Is there a "colectomy" section? I'm 5 weeks post op. I have questions.

Hi, I had a redundant colon. Plus, after the "function" test, it showed the markers all stuck at descending colon unable to come out.

Plus partial "lazy rectom" after defecogram results but my surgeon and I, decided to try colectomy without bag first. I have some issues after surgery re: rectom but surgeon and I feel what I am doing is fine if I don't want a bag. I'll explain letter.

They had to take out 7 ft. When a normal colon is about 4 ft. My surgeon said "we don't know if you were born with it longer or if it grew."

Until I heard that I had NO idea colons continued to grow. He said "As well, from pushing so hard for so long, it can stretch as well and you lose muscle grip motion eventually as it stretches out."

It took 3.5 years to get the attention of a "top surgeon". I was ignored and sent home from other practioners in hospitals, doctor's offices, unable to have a bm. The idiots always assigned "behaviour" problems. So pedestrian in thinking. When I said "it's function, let's do function tests please," I've never seen so many adults get angry from a patient telling them how to help you.

They didn't believe, I had a life to get back to. I'm not impressed with doctors or mainstream. They are really, insulting at best. Few are highly intelligent.

I wanted to get back to fitness, business, and all docs acted like I was embellishing my lifestyle. I never saw docs before I got sick, so I didn't have a GP. I had no GP to go, "she is a high level functioning sane adult, this is a legitimate problem. I know this girl."

This was making my life impossible living in bathroom, sick from high dose laxatives and strapping a garbage bag to my bottom and waist and halfway laying on couch on back, legs stretched and bent to floor, bottom hanging between couch and floor, to take hours to evacuate. My "rope" felt floppy and it was the only way it would slow trickle out into the garbage bag taped to me. No one, not one doc, believed, this had become my life. I had to literally find a position so the "intestine" rope would open to allow evacuation. Even after taking 150 mg of bisacodyl laxatives and 1800 - 3000 mg powdered mag citrate daily.

It all made me so sick.

I couldn't evacuate on toilet as it bent something and stopped flow, so it was long hours of laying in a certain position to evacuate. Gosh, so disgusting and I was so so sick and skinny from eventually stopping food off/on due to not wanting to go through the evac process.

I googled, found the man (surgeon, corectol proctologist) I wanted to meet and wrote an impact letter. His background after I researched was top top and I knew I needed him. His secretary got my email and said "Get a referral from any GP and yes, he wants to see you ASAP." After I went to walk-in clinic, got a referral sent to him, he and I met quickly as that initial appt was fast tracked. During first meeting he said, "For all tests here on in, we are fast tracking you." I was SHOCKED. FINALLY someone heard me. He was SO respectful and believed my background.

He thought I would probably need surgery as I suspected but let me know, with me so sick and skinny, he couldn't do it. So he told me, I had to work on eating more which I did, and I upped all vitamins. I was not in good shape when I was admitted but better then our first visit.

He kept his word.

He fast tracked me as he promised. He believed me after reading my letter and actually thanked me for it. He got me through system and helped me in 6 months when it would have taken 2- 3 years. I'm in Canada. So, I'm grateful. He wanted me back in life in my fitness, running and cardio, traveling, building my business. His bedside manner was impeccable.

So, I'm 5 weeks post op. All large colon removed, small intestine attached to rectum. Even my sigmoid was redundant so it's all gone as well.

My rectum is still somewhat lazy but I maneuver with a gloved finger manually for full evacuation, plus I have to lean way forward on toilet for it to come down "intestine tube" at the end, and he said at last weeks appt, "if you're fine with this then it's fine."

The reason we went in knowing I still may have rectum problems was I was desparate not to have a stoma. My fitness, all of it, like those that have them, it's all affected in an extreme way. A persons life. I say this with EXTREME compassion for those of you that have them. So he did what he could to see if we could avoid it.

I'm fine with manual movement of rectom to void the last part of bm. It's about 75% of the time. Maybe it will change as I heal. Meantime, gloves in purse, pockets etc when I'm finally able to get around. Right now I still can't due to pain and sick.

GAS that hurts like he#* at abdomen is a huge problem. Lot's of pain. If it comes down I can get it out. BUT it likes to stay stuck in an area too high to come down and razor blades and ferments, that can and does go from hours. Haven't figured this part out yet.

The area gas gets stuck is the same area he showed me he attached small intestine to rectum. He put his hand on abdomen and said "just through here is where I attached small intestine."

Ironically, that is the exact area that gas gets stuck and feces depending on consistency. If I have liquid it can go through but that is not healthy to always have liquid bm's. AND the fermenting stops with feces out. It's only in feces that it ferments.

I had NO idea some things would be so troublesome with pain post-op. Stool is water. 6-8 a day.

Catch22, watery stool carries gas out so I eat for water stool. Sludgy stool does not. BUT sludgy stool stays in longer therefore I feel stronger and get more nutrients. BUT that comes with a price, PAIN from the gas and fermentation.

Hemorroid problem so washing anus, and seem to be getting the burning under control as well as using vaseline etc., finding my way around, but gas is the worst. IBS razor blading pain can be excrutiating. Especially when it doesn't want to come out.

I'm weak, sick, so upped my homemade electrolytes of mag citrate, low mg so it doesn't act as a osmosis laxative, potassium chloride, calcium carbonate, vit c. All my supps are no GMO, no dairy, no sugar, no yeasts, no soy and powder and I mix in soup. Seems to be upping my strength. I feel it right now.

And I juice green drinks in my machine, so no pulp. Can't do fiber yet. My surgeon said "let's do 8 weeks of no fiber for you instead of six" which relieves me. I do cukes, celery, spinach in juicer. And put vitamins in there as well.

I came into hospital at 91 pounds. I'm 5'6" and typically a hard body of 120. Light boned and fitness girl. Man what a trip nightmare. I stopped breathing on pain meds, I kept passing out with nurse talking to me and my breathing stopped so they couldn't give me pain meds for 48 hours. Off of them after 3 weeks. They checked my breathing all night for 2 nights.

I had an open colectomy. My super surgeon tried larapascopic but the 7 ft colon wouldn't permit it. So he went in. I'm fine with it.

Am I in the right area?

QUESTION: How long for this excrutiating gas?

I was on Diflucan for bowel yeast. Long story as we all know most docs do not believe in systemic candida or bowel yeast etc, but I've a USA doc helping me with that. He's helping me with this outside of mainstream surgeon in Canada who helped get me the surgery. So I'm starting Sporanox for bowel yeast as Diflucan helps somewhat but we think I'm building resistance to it. Hoping this helps the fermentation and it's not just the surgery aftermath.

So strange, my intestine area, I feel everything inside. It feels different. I will be glad to have it heal more. It's like, it doesn't.....
work smoothly and I feel it.

Initially it felt like I had rocks in my upper gut. Like a bag of rocks inside would shift when I moved left or right laying down side to side. This stopped 3rd week and it was an awful feeling but, not painful.

THANKYOU for reading.

T xo

Post Edited (Vancouver-Girl) : 3/24/2015 6:55:21 AM (GMT-6)

Ditto what Sue suggested. You may have some scar tissue at the attachment site that needs to be broken up. A stricture would allow for gas to build up.

Being that you had trouble with your rectum functioning correctly as well, was a J pouch ever discussed as an option? With a j pouch the rectum is removed along with the colon. A section of the small intestine is brought down and formed into a j shaped reservoir which essentially becomes your new rectum then attached to the anus.

Yes it can develop that quickly. I had a stricture develop four weeks after my surgery.

You're welcome and yes I'm doing very well. You will too. It takes time to heal and adjust. Five weeks is still really new and you had a huge surgery. Hope you feel better soon. :)

ByeByeUC said...
You're welcome and yes I'm doing very well. You will too. It takes time to heal and adjust. Five weeks is still really new and you had a huge surgery. Hope you feel better soon. :)

I'm so so glad to hear that you are doing well.

THANKS for saying I will too. I'm sending you a hug. THANKYOU so much.

I...........it's hard for me to conceptualize just how huge this surgery actually is, I don't know why.

Like you have just said on both counts, my mother keeps telling me it's a big surgery and that I'm early out.

QUESTION: How long did you have to eat in such a way that you were so weak?

Or could you start to eat more substance earlier because it came out of rectum easier and by that I mean without manual manipulation?

Or perhaps due to your type of surgery it didn't come out of rectum easier and if this is the case forgive me.

I hope you don't mind these types of questions.

just a quick note from me after reading 75% of your post and some of the responses - -

I just got back from an intense workout class at the gym - wow, really kicked my butt!
I'm 9 months out from first surgery, and 4 months out from second (to make ileostomy permanent) and trying to get my muscles back from being sick for so long (bed ridden for months, lost 50lbs etc...)

Those 60 minutes of pure @$$ kicking bliss were in NO way affected by my having an ileostomy.
I would have to disagree that a stoma affects fitness in an extreme way.
Absolutely and respectfully disagree.

Actually one of the reason I chose a permanent ileostomy over trying a j-pouch (internal pouch created to hold stool in the body before evacuation) was because I wanted my life back. No more running to the bathroom, pain, debilitating cramping - - I knew I never wanted to deal with a symptoms of my disease ever again... back to life for me!! :)

Unless you are in national competitive weight lifting or extreme fitness programs (again for competition) you can still do almost ANYTHING you want fitness and health wise with a stoma!

Dilation just means they have to go in and stretch and break up the scar tissue. If it's right at the anastomosis site it can be reached digitally (gloved finger) or sometimes they use a tool if you are sedated. My surgeon took care of mine right in office digitally.

I'm not sure if they do a j pouch for lazy rectum but it sounds like an option to me. Your colon is already out so I would definitely inquire about it. Google J pouch procedure. A ton of info will come up and illustrations too. Lots to read about.

ByeByeUC said...
Dilation just means they have to go in and stretch and break up the scar tissue. If it's right at the anastomosis site it can be reached digitally (gloved finger) or sometimes they use a tool if you are sedated. My surgeon took care of mine right in office digitally.

I'm not sure if they do a j pouch for lazy rectum but it sounds like an option to me. Your colon is already out so I would definitely inquire about it. Google J pouch procedure. A ton of info will come up and illustrations too. Lots to read about.

Ahhh, okay.

I read a bit on it but it was not as explanatory so thankyou. Reached digitally. Sounds good.

I just made another appt with my surgeon today for 4 weeks down the road. I am actually "leaning" toward a stricture due to how I've gone back in certain areas and what I feel inside etc. It's plausible and adds up. I'm not a symptom mongerer so...........it's really plausible.

Yes, you're right and I did google and lots of good stuff. Very interesting.

THANKYOU so much for coming by and the explanations. I do appreciate your kindness.

All of you so far have been extremely educational and it's such a benefit to have people "been there done that". It's a blessing to have the knowledge and share it with me and others like me. xoxo

Yeah he is an amazing person as well as a doctor, really down to earth.

Anyways I'm about 8 weeks post op, I eat mostly paleo with rice, aka rice+meat+a veggies and I feel quite strong and stool is mostly formed I do find excess carbs in my opinion feed bad bacteria and in my case anything wheat related.

You said you have an issue with gas and think it could be food fermenting and bad bacteria? Well us jpouchers are pretty accustomed to that with the artificially created pouch to hold stool, most of us take a probiotic (even though we no longer have a colon) and sometimes an antibiotic.

If you're into holistic stuff I'd also recommend trying oil of oregano as its natures anti biotic for bad bugs and yeast, the heavy metal in pepto bismal is also great versus a lot of bad bacteria. I've also tried gas-x and beano with some success for gas, you can also look up "SIBO" if feel your gas is excessive and possibly bacteria related.

Post Edited (Virdent) : 3/26/2015 9:58:35 AM (GMT-6)