Life After Colectomy/Colon Resection Surgery

[Gorsundar]

Hello,

Could anyone please share about their experience with a colon resection surgery? Changes in urgency or incontinence or pain? What about eating? Can you eat seeds or nutshell, etc.? How long to heal?

Thanks.

[Hidden]

Hello G,These are important questions you are asking. And my heart goes out to you in this time.

I think it is wise to get as much information as you can so you are at peace before undertaking this major surgery. And it is a major surgery.

I did have this Colon resection surgery as I had Colon Cancer stage 3, and I got about 3 second opinions before settling on a World Class renowned Colorectal Cancer surgeon. I couldn't have made a better choice. I planned for this months ahead of time.

Stocked up on the supplies and foods that I would be able to eat afterwards because I could not lift anything after surgery.

I Spent tons of time finding just the right carers for my beloved dog-so that HE would also make it through this with me. And he did! Yay! That was actually my biggest fear.

Luckily God was truly watching over me and my dog too, and this Amazing Surgeon!!!- assembled the Best Surgical Care Team. He thought of everything. He really did! I will always owe him a debt I cannot repay.

Though I don't see him anymore due to his staff really hating me (not sure why but it has not been resolved-really hurts me😭), I will ALWAYS be forever Grateful to him💖💖💖💖💖💖💖💖💖💖💖💖💖💖💖💖💖💖.

Anyway- so I had an Amazing Surgeon who took great care with my body. Inside and out.

I had minimal scaring that today is practically gone! He chose to enter the main colon through my belly button and it was genius because there is just a tiny little scar. Another Dr. who also is world renowned had shown me a sketch of my scars and the positioning didnt feel right to me. So if you CAN ask ahead of time for your surgeon to show YOU exactly where he plans to enter and what scarring you should expect.

I did not need a bag. Praise God!!!! Again, I owe that to this Surgeons Expertise.

The first night of recovery I can describe as like being on a giant ship in the middle of a giant storm. I was literally tossed all about and a lot of vomitting and the brave nurses holding me with pillows against the wound so it wouldn't come open. Me grasping the Tall IV Tower for balance as I heaved and heaved! Oh Lord it was truly AWFUL!!! But EVERYBODY was SO Wonderful and Good to me! You will be humbled and Amazed at the huge amounts of Compassion and Love these Nurses have for you. I Promise! I was blessed with positive motivated Nurses who came in constantly checking on me and best of all Walking the Hall with me. THAT will heal you quickly -- is the Walking-as much as possible. It takes a lot of strength but if you are Determined to make it! I Believe you WILL MAKE IT!

Also, Good Home Health Care is a Necessity. I would buy incontinence underwear if I were you. Enough for a month. You most likely won't need it but you never know. I was up and walking in my apartment every day. Then out walking my dog. Then just a LOT!!!-OF WALKING! And for me it felt Glorious! Just to be able to get up and Walk Again! Yay!

Anyway, I spent all year walking-working out-taking Excellent care of myself...and that darn Cancer came back anyway!!! Ugh! Anyway, I ain't Goin Down!!! Not without one helluva FIGHT! So I am determined to beat this Cancer! You just have to tell yourself-what is the alternative? Losing? No. Losing is not an Option!

Diet wise what I have given up since Post Op:

No Raisins. No big Hard Seeds. ALL GREASY SPICY FOODS. Hardly anything with preservatives or dangerous ingredients.

NO Candy! Although I do eat some milk chocolate. No Hard shell Tacos. ALL CHIPS. Anything that might be hard for my stomach to digest I don't even...

Seeds that ARE Good to eat for Omega3's: Chia Seeds, Hemp Seeds, another small Seed I eat regularly but I forget what it's called. I can eat Walnuts. Rarely Pecans have to chew and chew until it's like paste. No Dairy products. Nothing gassy. Hardly any beans. Almost no lettuce bc it hurts my stomach very badly.

I eat a diet mostly of Grains, small seeds...like a bird 🐦 and I do eat Chicken. Steak is hard on me so almost never. No lunch meats. Avocados are good. Blackberries, Blueberries, Fruits are excellent, Green beans, Carrots, cooked celery, Pickles are great for your gut. No Tomato! Soups are great too!!!

After your surgery you may try something like Metamucil. People swear by it. I can't bc I am allergic to psyllium. You can experiment with yr favorite foods and see what works for

Y O U!

The Best Advice is to eat small meals.

Eat slowly. Chew everything until it is like gruel or paste and then swallow. Do not swallow whole pieces of food bc yr stomach cannot take it.

Overall if yr Cancer doesn't return you could be feeling fabulous forever after that surgery.

You will get back to your regular old self. It will take a month or so but once you do you will feel so much Better! Yay!

Be super careful not to get yr wounds wet too soon or infected. Stay clean. Wash yr hands ALWAYS!!! You should be just fine.

I know, Believe ME I TOTALLY KNOW just how freaking Scary this Surgery is. It is terrifying!!! But if someone like me who has Severe Anxiety Disorder plus PTSD can Survive it--

-I Believe you WILL Too!

Plan ahead for everything. As King Richard-Serena Williams Dad Always says, "if you fail to Plan you can plan on failing!", or something like that.

Wishing you all the Best 💐🙏💪💖 Brave Onward!

[Hidden in reply to Hidden]

Plus, I forgot the thing no one tells you is you will be sleeping on yr back for A VERY LONG LONG TIME. I wish I had known so I could prepare bc I am a side sleeper. It took months for me to get back to sleeping on my side. Invest in really great pillows! If you can get all yr laundry done plus extra extra sheets and bedding done beforehand that is one less giant thing to worry about. Jusy remember post surgery: No lifting of anything more than a couple pounds...for at least 2-3 Weeks or longer. If you can get support and someone to come in and help you that is Best.Thinking of you and wishing you Strength, Bravery and Good Drs. To Take Excellent Care of You ~

[Gorsundar in reply to Hidden]

Hello. Thank you for your reply. What type of surgery did you have... left or right hemicolectomy or... ? What country are you in? I am in Canada. I have met with several surgeons. Not at peace. They did not tell me any of what you shared. They all said I won't notice anything after surgery. No need to change diet or anything. I couldn't believe them. How is your general digestion? What about urgency frequency or warning before needing to go to the toilet?

[Hidden in reply to Gorsundar]

I am very sorry to hear about this! You definitely need to have trust in your surgeon as he or she has a huge job in front of them. You are a Team Member with that Surgeon. If you can do it--I would keep looking until you DO find that person. That is exactly what I did. I kept looking and looking. The first five minutes after merting the Surgeon who helped me I just knew; almost instantaneously. He is Gentle, Kind and really listenened to me. He didn't have a huge ego. He is just an Amazing person and I Trusted him.I had a left tumor removal by laparoscopic surgery. Healed up in no time.

That said-the Cancer was found in a lot of lymph nodes so it wasn't all great news.

I am really sorry, I know nothing about Lynch syndrome. Not sure if you should have the colectomy or not. That sounds like a major life change to me.

Can you contact some major Cancer research Hospitals like:

Sloan Kettering in NYC?

M.D. Anderson in Texas

or Mayo Clinic in Rochester, Minnesota and ask them to give you a second opinion?

Sloan Kettering, M.D. Anderson, and Mayo Clinic are the Best Cancer Clinics in the World. Thinking of you and Sending you my Prayers for you to meet and find a Surgeon you are able to Trust and get Excellent Care. 🙏💪💐💖

[Gorsundar in reply to Hidden]

I am in Canada on our government paid health insurance. I will see if I can talk to another surgeon.

[Gorsundar in reply to Hidden]

Where was your tumour and how big was it?

[Hidden in reply to Gorsundar]

on my left side. It was Cancer.

[Txbj1 in reply to Hidden]

did you have chemo after surgery?

[Hidden in reply to Txbj1]

No. It was highly recommended. I wasn't strong enough after all of that surgery.

I had many very difficult and physically trying surgical procedures all before the colon resection surgery and had lost 40 lbs. could NOT Eat Anything, and I was very weak overall. I almost died in January '22 from a procedure gone wrong. I did not think I had the strength for any more procedures. I focused on getting my strength back and working out and staying healthy.

I did try to get chemo in October that year; however, ALL the scans including foundation/blood work/CT showed nothing and that Oncologist told me "it won't make any difference"-and he did not recommend any chemo at all-then suddenly it had metastacized by 1 month later in November. It was clearly a mistake for me not to immediately do the chemo.

Again, I didn't have the wherewithall at that time. Now though, I have my Port in and am going to do chemo with a take home pump and have an excellent Oncology Team whom I trust. I know my Oncologist wants me to Survive. I needed that kind of Care and Trust and it wasn't there for me last May.Situations change. I can only do what I feel capable of, and I do push myself to do more, still there is a threshold to things as I am Disabled and have many complications.

I am So Thankful to have the chance to still get chemo and am Hoping and Praying for a good outcome. If it's recommended -people really should do it.

[Txbj1 in reply to Hidden]

bless your ❤️. I will be praying for you. 🙏🏾🙏🏾

1 more for me then scans in 3 months. I won’t miss it. I am on folfox and take home a pump. A couple of times I got up and forgot it was connected and I soon remembered after the jerk. 😂. Stay strong. Hugs

[Hidden in reply to Txbj1]

Oh, Thank You! Especially for the Prayers. So glad you are nearly done. That's got to feel good. I will try to remember that it's always connected. Yikes! Happy Days to you 💐🙏💖🏖🌊🌺 ~

[Gorsundar in reply to Hidden]

Thank you. So, do you feel your colon functions properly now? No accidents or anything like that? How long to heal and how often for colonoscopies?

[Hidden in reply to Gorsundar]

of course. You are so Welcome 🌟👸💐I absolutely feel my colon works properly for me now. And it got going in the hospital too 1st I had some rumbling in my stomach. Drs said that's really good! Then some burps and passing gas! Annoying and embarrassing! Still Good though! And then I did begin to pass some stool. Slowly but surely! And ALL BLAND FOODS!!!

Not 1 accident. Not ever.

I am happy to report. I never even needed those special underwear. I bought like 10 huge boxes and I ended up just wearing them for safety sake. Hallelujah!

Never even needed them. Yay! I just look like I'm wearing granny panties 😂.

I do again blame much of my Success on this Amazing Surgeon and his Team of Surgeons and Anesthesiologists he picked them ALL.

He clearly is like the Best Surgeon in the World, in my opinion.

I would give you his name but then you would know exactly where I am and unfortunately I do have to protect my Privacy.

But I have No doubt you CAN and WILL also find an Excellent surgeon just like him if you keep looking. These highly specialized Surgeons are like a HUGE Gift from God to help all of us Stay Alive! They are Dedicated and SO Trenched in to what they DO!

SAVING PEOPLES LIVES!

IT IS WHAT THEY DO

IT IS WHO THEY ARE

God Bless them ALL 🙏💖🙏💖🙏💖🙏

Trust them back and they will help you too!

However, I do have to deal with some minor constipation and that's not great. But you know it's easy to deal with. Like I said, my Diet now is so different. I am trying to eat high fiber foods that are gentle on my stomach. Because a bunch of pinto beans...no way! Have to watch the gassy foods. No more ice cream. And I love ice cream. Like, used to eat ice cream every single day for years and years!!!! Practically for 50 years now! So only lactose free for me. Ugh!

So if you are willing to make the necessary changes to protect the lining of yr colon & stomach. Do the walking! Tons of walking! Take Good Care of yourself. I have never been a smoker, drinker or done drugs.

Honestly, if you can just treat your body like you really really LOVE your Body and you are hellbent and determined to stick it out and By God you WILL!!!- Make it through this! Then I Believe you will! 💪🙏💖 Stay Strong G! Keeping you in my Prayers for you to find the right Dr. to help you. Praying for you to have the Courage to do what needs to be done. Praying for the Holy Spirit to reach out to you and surround you with a strength and a FAITH in His Healing. You can let go your clenched grasp just a little and give yourself up to the Holy Father and ASK Him to guide you ASK for HIS helping hand to pick you up and carry you. HE will do it too! Have FAITH G! 💪💖🌟👸 Brave Onward!

The walks I took ALL THIS YEAR AFTER MY SURGERY--Were the Best most Amazing walks ever! Almost better than all my years of long distance running and rollerblading. Almost. You will get back to who you were BEFORE you got sick.

Just think...you will feel BETTER!

[Txbj1]

hi Gorsundar . For me after surgery I was told to stay on bland foods until my system starts working again. I made the mistake of drinking a homemade green smoothie and a salad and paid for it. I had pain in the surgical area and it was hard getting in and out of bed for a couple of days until I got my system down. My surgical wound healed nicely. I stayed on bland foods for about 2 weeks. And gradually worked myself up to the good stuff. I took about a month to see ‘normal’ looking stool. No lifting heavy items. I am on my last chemo treatment at the end of the month…what a journey . 🙏🏾🙏🏾 the best for you!!

[Hidden in reply to Txbj1]

Really happy you are doing well. Yay! You did it 💐🙏💪. Stay Strong!

[Hidden in reply to Txbj1]

I also cannot eat any lettuce or salad. Yikes! I have felt like my colon was going to literally break open the last time I simply ate some romaine lettuce. I don't think I will ever eat lettuce ever again. I can however put some organic cilantro into a chicken noodle soup and just a few leaves well cooked are alright.

[Txbj1 in reply to Hidden]

I love salads, I was bummed when I had to take a break right after surgery. There's alot of green smoothies that you can buy now to help get the nutrients that you need. I heard Cilantro was good for health.

[Hidden in reply to Txbj1]

Oh Gosh Me Too! I used to eat salads every day. I love a Southwestern BIG Chicken Salad with Ranch sauce and tortilla strips from Applebee's. The BEST! I am sad about the Salads!! But darnit! They ruin me.Yes, the Cilantro is good for you. I make sure to cook it tho bc it is a leafy green. Not taking any chances. I do eat avocado sauce on toast and it's pretty good for an alternative. On my weakest days I have to splurge like on St. Pattys Day I had a Reuben sandwich and St. Pattys Day Shamrock Shake from Culver's....and lived to tell 😂

Anyway, home with my chemo pump today. I did 4 hrs of chemo yesterday then this pump is literally attached to me...too bad it's not a Pot of Gold..ah well, it's keeping me alive so no complaints! and I walked my doggie this a.m. 🐶 and we both did pretty good! It's hot and humid but he's a little trooper!

Hope you are Well TX and Hoping you also Have a Super Day 🌟👸💐🙏💪💖 ~ Brave Onward!

[Txbj1 in reply to Hidden]

I need to try avocado on toast yum! Thanks for the tip. Cheers to you. Enjoy your day.

[Gorsundar]

Hi Txjb1. Thanks for your reply. What country are you in? Which surgery did you have? Where was your tumour and how big was it?

[Txbj1 in reply to Gorsundar]

I’m in the US in Nevada. The tumor was located in my sigmoid colon it was 3.5 x 2.5 cm causing partial bowel obstruction. After scans and bloodwork, surgery was scheduled on Friday LAR and I was home Sunday by 1pm. My surgery was 3.5 hrs. Went really well. No x complications afterwards

[GCCA-Survivor Administrator]

Hi Gorsundar,

I had a partial colectomy in 2012. They took my entire ascending and half of my traverse colon. I spent eight days in the hospital and lost 44 lbs. At first, I had to eat a lot of soft foods. Jello, pudding, we’re probably the main foods. Then after four days of that, I moved on to some pasta, applesauce, mashed potato type foods. Things that were more substantial. They want you to do a lot of walking to help heal this procedure. The more walking you do the better off you will be. Bottom line, to get out of the hospital they say you need to be processing well to go home. You need to be peeing and pooping to go home. I eat a lot of pasta anyway. So, it wasn’t a big deal or a transition to get back to normal foods. I gave it about a month before I went back to eating seeds and nuts. Other than that, I went back to eating my normal diet.

You do have to be careful and let yourself heal. You need to walk a lot. You need to be careful about strenuous things that may cause a hernia. Just give yourself time to heal and you’ll be far better off than trying to do things before you are able to.

All the best ... Tom

[Gorsundar in reply to GCCA-Survivor]

Hi Tom. Thanks. Was it open or laparoscopic? The minimum surgery for me is left hemicolectomy for a tumour in the descending colon. However, due to the Lynch Syndrome they say textbook recommendation is to remove the entire colon. I don't trust the surgeon to do the minimum since this is a very strong recommendation. Was total colectomy recommended for you? Why did you not choose total colectomy? How often do you go for colonoscopies or other Lynch screenings? I have MSH6 identified.

[GCCA-Survivor Administrator in reply to Gorsundar]

Open surgery. And I did not have genetic testing until after my surgery and right before I was to start chemo. I am also Lynch MSI-h w/ MLH-1 issues. The tumor was large and they moved quickly. I have never heard of removing the entire colon for Lynch. I do see it is an option. I do not know what life would be like with that procedure. Maybe it reduces the amount of surveillance you'd require? Either way, I would get a 2nd opinion about that. I know a lot of lynch patients and I have not heard them mention that. The question is it the best thing to be doing? What's the quality of life aspect having that done? Is it to save on surveillance procedures?

I receive an annual colonoscopy, annual CT scan, annual full blood count, annual cytology, and an endoscopy every 3 years.

[Gorsundar in reply to GCCA-Survivor]

Hi Tom. The "textbook" recommendation I was told is a total colectomy and for Lynch women over 40 a radical hysterectomy.

[GCCA-Survivor Administrator in reply to Gorsundar]

Total colectomy ... would that mean stoma & urostomy?

[Gorsundar in reply to GCCA-Survivor]

Have you had any polyps or any other recurrence?

[GCCA-Survivor Administrator in reply to Gorsundar]

A few polyps, but no recurrence. They were removed.

I am hearing that a total colectomy is a viable option, but I have no idea what it would be like as far as quality of life issues down the road. I'll ask another group for some input on what they hear. We have a lot of lynch people.

Check out this site and see if you can find more input:

aliveandkickn.org/

[Hidden]

So now going back to yr 1st post here. It suddenly seems I am now in the same boat. I will do it if it gives me better time while I am here. Unless it's lessthan 6 months. Does it buy me more time? Yes? Then yes. I will do it. Colon resection IS hard. It is a serious surgery but people recover. People life for a long time with colostomy bags too.Lets you and me be both G

Stay Strong willed & Hopeful and looking towards Better Days with less pain. I am still trying to holdfast!