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Total colectomy Part 16

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Posted 8/19/2007 2:56 PM (GMT 0)
confused  MICHELLE - I just sent you an e-mail.  My heart just breaks for you sweetie.  I wish there were something I could do to help, anything, during this difficult time in your life.  Please feel free to e-mail me anytime!!

BIG "Hugs" your way!!

Posted 8/19/2007 5:48 PM (GMT 0)
stuck-

thanks for your reply! i am going to try the different things you recommended and hopefully that will help. can you tell me, did you have any weight changes after the surgery?? i lost about 10 pounds in the hospital and i am wondering if i will lose more or gain more, what happened with you?

thanks again for your responses, i dont know what i would do without this board!

Posted 8/19/2007 6:13 PM (GMT 0)

Hello to everyone.. I am finally home.  I was in the hospital for two weeks as I was so nauseas and couldn't eat.  I was also on the cardiac floor as my heartbeat wouldn't slow down and I couldn't breathe.. I have to remind myself to breathe deeply.

It's great to be home with my kids.  I was able to eat 1/2 muffin today.. Yeah.. It's a major accomplishment.

I am trying to walk, walk, walk, but am really stiff so going slow and steady.  I'm going to be a turtle for quite a while it feels like.

Yes, you all are right.  At times I feel like a couple of trucks have ran over me..  I ended up having open surgery instead of laproscopic...Ouch, but I'm alive and am going to make it thru this tough time..  That's what everyone tells me anyhow..

I will hold you all in my prayers as I can see that we are all in different stages and rough patches..  I love you all very much.

Lori

Posted 8/19/2007 6:17 PM (GMT 0)
Glad your home Lori....How is the bathroom? going often? Don't worry about being a tortoise...in a few weeks you will be a hare..

Take care
Posted 8/19/2007 8:25 PM (GMT 0)
Amey,
I'm so happy that your surgery went well and that you're finally home with your family! You're lucky that your stoma started working quickly. Mine took 10 days to work, and the doctor wouldn't let me go home until that happened.

I use a two piece appliance from Coloplast. The wafer is extended wear #2833 and the pouch is #13986. I put in a few capfuls of hydrogen peroxide as a deodorizer each time I empty it.

It's not necessary to clean the pouch out with water, because it will just get poopy again. The stoma is happy and comfortable in a poopy environment, so you don't have to worry about keeping it clean.

I usually put on a new wafer about once a week, and clip on a new bag about halfway through the week. You'll know when it's time to change everything.

Go ahead and swim as often as you like! The wafer will stay on.

Again, I'm really happy that you're home and doing well. Now you can eat real food again! yeah

Cecilia
Posted 8/19/2007 9:11 PM (GMT 0)
Lori,

You have been on my mind constantly.  I was truly worried when I did see a reply from you for a while.  Like you, I was just released from the hospital on Saturday (after a 15 day stay) and I am very slow.  I refused all pain meds immediately after surgery so I could focus on being alert and walking.  Today, I am 4 days out of surgery, and I feel much stronger.  I do not have an appitite at all!  I have to force myself to eat a 1/2 peice of toast for breakfast and a couple bites of mashed potatoes for lunch.  I am sure when my body is ready for food, my appitite will come back.

 

I am so glad that you are home.  The best feeling was to curl up in bed under my own covers last night and have my hubby next to me. I never wanted to get out of bed. I am sure you can relate!! :o)

Cecilia,

Thank you for your replys.  How was your trip to your sister's?  I was hoping I was going to get a chance to see you in person, but at least you posted your photo at photobucket so that helps.  I am hanging in there.  I have to say...I do not love my stoma.  I am sure most people feel this way at first, but I am adjusting.  I have requested a home health care nurse come into my home this week and help me.  I have all kinds of questions and concerns and I really need some personal help...for example, my skin slightly burns under the wafer.  I changed my bag and wafer, took a shower, and cleaned the area well the pads; however, it stings worse.  I need someone here to help me know what to do.  I tried to go without anything for a couple minutes and quickly realized that I had to rethink that idea...yuck!

TO EVERYONE:  You all have no idea how much you have blessed my life.  I did not expect to have a surgery when I went to my GI doctor.  I was going through my routine life and now, two weeks later, I am on a bag.  I have relied on your support to carry me through this time.  THANK YOU, THANK YOU!

Posted 8/20/2007 12:07 AM (GMT 0)
Amey,
I had a good time at my sister's. Her daughter turned 8 and had some friends over on Friday to eat pizza and watch the High School Musical 2 premiere on the Disney channel. They beaded hair and painted nails. It was cute. How old are your children?

I was going to stop by the hospital to visit you on my way home this morning, but then I read that you were already home. It would have been fun to meet in person, but I'm thrilled that you're out of the hospital. I was in for 2 weeks also when I had my surgery and remember how wonderful it was to be back home in my own bed curled up next to my hubby. :-)

Having a stoma does take some getting used to. They have No-Sting products and powder that you can put on your skin to help with the stinging, and they make wafers for people with sensitive skin. You can do a Google search to find a variety of products that you can try out. If you call the manufacturer, like Coloplast or Hollister, they will send you free samples.

I'm really happy that your small intestine is moving things along. You will get your appetite and energy back soon. Do you have a favorite food that you've been missing? Maybe your hubby can fix it for you. Make sure to let yourself rest when you need to, and drink plenty of water.

Cecilia
Posted 8/20/2007 12:19 AM (GMT 0)
Cecilia,

It sounds like you those girls had a blast! My daughter is 9 and she loves to have tea parties (with apple juice, of course) and play make-believe. My son is 11 and he is perfectly happy sitting in his room alone with a huge bin of Legos. As far as foods go, the only thing that sounds good it light fruits...grapes, watermelon, pineapple, strawberries and such. We have a huge bowl of mixed fruit in the fridge but I am not sure if I can eat them so I have only had one bite here and there. However, I really want to sit down and eat more. I am suppose to be on a low residue diet for a while and I do not think that includes fruit.

I will call a couple places tomorrow to see if I can get some samples of No Sting products. Thank you for the info.

Would you happen to know if there is a product that keeps stool from sticking to your stoma? My nurse said that some people put mineral oil on their stoma to keep things from sticking but I have not tried that. My wafers are only lasting 2 days because the stool is collecting at the stoma and eating away at the wafer.

I appreciate your help.
Posted 8/20/2007 10:02 AM (GMT 0)
Amey,
My brother's 10 year-old, twin boys love Legos, too! Their favorite are the Star Wars ones, and they also like the PlayStation 2 Star Wars Lego game.

I looked it up, and fresh fruit is allowed on a low residue diet. :-) You can have canteloupe, honeydew, watermelon, bananas, and other fruits without their skin, like peaches and apricots.

I use a product called Stomahesive to keep stuff from getting under the wafer. It is a caulking paste that you put around the hole that you cut in the wafer before you adhere it to your skin. It works really well and keeps things from leaking.

Hope you have a good day!
Cecilia
Posted 8/20/2007 2:20 PM (GMT 0)
Hi Eveyone,

Amey, I just got to tell you that you are my hero..Things did not work out the way you expected and even though you had to have an ileostomy I admire your determination to get on with your life. Your courage and strength are your blessings.
I just had my flex sig and it was not painful at all except when the scope went in past my inflamed hemorrhoids.
In any event he saw small ulcers in the blind puch of the colon. Anastomosis looked good as did the end of the small intestine. He took biopsies of the ucers. I now have to take flagyl and medicated enemas - mesalamine.
I have to do the best with the enemas as I have 12-15 BM's a day but as long as I maintain it for at least 1/2 hour that will be good..ideally it should be retained overnight....

Hope everyone else is okay...
Phyllis
Posted 8/20/2007 2:53 PM (GMT 0)
Phyllis,
You are too kind. I am so glad that your colectomy has gone so well for you and that your ananstimosis has healed well. I hope your biopsy results come back soon; did he give you a time frame? Good luck holding your enema. With your BM schedule, this could be quite a challenge.

Cecilia,
You should write a book..Ileostomy 101. You certainly are a plethora of information! Thank you researching fruit for me. It felt good to eat a little honey dew this morning and not feel so concerned.

Have a wonderful day ladies! :o)
Posted 8/20/2007 3:45 PM (GMT 0)
:-)  Hi Amey,

I am so glad to hear you are doing well and coming home.  As for all

your questions, sorry I can't help you there.  But I'm sure you will

get alot of answers through this forum.

As for me I'm going back in the hospital today, I've been to the ER

twice in the past two weeks and now it's time to get serious.  My

surgeon was away for 2 weeks so I went to a different hospital, but

I'm not getting any better so it's back to the big one. Robert Wood

Johnson in New Brunswick, NJ.  I have had diarehea for two weeks and

lost at least 12pd. I have stomach cramps and pain, and my butt is

so sore.  When I went to the ER the other times they could not put

a IV in because I have so much scar tissue and no veins.  One doctor

had to use a ultrasound machine to find a vein, then the next time

they put a IV in my neck that hurt.

I'm scarred this time I know I will have to stay a couple of days and

the hospital is so far from home.

I hope they are able to put a pic in me so they don't have to keep

sticking me.  Well I gotta go pack. Just wanted to check in with

everyone and to find out how you were doing Amey.  Again I'm

glad you are on your way home.

Peace,

Apri

Posted 8/20/2007 6:31 PM (GMT 0)
Hey Everyone! I haven't posted in a while, but I have been trying to keep up on how everyone is doing. I am glad that everyone came through there surgeries well. I am close enough to where I am starting a count down to mine. I went in last week for my pre-op and had a small scare, they made me retake my anal monometry test because my first one wasn't too good. But I passed, not with flying colors, but I passed and my surgery is a definite go. I just wanted to say how wonderful it is to have such a huge support system. I feel very blessed to be able to talk and get advice from such knowledgable and caring people. It is truly wonderful.

Lori and Amey, I hope y'all continue with a good recovery, and I hope it goes by very quickly. My most sincere prayers are with you both.

Posted 8/21/2007 2:10 AM (GMT 0)
Hi Everyone...

Has any one developed proctitis and/or ulcers post operatively and if so what course of action was taken and what were the results..

Thanks

Phyllis

Posted 8/21/2007 2:55 AM (GMT 0)
April,

I read your post and it reminded me so much of my own trials. Although I hate this bag, it was so nice to throw out my assortment of laxatives and suppositories. I hope you find helpful information. I cannot imagine having an IV placed in my neck. That sounds so painful. My heart breaks for you! Do you know your options? Is the surgeon willing to help you? I will say a prayer for your tonight. I am so sorry you are having to go through such a hard experience. Hang in there. I am sure answers are coming....

Take care,
Amey
Posted 8/21/2007 9:49 PM (GMT 0)
Hi Everyone

I had my surgery on the 9th stayed 6 days in the hospital I had it done lap. And I am doing great I feel like a new woman recover is going great I owe it to my mom, my man, and my kids. I even drove myself to my check up today.

Lori

I'm sorry to hear you had to have it open. I'm glad your home I know your mom hubby and kids will take great care of you as mine did. Your in my prayers

Thanks to everyone for the kind words and prayers

Posted 8/21/2007 11:31 PM (GMT 0)
Hi Kinberly,
Glad to hear everything is going well. If you think yoy feel great now, wait justt a few weeks. You won't believe it could get better....
Posted 8/21/2007 11:34 PM (GMT 0)
ROSE - You're more than welcome!!  Regarding weight - I initially, within the first three weeks post-op, lost 30 pounds.  I'm sure my extremely large and loopy colon weighed at least half of that weight.  As time has gone by and I'm able to eat more of the things I did pre-op, I've regained about half of the weight and I'm nearly 10 months out.  I would like to lose the weight regained plus and additional 15 pounds. 

LORI - I'm so happy to hear you're home and on the road to recovery.  So sorry to hear you had an extended stay in the hospital and ended up having to go open.  I can recall, as if it were yesterday, moving very slowly for the first several weeks and mine was done lap.  I'm proud of you for walking even if it is very slowly.  I know it's hard to see right now but you will get better with each passing day.  Take your time healing and don't get discouraged.  It was a good 12 weeks for me to feel "normal" with regained strength and 16 weeks before i wasn't sore and tender anymore.  I'm thinking that because I had a total hysterecomy four years ago and seeing I no longer had the 5 1/2 feet of dead colon inside my body everything else on the inside of the abdomen was like "where do I take up residence" LOL!!

CECILIA - Thank you for all you help, support, and encouragement.  You've truly been a guardian angel to Amey, as well as, others!!  Your life experience and wealth of information is priceless!!!

APRIL - Please know I'm thinking of you and I wish you all the best!!  I also had to be readmitted into the hospital two weeks post-op due to A LOT of pain and discomfort in my belly region.  After two trips to the ER within a 48 hour period and two CAT scans my surgeon started looking into where they connected the small intestine to the rectum to rule out a blood supply issue.  Thank God it wasn't anything serious, just that my body has a very high tolerace to medication and what they were giving me wasn't strong enough.  Although everything I pretty much ate went straight thru for the first several weeks post-op you're situation with extreme diarehea is different but the pain part I can totally relate to.  Pleas keep us posted!!!

AJ - I'm happy to hear your surgeon took the time to redo the anal manomatry test.  It's better to be safe prior to this surgery than to be sorry after, especially seeing that it plays a major roll in the outcome of your surgery.  So, when is your surgery date?  I must agree that all the caring and helpful people here are a blessing.  I don't know what I would have don't without them!!

AMEY - You continue to amaze me with your optimism!!  You were definitely dealt a different hand than expected and you've taken the hand given you and making the best out of it.  God bless you!!  You've been thru so much in such a very short period of time and it blesses my heart to hear you're holding fast to your faith!!!

KIMBER - I'm extremely excited that all went well for you and you're feeling and doing great!!  Yes, you are a new woman and I hope you continued success in the healing process.

MICHELLE - You hold fast sweetie!!  I got your e-mail and please feel free to e-mail me anytime!!   

Posted 8/22/2007 11:57 PM (GMT 0)
Hi Everyone,  I'm home from the hospital, everything turned out ok no major problems.

My doctor thinks I just had a bug, all tests came back ok. They gave me IV fluids,

which they were able to get a small line in, it only lasted for a day it blow!!!!

So instead of giving me a pic line they made me drink alot of fluids and gave me

lomotil and questran.  Has anyone ever been on Questran? This hospital stay was

not that bad, but they did screw up my meds.  They can never get that part

right. At least I kept double checking every time. Thank you so much for caring

and responding it mean so much to know there are others out there who understand

what we go through.  THANK YOU :-)

To Kimber & Lori:  So glad to hear you are home and everything went well.

Amey:  Always thank you. How are you feeling?

Peace,  Apri

Posted 8/23/2007 12:05 AM (GMT 0)

Hi April - So happy to hear all is OK and they didn't find anything more serious!!  I've never heard of the meds and I hope they continue to work for you!

I also got a "BUG" about three weeks out and of course the first thing I thought of was "something is wrong" - called the surgeon and started taking PEPTO and it helped.  If you do use PEPTP - it makes the stool lool black but that's normal - just a heads up.

Posted 8/23/2007 6:23 PM (GMT 0)
April

I'm glad to hear your doing better and able to be at home. I had the same problem with the veins when I went in for the surgery they poked me 6 times before bringing in the ultra sound machine and what stinks is I told them from the begining they wouldn't be able to get the vein. But what do I know its only my body their the pros right..lol

I hope you continue to feel better

Posted 8/24/2007 3:28 AM (GMT 0)

I had a TC in March of 04 due to Chronic UC.  My small intestine is connected to a jpouch created with my small intestine and connected directly to my rectum.  I have to say that I consider myself 100% healed.  I've had bowel obstructions and infections along the way, very acidic bm's that sometimes inflame my rectum and skin around it.  I treat the nerve endings with lidocaine which has been a miracle drug for me.  Without it, I'd miss a lot of work and life in general!  I have to watch my diet, I can't tolerate red meat very well, raw veggies, onions and red peppers, etc..  Mostly high carbs go the smoothest, causing my weight to go too high, but small price to pay for my life back. 

It took about 6 months before I felt I could "hold it in" without fear of having an accident.  I still don't go anywhere without first noting where the bathrooms are, and am very careful with what I eat if I am on a plane, or a long trip.  I now go 5 to 10 times a day (24 hours).  I can usually sleep as long as 4 hours before I have to get up and empty my pouch.  I'm experiencing some pouchitis right now, so I'm going more often, but once I get that under control things will settle down.

I'm too tired right now to make much sense, but if anyone has a question, I can try to answer from my experience.  I'm so grateful for a site like this.  I never knew of these when I was sick.

In Him,

Avent

Posted 8/24/2007 11:11 AM (GMT 0)
Hello, I am new to this site and wish I had found it prior to my colectomy.  I am now 6 weeks post surgery and have been having a lot of difficulties with pain and bleeding each time I have a BM which is aprox 5 to 10 times a day.  I have been told that I have a partial rectal prolapse and possible fissures.  My DR tried to do a sigmoidoscop but was not able to due to the extreme pain. (they did not freeze or sedate for this)  I am waiting for a date to have sedation to have the proceedure done.  Has anyone else had this problem and if so what was done to correct it?  Also, I have had quite a bit of discomfort under my left rib cage since the surgery.  It kind of feels like a ball is stuffed under it and sometimes will almost take my breath away when walking.  Again...has anyone experienced this?

Thanks

Jackie

Posted 8/24/2007 1:17 PM (GMT 0)
Hi Everyone,

Avent and Jackie - Welcome. I think you will find people here very helpful and informative.

Jackie - I had my TC in March 07. I sometimes have a slight pain in my left side. My surgeon said for me it is because I am still healing. Some days I do not feel it at all and others it just feels like a cramp in my left side. I have a BM anywhere from 5 to 20 times a day. Sometimes I have bleeding but that is because I have hemorroids. Other than that I cannot really help you.

I have a question. I do not know if this is happening because I go to much or what, but has anyone else experience lightheadedness and nausea and what did they do to get rid of it? For the last two weeks this has been happening. If I move my head to the side, down, and or backwards I feel like I am going in circle and about ready to fall. If it doesn't let up soon I think I will call my PCP.

April, Amey, and everyone else I hope you are feeling good and healing.
Posted 8/24/2007 3:57 PM (GMT 0)

Hi Resa,

I just wanted to tell you not to assume your bleeding is from hemorrhoids....I too go 12-15X/day and had bleeding.  I just had a flex sig and doctor found small ulcers, pouchitis and proctitis for which I am taking flagyl and medicated enemas.  Please speak to your surgeon or GI guy to make sure it is just the hemorrhoids.

Take care everyone

Phyllis

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