Total Colectomy Part 14

Thanks everyone for your encouragement about my navels I found out yesterday what too heavy was. I went to Wal-Mart to pick up groceries (we were out of practically everything as I had not gone to the store for 8 weeks!) and I picked up 3 cases of water. Oh my gosh. A case of 24 waters is too heavy. So I was really hurting last night...not smart. I guess I will have to turn in my cape as I'm not 'superwoman' any more.

Tracy-After you had said that you flew to Virginia, I got the bug to see my grandson, who is now 2 1/2. He lives in Colorado and I haven't seen him since September. So I got a ticket and I'll be leaving on Monday. Did you have any problems handling your luggage? How did you do on the flight? Were you sore from sitting in one position for so long? I just had to get out of the house (cabin fever) but I don't want to crash and burn when I get there. Any suggestions?

lam-Have you got the results back from your tests on your liver? Are you still passing dark stool? My doc said that I'm really runny from the bile salts. That is why they put me on Chloestyramine. I had some bleeding also but it was because I was so raw inside. How is your Dad's treatment going? Are you in Texas or at home right now? You're still in my prayers.

enpointe-How are you doing? I hope that you're feeling better. Did they ever give the bad bug a name that had gotten into your small intestine? I hope that you're having a great day and are 'up on your toes' again. I've been thinking about you too.

Stuck42long and PhyllisB-I'm so glad that both of you are posting. You have a wealth of info as you've already 'been there, done that'. This has been a tough surgery but it is so awesome to talk to people that have been there and really care. Please continue on!!!

You know, I've come to the realization that unless someone has ever suffered with chronic constipation, they just can't relate - doctors being #1 - It amazes me how GREAT I feel just a little over 16 weeks out!!  At the eight week point I was still very cautious and tender.  Believe me when I say, for those who are just about six/eight weeks out, You'll be AMAZED at how good you feel in another eight weeks!!!!

I'm so blessed to have all of you in my life and if I can help in any way - it's truly my pleasure!!  It's a wonderful thing to finally meet people who can relate 100% to how bad life/health was prior to surgery and how good it is now.  Just know that it gets even better with time!!!  Gosh, I can't even imagine how good I'll feel when the full year is up that it takes to fully recover !!!!!!!!!!!!!!!!!!!!!!!

TRACY - Thank you for your kind words.  I'm happy to know I can boost someone's day!

I'm looking forward to continuing on with the rest of you on this thread.  As we already know, there are going to be so many more of "US" who will need to be encouraged and uplifted, as well as, brighten the days for those who have so many unknowns post-op!!

To me, the benefit of all this is the great friendships that we've all developed with one another!!

Have a great St. Patrick's Day 

Welcome home Resa,

Glad to hear you are doing good....

Resa- so glad to hear that all is going well for you!!!

Tracy

Hi Resa-I'm glad you're home and feeling pretty good. Just take it slow...the first couple of weeks I lived in my night gown and went from the bed to the recliner and vice versa. It felt good to sit in the recliner to stretch out my back muscles from being in the hospital bed. Although the first couple of days I couldn't sit for long. I'll continue to pray that your recovery will be smooth.

Tracy-thank you for the plane info. I hadn't thought of having to lift my carry-on over my head. So I'm going to check it in and just take a magazine and my purse with me. I will heed all your advice. I think I'll take some ibuprofen before getting on the plane so I won't be so sore later. Hopefully that will work.

To everyone else-I'll touch base with you when I get home on the 28th. Please pray that I'll behave myself and not overdo! I do promise not to lift my grandson as he is 35 pounds (this is going to be tortuous because I love to hug and kiss him!)

PhyllisB-I'll be thinking of you and pray that all will go well with your procedures on the 21st and 28th.

GOGENTLY - I know how hard it will be for you NOT to hold your grandson, especially when they stretch those little arms out for you to take them.  At the time of my surgery my one grandson was only 10 months old and when we had Christmas he was 11 months old.  That precious little boy would stretch those arms out for me and smile so big.  The other grandson was only eight months at Christmas.  He was content just sitting beside me when I would lay down.

Great advise for Resa - I also lived in my night gown for the first few weeks and you're correct, it does feel good to sit for a while.  I also found moving around (although slowly) really helped me.  I did get very restless just sitting and laying around (not to mention sort of achey in my hips).  I also recall by butt getting numb from sitting too long - I had to get up and move just to give it a workout and some blood supply LOL!!

I'm really going to miss your posts!!  You are so wonderful to keep me updated on everyone else.  You have a wonderful trip and enjoy yourself to the fullest!!  Can't wait to hear all about your SUCCESSFUL trip!!

JILLIBEAN - Like GOGENTLY, I hope you are home by now and doing good.  Please let us know.

BOOTY-BOO-HOO - When is your surgery scheduled?  Like GOGENTLY said, this can be a stressful time.  I hope you're reading the posts and it encourages you in one way or another.  It is a slow process, however, the end result is priceless. 

At first, for me, I was going anywhere from six to eight times a day, give or take a few here and there.  At first, pretty much anything I ate passed fairly quick, however, it's improving over time.  For the frist few weeks I ate light but that's because that's all I could tolerate.  I lived on instant mashed potatoes, Lipton chicken noodles soup, pudding, jello - just anything that wasn't heavy. 

I think going six times a day if really good and you're correct, those slower days, less than six, is A LOT better than pre-op!!  You will have slow days and that's OK, however, there are things that you can take that might help the flow, like stool softeners, magnesium capsules, prunes, Mott's apple just (100% no sugar added).  I also take Flaxseed oil softgels everyday.  I find that taking these things keep me going very well and they're something that can be taken everyday.  I go anywhere from five to seven times a day and I feel great and I'm thankful for each one of them.  I feel more comfortable being a little loose than having to bear down like I had to pre-op.  Also, if you like chocolate, try Hershey's SUGAR FREE dark chocolate for an additional boost.

I'm too familiar with the gas that gets caught up under the ribs, then travelling up to the shoulders.  It is due to the gas they used during surgery and it is quite painful.  I've had so many lap surgeries and have dealt with that in the past.  THANKFULLY I didn't have this problem during my total colectomy.  

My stomach was also pretty bruised for a few weeks.  Unlike you, my pain was in the lower abdomen region.  It was as if I had all my female organs back (what a shocker)!!  I hadn't had that type of pain since my total hysterecomy three years earlier.  In fact, the tenderness I experienced was for almost 12 weeks.  I guess my insides where having a hayday wondering where they were going to find their resting place LOL!

I found that getting up and moving right away was actually beneficial.  I think I had my first BM two days after surgery.  It wasn't easy being sore, but it did get things moving along rather quickly - especially gas.

I hope your recovery continues on the uphill.  I didn't have the JV drain, so I cannot relate to that one.  I guess I was very blessed.

JILLIBEAN - I'm so happy to hear you survived the "open" colectomy.  What is the difference between subtotal and total colectomy?  Is this why they did you surgery open?  If you still have some colon - what will it do?  I know for the total colectomy they remove ALL of the colon and attach the small intestine directly to the rectum because this is the only route of transit.  The 10-15 pounds of removed colon sounds like a lot, more like a total colectomy.  My surgeon didn't mention the weight of the colon removed, however, he did say he removed 5 1/2 feet.  The supposed 3/4 hours surgery took 7 1/2 hours and my surgery was done lap.  I also had a very large loopy colon, maybe that's the reason for the length of time of surgery.  They removed the colon piece by piece thru about a 2 1/2 inch incision. 

I'm not sure if doctors are monitored for prescribing pain medication, but I do know that what they were giving me wasn't long or strong enough.  I ended back in the hospital 10 days after surgery because what they were giving me wasn't enough.  After being readmitted and cleared of any complications, my surgeon told me that because I take several high dose medications everyday - I required stronger medication for a longer period of time.  Thank God he finally gave me something stronger for another week and a half!!

Thanks for sharing your ideas with us.  I think they're very good suggestions and will indeed help others about to have this surgery!!  I also think by you having your sugery open vs lap will also give others great insight, as I can only relate to the lap procedure.

Please keep us posted on your healing process.  I hope things go smoothly.  Just be patient in the healing process - it does take time!!!

Hi Booty

Don't forget that right before you go to hospital, clean house, get extra toilet paper, and do a big food shopping so when you come home you won't have to think about it....

BOOTY-BOO-HOO - I'm so happy to hear that you decided to claim your life back!!  It is truly the best decision you could have made - It sounds as though you have all your ducks in a row, great job.  Phyllis gave some really good additional items to purchase and she's right - DO clean house BEFORE you go and STOCK UP on the groceries.

It's only normal to be nervous, but you sound optimistic and that's GREAT!!  I must agree that having support and information from people that's already been there and done that helps more than ANYTHING!!

I would discuss the abdominal support with your surgeon - I don't see what it would hurt and would probably be helpful with your two young boys, but you must keep in mind that you're not going to be able to lift and carry them, so I hope you have help with them for a minimum of a month.

Regarding your sex drive - I can agree having a bloated and painful way of life pre-surgery kills ANY type of drive.  You will have new found energy so I'm sure this will help you out tremendously, however, it will be at least 16 weeks, at least it was for me, before you feel "NEW" - healing does take time and everyone is different. 

JILLIBEAN - Thanks for the information regarding subtotal vs total.  I will say that my surgeon called my surgery TOTAL and it's the same surgery you had - they removed my entire colon and attached the small intestine to the rectum - wonder why if there really is a difference.

How did you do getting the staples taken out?  I hope it was as painless as possible!  I know that in the first three weeks post-op I lost about 25 pounds and then an additinal five pounds week four.  I'm about 17 weeks out and I've only regained the last five pounds back (I hope no more comes back LOL)!

It really does make sense that the colon weighed sooooo much - I know that mine was also extremely large and loopy, but don't know how much it weighed.  My surgeon did tell me that the average colon is about five feet long - mine was five and a half feet and that's why my three to four hour surgery ended up taking him seven and a half hours to complete!  My colon must have really built up like yours, seeing I've had constipation problems since a toddler and I'm 44 now.  I only wish I knew about this type of surgery years ago!!  Surely being TOXIC for so long wasn't good on the rest of the body.  I do hope that you've been healed and won't have returning firbo systems. 

The good thing....you will continue to feel better each passing week, so that's really something to look forward to. 

WHAT DO OTHERS HAVE TO SAY  REGARDING SUBTOTAL VS TOTAL COLECTOMY?  Just very interested why some surgeons deem it subtotal while other deem it total.  This should really make for good discussion!! 

You know, I put out a post last week for anyone who would be interested in chatting outside of this thread, as I know there are some personal things some don't feel comfortable posting.  I was so blessed to have found a wonderful friend that has help me in more ways than I can thank her.  This invitation is open to anyone and you can obtain my e-mail address by clicking on my name.

May God bless and keep all of you - Depend on Him and He will guide your path!!

I do know how easy it is to get depressed because we're not feeling good for such a long period of time.  The first thing to remember is this WAS a HUGE surgery and it does take TIME to heal.  You are only three week post-op and that's still VERY SOON!!  I'm just now about 17 weeks out.  Up until a few weeks ago (3) - I still wasn't feeling 100% - actually only about 80%.  Another thing to remember is that everyone is different, each with their own time frame in the healing process.  I can remember thinking that I should feel better when I was three to four weeks post-op - as I'm no stranger to surgeries and this really was the hardest thing I've ever experienced.

You're doing the right thing getting up and moving - it will help in your healing process.  It gives us the strength we need (little by little) so keep that up.  I also had a very difficult time sleeping for weeks after surgery.  I too have NO female organs and this is the area  where I felt the most tenderness and discomfort, along with those sharp/shooting like pains.  I firmly believe that those sharp/shooting pains is our body trying to heal on the inside, as well as, readjusting to NOT having a colon anymore.  Was your surgery open or laparoscopic?  THIS WILL GET BETTER IN TIME and it won't be tomorrow so please be patient!!

I didn't have any issues with night sweats, however, others here have.  I'm hoping those that experienced this will give you their input on this.  So you're not alone on that topic either.

There are a few things you can do to get "things" moving.  I drink Mott's 100% no sugar added apple juice.  I will also take a couple of stool softeners, as well as, magnesium capsules.  You can get these anywhere.  Another good thing to consider is sugar free chocolate.  Hershey makes sugar free dark chocolate and it's very good (any sugar free candy should work if you don't like chocolate). Also try Sunsweet prunes.  They have cherry flavored and they are very tastey.  These things can be taken without worry and they can be used daily without hurting anything. 

I can totally relate to you not wanting to get out and socializing, me fearing the same issues as you.  MORE GOOD NEWS - it does get better.  By no means do I go out to eat and then go shopping - I'm not that far along, but things don't seem to want to go "straight" thru like in the beginning.  I do get out and about a lot more now, but I WILL NOT eat until I get back home - just me being on the safe side.

I hope this helps to cheer you up - it WILL and DOES get better - it's just a long process.  If you've read any of these posts here you will notice that we all have regained our lives and if it takes three or four months - that's better than the years this condition has taken from our lives.  Most will agree (in fact I think everyone) with me - we would do it all over again in a heartbeat!!!

I look forward to hearing your progress and I hope others will inspire you with their experience.