK to drive if I wasn't

medicated.  I drove about two weeks after coming home.  Be careful of bumps in the road, no matter who is driving.  They really hurt and it wasn't until week 6 or 8 that they stopped bothering me.

Have a good day and I'm really happy you are eating!

Love, Amira

Posted 10/25/2005 3:17 AM (GMT 0)

Amira - holy goodness, bumps bothered you until week 6, thats crazy!  I wasn pain free by about week 3 I think!

Cathy - have you tried lidocaine patches?  Those might help with the back spasms.  Also try some ambien at night and flexeril during the day.  They may make you tired, but if you dont have to be too awake that might be an option.

I would stay away from high residue foods and continue with the low residue diet for a while... just because you dont want to chance the system.  I took care of a patient who had hemicolectomy, and he has been back FOUR times with small bowel obstructions... and you certainly dont want to be him.

Driving - here is the rule... get in your car and put your seatbelt on... do a shoulder check like you would if you are in traffic... can you do that easily?  Ok time for the next test... sit in your seat and pretend like a kid just pulled out in front of you and you have to slam on the breaks... can you do that?  If so you can drive!  Your body is programmed with a reflex... and if it is too painful you will pull back rather than step on the break which could endanger your life.

Hey everyone else....we need a TCC check in?!  How is everyone doing!

And Cathy, you cannot be everything to everyone and still get better... worry about the essentials and forget everything else... and let that hubby pick up some slack with the kids too!

Hugs to all,

Emma

Posted 10/26/2005 7:50 PM (GMT 0)
Hi everybody:
Thanks for all your well wishes.
I just got back from the hosp. yesterday. I'm pretty tired, although like you Cathy, I cant get a good night sleep. I had valium in the hospital that seemed to work a little.
It's hard to tell if my abdomen has gone down. Swelling? I'm lumpy. I also had more frequent bms in the hospital.
On the liquid diet but I get nauseus.
Cathy I hear what you're saying about depression. I'm extreamly weepy. I watched "The Biggest Looser" last night and bawled my eyes out. That sounds funny I know, but it's the truth.

Mary
Posted 10/27/2005 7:59 PM (GMT 0)

Hi Everyone,

Just wanted to say hello and wish you all well.

Zoe

Posted 10/29/2005 1:55 AM (GMT 0)
Hey my name is Connie and I just found you guys. I am having colon surgery on Nov. 8th. I have a tumor on the right side and a retocel on the left . he is taking out the tumor and part of the colon if it looks supicious and then taking out the large part of the colon because it is too much and it has fallen into itself and my rectum has collasped. he said I will be in the hospital for 4 days and he is going to try to do it lapraoscopy but not to count on it because I have alot of scar tissue from 7 pregnancys and 3 of them c-section. I guess my question is am I in for alot of pain?
Posted 10/30/2005 6:34 PM (GMT 0)

Hello All,

I just got back in town.  My best friend's mom just passed away last Monday night, so I went out to Palm Springs, California to be with the family on Tuesday and just got back late last night.  She died indirectly from colon cancer.  She had almost her entire large intestine removed 14 years ago.  But the cancer came back about 6 months ago and she ended up dying from heart failure as a result of the pain associeated with the cancer.  She didn't seek medical care after finding out the cancer had returned.

She provided me with great support during my 2 surgeries.  She had told me that she experienced intense pain about 4 times a year since her surgery 14 years ago and attributed it to gas.  She feared I would have the same and was against the surgery, but was still very supportive.  As it turned out, I haven't experienced any of the gas pain she spoke of.  I told her about our site here and was hoping she would join us.  I'm sorry she didn't; we could have been of great help to her.  I'm going to miss her very much.

Connie, do worry about the pain from the surgery.  It's managable through medication.

Emma, I couldn't get a seatbelt on for 6 weeks.  The thought of putting one on freaked me right out.  I was afraid I'd get out of the habit of wearing one.  But, that didn't happen.  I'm back to my old driving habits.

Zoe, it's nice to hear from you.

Cathy and Mary, hope you two are doing well.

Amira

Posted 10/31/2005 2:29 AM (GMT 0)

Thanks Amira,

I have Fibromyalgia and that is my concern in managing the pain. And I think the unknown of what he will find.

I have found alot of information on this site and it helps to know you are not alone.  

Connie

Posted 10/31/2005 4:50 PM (GMT 0)

Connie - welcome to the group!  I feel that there is pain, but that the pain is manageable and especially if you go into it with the idea that there will be some pain and that you can handle it.  I am not able to take any strong narcotics because of severe allergies.  I had a dilaudid PCA for 2 days after surgery, and then I had IV toradol (which is like potent ibuprofen) when I went home I took nothing but ibuprofen because I couldnt take anything strong than that... and I did fine!  I was pretty much back to normal (although tired more easily) after about 3 weeks!

Amira - Gonna sound like a mother here... but if you couldnt put a seat belt on... I hope you werent driving! :)

I am actually been having problems with constipation the last few weeks... trying to decide if it is something that is short lived or if it is something that I should report.  I have been going about every 3 days or so.

Only 6 more weeks of fall semester for me! This semester has been very trying for me!

Hugs,

Emma

Posted 11/1/2005 12:37 AM (GMT 0)
Emma, I'm glad I didn't tell you earlier about the seatbelt. Now that it's after the fact, mother away :-)

Connie, if you look through the past posts, I remember there being a nice lady with Fibromyalgia. If anyone remembers her name, speak up! Also, her posts are easily recognizable because at the bottom of each post, she listed her medications and conditions. So scan through Total Colectomy parts 1 -6, and you should find it. I'm guessing she posted in parts 3 or 4. I also remember her saying that she was a regular on the Fibromyalgia site, not just Ostomies.

Amira
Posted 11/1/2005 3:45 AM (GMT 0)

That was garden something was her screen name and Tammy was her real name.  She was involved when we had the  big blow out over the person telling us that we were all insane... hehe remember that! That got my goat and I sent my response a flying... ahh the good old days!

Amira - I AM SO MAD AT YOU... i cannot believe that you drove without a seatbelt on, you could have been seriously injured.  Every single day I see trauma that come in, and most of them are saved from life threatening injury by not wearing their seatbelt.  My first 2 cars that I had, both had broken automatic seatbelts, so I never wore one much... and when I got this new car I didnt much either... but now I am religious... I wear it every single place I go.  Working with the trauma patients... I wouldnt wanna be caught without one.

Ok rant over!  Sorry sweetie, the nurse and future NP in me just couldnt let you go with that one.

Cathy - how are you doing?  How is eating?  Remember, every little bite is one more than you did before! :)

Hugs,

Emma

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