Total Colectomy part 6

Hang in there Kelly, things will improve. The x-ray is the first step to getting healthy. Please give my best to Shelbs.

Amira

That's great news Tiffany. Continue to keep us informed. Looking forward to hearing that your mom is home and life is back to normal.

Amira

I have news from Shelbs as well. Her husband left a message on my phone to say that the surgery went well and she was in recovery. I hope to talk to her in a couple days.

Kelly

Hey y'all!  I'm back!  This is my second day back home and I can truly say I have never missed home so much!  The hospital stay home wasn't too bad.  I was there for 5 days and was off the morpine drip the 4th day (Wow, that was a hard decision to make!)   The first day was rough...when I woke up from the surgery my body was in spasms, which lasted for several hours.  Every day after that went smoothly.  I was up every other hour walking, which I believe truly helped me.  I finally had a BM the fourth day, so they let me go the 5th.  I believe I am the latest one to have surgery, so for all the newbees I would love to give as much info as I possibly can....I am an open book!

I am having a few "issues" I guess you could call them with my regularity of BM's.  I rarely have them. When I do they are painful and impossible for me to push out.  I have maybe 1 a day and its probably a 1/4 cup or less.  My family says its because I don't eat anything.  This was my menu yesterday...Breakfast--1/2 cup of malt of meal with milk.  Lunch--1/2 cup of chicken noodle soup with 1 large roll.  Snack--1 cup Oyster Crackers.  Dinner--1/2 cup chicken and dumplins', which consists of chicken, carrots, cooked biscuits, and celery. (Southern girl)  As far as BM's go I had maybe 1/3 cup about 4 hours after lunch.  Is this more or less than what y'all eat?  It seems as if the majority of y'all have 3-4 BM's that are consistent and unpainful.

I know it has only been 7 days since my surgery and my pain is understandable....I guess I had in my mind I would be going at this 3-4 times a day.

Last but not least I want to thank you all for yoour thoughts and prayers through this challenge I have been given.  You are all wonderful women, which I am very happy to have met! 

Talk to you soon!

PS...Zoes--I would love to be a part of the TCC!  Here is my info:

Shelby

[email protected]

479.531.1857

809 SW Tunbridge Blvd

Bentonville, AR 72712 

Love

Shelbs

Hi Shelby,

Glad you're well on your way to recovery!  Hopefully your BMs are more frequent now; if they aren't, I'd check with your surgeon.  Keep us informed.

Hey Tiffany,

It sounds like your mom will be home any day now.  Just remember that she'll tire very easily in the beginning and will need lots of sleep!  Thanks for sharing the good news!

Amira

Hi everyone,

Remember me?  I'm just out of the hospital today.  How miserable that was.  5 1/2 weeks!  And I came home with a feeding tube, and temporary ileostomy.  I'm waiting for home health to deliver my tube feedings and I'm waiting for my Lovenox to be delivered.  I still hurt alot and am tired all the time but I feel a whole lot better than I did.

So my 1st surgery seemed to go normal and I was discharged on day 5, I then promptly started vomiting and not passing stool.  7 hours waiting to be seen in the ER, and they decided something was wrong.  It took another 6 days for them to figure out what was wrong.  I had herniated and perferated, and now had sepsis and peritonitis really bad.  Two more minor surguries putting in drains into abcesses and then on the road to recovery.  Unfortunately I am stuck with the ileostomy (pouch) until everthing heals 3-6 months.  And once I'm eating enough we can pull the feeding tube.

That's all I know for now, and I have managed to exhaust myself. 

Thank's to everyone for your thoughts and prayers, I could feel it!  Thanks too to Tiffany for trying to keep you guys up to date.

Love to all,

Cathy

Cathy, you sound just great!  I'm so happy for you that you are finally home and on the road to recovery.  Despite the difficult time you've had, I promise it will be all worth it at the end.  It's been less than 3 months for me and I feel just great: I don't think about what I can eat or not eat; I don't consider the consequences of what I eat anymore.  I just eat whatever and know I'll have a BM sometime within the next 24 hours and that will be that.  It's just wonderful.  I do Pilates 3x a week, and my trainer tells me that my ab muscles are strong, and that the little bulge on one side is more noticeable to me than others.  Also, it has been flattening out and I know within a year it will be completely gone.  The scar is also much better than I thought it would ever be -- use scarguard, it really works!  Also, my weight is much easier to maintain than before the surgery.  If I pig out for a few days in a row than I just fast (sort of) a day or two, and I'm back to normal.  These are the things you can look forward to!  This goes for you too Shelbs.  The only thing that I've noticed that's a negative is that I seem to be more susceptible to common illnesses that ever before -- common cold, allergic reactions, stuff like that.  But I think that will also return to normal soon: I'm thinking my immune system is not quite what it use to be yet.

 

Cathy and Shelbs, I'm really happy for both of you!  Keep getting better!

 

And Cathy, Tiffany sounds adorable!

 

Love, Amira

Mary, as soon as those strips fall off it's safe to use scarguard.

Amira

Cathy, the funny taste/coating in your mouth will go away within a weeks time -- I had the same thing.  Within a month you'll start getting your enery back -- you won't need to take a nap every time you go up and down those stairs that I promise will get easier by the end of the week.

If you weren't a little depressed, I'd wonder about you.  I'm sure depression is just the tip of the iceberg.  I'm sure you're angry, scared, disappointed, confused, and everthing else in between.  Just know that all this will pass, and you will recover and be happier than ever.  The body image thing will improve as well.  Scars will heal and if you don't want to wait until they do so on their own, you can always have anything and everything fixed!  Any bulges that shouldn't be there will flatten out in time. 

You've made it through the worst part, now it's time to sit back, let others take care of you and breathe, deep long breaths -- try to just relax a little.  Things will get done, whether it's you who does them or not.  And listen to the caregivers assigned to you.  They know what you're going through and can provide lots of information you can't get anywhere else. 

Take care and feel free to vent to anyone and everyone!

Amira

HI Cathy and Amira!

Amira I am so happy to know you are doing so so fantastic--the power of medicine is really amazing.....I can't believe you can eat whatever you want. Truly incredible!!!

Cathy--I am so gald to know that you are home.....I had my surgery a while ago--May 20th so I wasn't on the board that much before you went in for your surgery.
Just wanted to know that I am hear for you to vent ! Just like Amira said we need to vent!
I had complications too and just went back to work the second week of September. I am still mainly living on Boost and Ensure and other protein drinks and anything really super soft, overcooked rice, overcooked pasta (gross) and liquid vitamins, but no meats or fruits or veggies any any kind--not even smoothies!

I wish I had some tips on the depression--I too was pretty depressed, and still am a little about the food situation, (but that is due to a mass of scar tissue so unless I want another surgery I have to eat this way forever) and you have been through way way worse than I have-----I know that I held all my emaotions in for a lond time and just in the past few weeks let myself cry and man did that feel good--let yourself do whatever you need to do to heal. Make sure you talk about how scared you were/are, how frustrated you are with the healing process, the ileostomy, the boredom, etc., if you mad at the doctors, the hospital anything that is making you angry...... It just got so overwhelming for me...barely eating, having multiple blood clots, having most of my hair fall out from the overdose of blood thinners, peeing every hour even at night b/c my bladder is now screwed up for the rest of my life from the accidental cut the surgeon made......so my advice is get all your feelings out there..you will heal faster....I feel so much calmer now that I finally let myself cry about it.

Is is going to be a long haul--getting energy back seemed so easy for everyone on this board.....you are right. You're body had been through major major trauma and needs a lot of healing time. I know I am probably not saying anything that is making you feel any better, I wish I had some magic answers, I think everyone wishes they had that kind of power to make people feel better. But Amira is right on....feeling better will come in time...it really will. Slowly but surely you'll notice small differences like it doesn't hurt to walk down the stairs anymore......make sure you congratulate yourself for small steps--I know it sounds dorky, but it is important to feel proud of your progress. Just think of all the progress you have made so far.

Take care
Sara

Hey,
I just wanted to stop by and say hi to mom! I love you and I can't wait until Friday to see you again. I miss you so much and I wish I could be there for you 100 % of the time... But I am thinking about you 110% of my day. Everybody I know knows about you and wishes you their best!
I gotta go finish up some homework.
Love you,
Tiffany

Hi--I hope Mary's surgery went all well this morning and that she is doing just fine :)

Amira I have some, not all, of my surgical report but don't see anything about seprafilm in what I have.....I like you had two previous surgeries, one on my stomach and one colon resection with anastamosis. In the scans the GI has done recently he said the scar tissue looks like it is from the drains that were placed in my abdomen. I had two JP drains that were needed b/c of the damage to the ureter and bladder. That scar tissue from the drains is what is causing the problems according to him --In the places where I had those drain I have adhesions on the outside of my small intestine which have caused kinks and it is hard for food to pass through. So I am back on Miralax and a drug called Motilium which is not approved iin the US but my doc gave it to me anyway and I love it! I still can't eat much, but it makes things pass through the kinks much faster and without all the spasming. Things ljust kept getting worse as time went on so I am glad my GI figued ou the problem...I guess the scar tissue can still get worse so he wants me to eat my food in liquid form as much as possible to avoid a complete obstruction b/c I've already had 2 partial obstructions in the past month and 1/2. So I am super happy to have this drug motilium! It just took a while to get here from Australia!!

Hi Cathy--hope you're getting some rest and could get a bit of sleep last night.....Sleeping is a tricky thing after surgery.
Please let us know how you are are don't be afraid to let out your frustrations here to us!! Ok!!!

sara