Total Colectomy Part 14

Jillibean

Hello my friends. I sure do enjoy reading all the posts, and seeing the regulars responding with such love to us newbies. Maybe I'll get to remember everyones names and post more personally to each of you.
Yesterday was the day I had my staples removed, and that didn't hurt at all. I was impressed. Today, I saw my GP for my post op physical. I had him draw urine, blood, etc. I had been running a low grade temp. Sure enough I have a bladder infection, probably from the catheter in the hospital. My hemaglobin is still low, at 10.2, but that's better than the 7.8 in the hospital. I had my sweet husband pick up some iron tabs to take, and my antibiotics for the infection. Also, my sederates? were 105, and above 50 means inflammation of a significant problem. Either it's high because I have just had major surgery, and have lots of inflammation, or I could have an infection in my tummy. He will check me again in two weeks, but I am to let him know if my fever goes up, more pain, etc.

He told me that a non-functioning colon is life threatening. As my mom says, I was painted into a corner...having this surgery, although called, elective, is truly the only choice. Hearing my doctor speak of it being life threatening to have a colon not functioning, brings it home. I just feel badly for the people out there who are still suffering with severe constipation, and don't know about this surgery.

Tonight I am not real tired, and may snooze in the recliner. Hopefully I'll get tired and go to bed with hubby, soon. All is quiet in the house. Even the cats are snoring.

Take care, all.

Hi Everyone,

Nwabit - I'm sorry to hear you are having second thoughts about having the surgery done. open surgery is hard and it takes time to heal.

Jillibean - good to hear you are feeling better and that your staples have been removed (no pain) to have that done.

Stuck42 - thank you for your post. They are so encouraging to others.

Yesterday I had my alien friend removed. I hated that drain. I feel a lot better not having to carry that with me any more. It didn't hurt like I was preparing for -- it actually tickled coming out.
When I saw my surgeon yesterday he told me that he removed over 6-1/2 feet of colon. He didn't weigh it but he did send it to toxicology to test it. He said it had nerve damage throughout and muscle damage throughout. In some areas the muscle was very weak. When he said that my first thought was "rupture" ready to happen. They say this is elective surgery but I was always concerned with the possibility of it turning into a life-threatening ordeal and I didn't want that to happen.
The only real pain I have felt since surgery was the low back pain for 3 to 4 days and the gas pain under my gallbladder that shot up to my shoulder. When that went away in a day or two I have no real pain. Just discomfort in my tummy area -- soreness. I am a bit tried so the surgeon gave me some iron tablets to take for a month. He said I should not have anything with added iron because that would be too much.
In a (24-hour period) I am still having one to eight BM’s a day. They are small but then I am not eating a whole lot. I don't feel like eating that much. Since the small intestine is still learning to do both jobs, I do not feel comfortable eating big portions right now. When I eat and all day I drink water, apple juice and grape juice. Today I am going to add 4 to 6 ounces of prune juice. The foods I have eaten to this point are -- chocolate and vanilla pudding; eggs, bread, tomato, tomato sauce; chicken, real mashed potatoes, mix cooked vegetables; oatmeal; cream of wheat; decafe; milk; clam chowder soup; tomato soup and none of these foods have caused a problem. Surgeon said only food to stay away from for a while is Fat and red meats.
I wish I knew about this surgery along time ago. I know what caused this to happen and exactly when it came to be with me. I was 35 years old. I am now 56 years old.
I am 10 days post-op and no complications. I am almost afraid to say that. I did have a Charlie Horse this morning and my calf still hurts. In previous posts I mentioned that I had this horrible pain in my left leg that run down the side from pelvis to knee. I got several diagnoses on this pain. Since surgery I have not felt it. Again I am almost afraid to say that. Another thing that I worried about was menopausal symptoms setting in. Didn't have them before and to this point they have not set in.

Time to get up from this hard chair. Everyone have a good day.

k... its another day and I am feeling a bit better.  I think that the walking is helping.  Things have loosened up considerably! I have read some of the other posts and it is interesting how everyone is different but the same?? I know that sounds wierd. I am feeling more patient today and I know that this is all in Gods time and not mine but I have to admit that I was mad at him for a few days.

Thanks to you all

Wabit

Hi Everyone....

Glad to hear everyone is doing a bit better....Sometimes G-d does give us burdens that are too much to bear but that's were family and friends come in to help ease the burden...

PHYLLIS - How are you feeling?  I hope you're getting better by the day!!  You couldn't be more right - having family and friends to help us in our times of need is such a blessing.  I believe the friendships I've made just on this thread have been my greatest blessing, not to mention, being able to help others who have so much fear, doubt, and questions!

RESA - Thanks for clarifying the type of procedure you had - I do hope that your incisions begin to look and feel better.  Are you running a fever?  I sure wouldn't want you to get a bigger infection within these places.  Just keep up with the cleaning and ointment.  Did the potassium tablets help?  Yes, be sure and get those bananas too!!

Oh, I know what you mean when it comes to laying down on your side - it's just about impossible to get comfortable in any position for several weeks.  I think the reason those cat naps come on and feel so good is because we really don't get much REAL rest for weeks. 

Keep up the walking and keep doing what you're NOT doing (pull, lift, or pushing anything)!

Another questions, doesn't it amaze you that the surgeon was able to remove so much colon from such a small incision?  My incision was about the same size as yours, but, it was on the lower left side of my stomach.  The only thing I had in the navel was the scope, then the three small incisions for the ports (equipment) and then the biggest one for removal of the colon.  I also DIDN'T have a drain (thank God)!  I do remember a very little drainage from the naval and just keeping in clean and dry really helped.  If I remember correctly, I used peroxide to help dry it up some, then put the ointment on later (some things seemed to have faded already LOL).

OTHERS - I'M THINKING OF ALL YOU TOO!  SURVIVING - HOW ARE YOU?  GOGENTLY, I'M MISSING YOU AND HOPE YOU'RE ENJOYING YOUR TIME WITH THE GRANDBOYS!!

IF I'M MISSING SOMEONE - I'M SO SORRY - BUT WOULD LOVE TO HEAR FROM EVERYONE!

 mwabit - Great sense of humor - that's a sure sign of getting better!!  Glad to hear you're feeling better and not so tired - you will be sore for quite some time though.

Hopefully the surgeon didn't wear his clown suite or red nose during surgery LOL!! 

My first thought after coming out of surgery was "WOW" what a small incision to take out so much colon - I'm almost positive they dissected it, however, your "image" sounds like the humor we needed after surgery!!!!

 Hi Jillibean - My story is a long one, so I'll try to be "quick and to the point" - I suffered from constipation from a toddler - 15 months old - I'm 44 now.  The doctors told my mom way back when that I would have colon problems my entire life (that reality held true for all these years).  Anyway, I had my total colectomy "laparoscopic" on 11-09-06.  My surgery was long, 7 1/2 hours and my hospital stay was only four days, however, I was readmitted 10 days later for severe pain for three more days (I tried to tell my surgeon that all I needed was stronger pain medication - I have a high tolerance for pain and medication).  He wanted to make sure that there wasn't a blood supply issue from where they connected the small intestine to the rectum (thank God that wasn't the culprit).  He was finally convinced  that all I really NEEDED was stronger pain medication and then and only then did he prescribed it (thank God)!!

I guess the reason I feel so dedicated to this thread is because so many people here helped me sooo much with answers, support, and their experience - thing I could relate to (I will forever be grateful to God for placing one specific women, Jody, in my life at just the right time - His timing is PERFECT)!!!  She will forever be a part of my life and a dear friend.

I sort of feel lead by God to stay here to help others any way I can.  My recovery was really long (a good 12 weeks before I felt somewhat normal and 16 weeks before I was completely pain and tenderness free).

Just knowing we have people who truly care and encourage us - who've been there able to relate, well, that's a blessing all in itself!!!  I also LOVE meeting people and creating friendships that will last for a very long time.  That's why I've permitted my e-mail address to be available for anyone who would like to talk outside of this tread.

THAT'S MY STORY AND I'M STICKIN' TO IT - LOL!!!!!!!!!!!!!!!!!!!!!!!

WOW - I'm sure you were really scared the other day, having trouble breathing and not knowing what was going on - I know I would have been scared.  Thankfully you went to the hospital by ambulance and they could determine quickly that your lung had partially collaped.  If you would have gone to the ER on your own - you more than likely would have sat in the waiting room for hours before they even took you back to get checked out.  I'm so happy to hear you're doing better and the breathing exercises are helping.

My personal opinion on going back to work - even for a few hours - I think two weeks is TOO SOON!!  You DON'T want to push yourself too soon - your body needs time to heal to avoid scar tissue forming. 

I can also relate to being in my own home in my own bathroom LOL.  You will notice in the weeks to come that transit time gets better.  I still won't and don't eat ANYTHING if I know I'm going to be away from home for hours.  I guess it's just one of my hang ups.

RESA - Jill's advise on tucking a pillow under your tummy is an EXCELLENT idea - I also did that and it really does help - forgot about that little tip. 

See how well we all work together - there is ALWAYS an opportunity to help someone!!

 

Good Sunday morning to all!!  I hope your day is filled with many, many blessings!!

WABIT - WOW - you have surely been thru it haven't you?  My heart really goes out to you and I pray that you won't be in that very small percentage range AGAIN!!  I do hope things CONTINUE uphill for you and everyday becomes newer and brighter for you.  I think you will look back in a few more weeks and be thankful you made the decision for the colectomy.  You WILL regain and claim your very ACTIVE lifestyle!!

Hope everyone else is doing good.  Please let us know.  I'm hoping to hear from those who haven't posted for a while. 

Savanared, I can't wait to find out...have the Fibromyalgia symptoms, pain, returned? Were you always working so many hours or is that something new. I have such hope regarding being healed of the Fibro, as well as the terrible constipation and toxicity, and I was moved to tears, as I read that you too, felt better than you did in years. Is this continuing for you? Ask me anything you want, as I'm not sure I answered your question.

My surgeon believes that I will have far fewer symptoms after this surgery. I feel soooooooooo much better!!! I am still feeling painful in my stomach, and today my lung felt painful as it did on the day I had the partial collapse, but I can breathe just fine. Otherwise, I am not having to take pain medication at all, like I was before the surgery for the Fibro. pain. Just a couple of Tramadol (not a narcotic) and Tylenol now and then.

Adviceseeker, I am so glad you found us. Yes, the surgery is tough, but the toughest part lasts about a week. Every day I got better and better. Mine was an open colectomy, and others have laproscopic which may be easier to recover from. I wouldn't change a thing about my surgery. Try to read back as far as you can, to hear more about our surgeries. Anyway, no you won't be set up for a life of diarrhea! Already, my stool is firmer, it's just nice and soft. At first, if there is a lot of loose stool, you would control that with Immodium. Once you were eating normal foods, (at 2 1/2 weeks, I'm eating normal, even raw fruits and veggies and grains, just no red meat as it is the most difficult to digest) the stool becomes somewhat formed. It just isn't (not to be gross) big logs or rocks anymore, it's smaller, like goose poop (sorry everyone, you know it's true )

Anyway, my stomache is no longer huge and distended and hard as a rock, but it's flatter and softer. I think I can even see more clearly with my eyes. I feel this wonderful emptiness instead of chronic fullness. I seem to have nothing of the pain which I had before my surgery. I feel more confident (totally), and I don't have to get into all kinds of wierd positions on the toilet just to get a bm out of me.

Can you see struggling with this horrible constipation as an elderly person? What if, God forbid, we ended up in a nursing home someday, and became all clogged up. I thought I'd have the surgery while I was young and could heal quickly.

Anyway, it really isn't a choice...it's like being painted into a corner with no other way out. Having a colon that isn't functional is actually life threatening. We need to poop. It is important.

Okay, off my bandwagon. I just don't want you to be afraid of perhaps finally getting the help you deserve. Now that the small intestine can be attached to the rectum and we need no colostomy bags, we are so fortunate.

Take care everyone! Until next time.
Jillibean

Hi Adviseseeker,

Welcome to our thread.  Please go back and read all 13 parts as there is a wealth of information.  It is a tough decision but as Jilli stated we do get painted into a corner....You are 26 years old...can you really face taking ducolax and continually increasing the dose so you get minimal relief...I am 55 and had this all my life....you take all kinds of meds, OT and prescription and it doesn't help so you lock yourself in the bathroom for 2- 2 1/2 hours and take enema after enema for some relief and that also starts a vicous cycle and relief is minimal..is this how you want to live your life....Do your homework...read all you can but don't get scared...make sure your surgeon is well qualified and that you are not on his/her learning curve....and then make your final decision....go in to see surgeon with written questions and be sure they are answered to your satisfaction...You must focus on long term results...Surgery is surgery...it hurts but now a days they are very concerned with pain control so don't fear that....I had my surgery in June 2006, laparscopic...I felt so much better immediately....initially I went 20X a day and am down to 10 or so...Mainly after eating...And although that seems like a lot, it is wonderful not to have a belly that looks 10 months pregnant and hard as a rock...My surgeon is hopeful that it will still slow down...I can't tolerate the immodium.  This sounds funny but I am thankful everytime I go....I can attest that the energy level goes up afterwards as well as mood is better....Many of us had GI docs and even surgeons who didn't believe that this is a problem...That's great you found someone who took you seriously and didn't think you were crazy.  Ask us anything...nothing is too embarrassing...and those who are post op are all willing to help those trying to make decisions or just need to vent...

Take care and welcome

Phyllis

Hi all

Forgot to mention about the diahrrea issue (yucky)    But not only is there immodium to help with that but also you can use simple things like metamucil or fiber sure.  This will help make the stool less watery....you may have to take it without the capsule according to how fast you eliminate....Also don't forget, it takes time for your small intestine to adjust to having no colon....so things do improve with time...and patience.  Also, it not as though your body doesn't give you warning that you will have to go shortly..so you can find a bathroom.  Sometimes we just have to get over our embarrassment and use "clean" public restrooms...many have the protestive plastic or you can buy your own and have with you at all times.

Its not surprising to hear that after surgery some other problems improve or disappear...they don't call it toxic colon for nothing..

Take care and enjoy the weather..

Phyllis

Hi everyone!

Welcome to all the newbies! Wow...I'm only gone for a week and what a lot of posts! I had a great time with my grandson. I did find that at 8 weeks postop I was just thoroughly exhausted at night but I think running after a 2 year old will do that to you   My son and his wife have a two story house and the stairs were a killer for me. I would stand at the bottom of the stairs and think, do I really need what's up there? On the bright side of things, the stairs did help to flatten my stomach a little bit.

PhyllisB, I remember vividly the short notices that my body used to give me presurgery! I wouldn't go for weeks and then it was like everything in my colon would liquify to sludge and come out at once...usually only giving me less than a minute to find a bathroom. That is why I hated to leave my house as I never knew when these lovely episodes would happen. 

I have found myself in some precarious situations...the worst being that I kept a plane from taking off by insisting that I had to use the bathroom 'then and there' as they were preparing to back the plane away from the terminal. I found out that they do not run the water while they are taking off...which meant a double whammy for me...not only did I keep the plane from taking off on time but the smell probably knocked out the last few rows of passengers   Needless to say I 'faked' sleep the whole flight vowing to myself that I would not fly again.

After flying out to see my grandson post surgery I can actually say that it was great!!! I got on the plane...minus the bloated feeling and actually enjoyed flying. I was actually able to 'empty' before I got on the plane. I know these are probably trivial things to any 'normal' person but it brings tears to my eyes that my body is finally functioning the way it was meant to be. So to those of you newbies out there...there are so many perks to this surgery...the best is getting back to a life that is normal.

Jillibean and Savanared, I also noticed some of my fibromyalgia symptoms have subsided post surgery. I can't believe that I have had only one migraine and one bladder infection in 9 weeks!!! And they were both in the two week postop period. And that for the first time in 5 years, I'm not taking daily doses of Vicodin to deal with the pain. I found that postop that I could no longer tolerate the Vicodin as it made me extremely nauseated (which is a normal side effect for 'normal' people) I just love that word NORMAL. I am hoping and praying like both of you that this is here to stay. I am sore in my abdomen from surgery but it is such a different type of pain than having that throbbing, jolting, all over achey feeling. So I'm definitely in the pool of thought that the fibro was caused by our overly toxic colons.

I hope everyone is having a great day (the sun is shining here in Oregon so it is wonderful!).

gogently