Bette quality of life after surgery?

Good luck to you both. It's exciting to kick UC to the curb. I think it's important to be aware of both sides of the coin, like NCOT said. I was well aware that there were no guarantees and I was very scared, but I have been so much better off. If you're young and otherwise healthy, you have a long life to live, living it with the limitations of UC was very stressful for me.

GC, you sound like me - but unlike me you're making the decision based on realistic facts. Against my better judgement, I was a dreamer and I went down the road of trying everything and anything, and losing a lot of years. The other side of the coin is that, I might have been a responder who got 100% remission for the rest of my life. I am confident that I wasn't that person because I tried everything. Even if I hadn't tried everything, I am seeing that this is better than that. I'd rather use the toilet a few more times and be free of dependence on drugs, doctors and insurance. That would have been a very expensive lifestyle, with a lot of pain and unpredictability.

NiceCupOfTea: you know, I hadn't thought of it that way. I think when you explain it that way it makes more sense.

I'm a few days out of surgery and it went well! I've listened to all the instructions and advice of my team. I am in pain from the actual surgery, but I feel well. For the first time since I can remember, I don't feel sick from my UC. I can't explain it. It's the most surreal feeling. I know I'll be sore for awhile.. and I can tell that. But, I feel better dealing with this than when I went into surgery! It's amazing!

Imadcock im glad you are doing well.

I had a similar feeling as you right after surgery, even with the pain from surgery I already felt better. It was like my body finally could stop fighting and was calm with relief.

I hope you continue to have a great recovery!!

Imad, I hope you continue to feel better as each day goes by.

Are steroids routinely administered by IV after surgery? Why would steroids be given after surgery when they actually impair wound healing? Avoiding steroids is one of the main reasons I've elected for surgery .....

How long does the nausea usually last?

Post Edited (GC4249) : 6/18/2016 9:17:54 PM (GMT-6)

lmadcock, congratulations on being UC free. I hope you're able to rest and recover quickly. I noticed sleep was the most important aspect in healing :)

I had very little nausea with my surgery. They started zofran as part of pre-op meds and I never had an issue or really noticed nausea post-op.

My last surgery they put a scopolamine patch on me before surgery to further help with nausea and I wish they hadn't. I took it off when I woke up. It made me loopy and bothered my vision which blurry vision is a common side effect. If you aren't easily nauseated or don't usually have issues from anesthesia I would have only IV zofran and skip the patch.

I only had zofran for my first 2 surgeries and did fine.

The main issue here is that there are no good studies done on post-surgery quality of life. All you can find are a few small studies that asked older colostomy patients to answer vague QoL questions. There were no metrics on how often ostomy reduces income, leads to divorce, causes health issues by inducing nutrition deficiencies, etc.

Everything in life is a bell-curve. [The Central Limit theorem tells us that any sufficiently large collection of random variables with well-defined limits / variances will converge to a normal distribution.] Point is, life is a bell-curve. But many people make the mistake of basing decisions on isolated, misleading anecdotes.

Example: Shaz played Russian roulette (got an ostomy) and is now ok.
Conclusion: Russian roulette (ostomy) is safe.

Just because someone ended up on the right end of the bell-curve with good results, doesn't mean the curve is at all favorable. For all we know 90% of stomas cause QoL to plummet. Maybe only 50%. We just don't know.

GC,

All the best with your surgery. My first surgery (sub-total colectomy with end-ileo) completely transformed my life, and thankfully I had a very straightforward recovery. I had my ileo for three very happy months, where I got to pick up all the things in life that had been passing me by while my UC was out of control. I have small kids too - getting to take them to the park or the beach again was just wonderful, as is having normal energy levels to parent them again, and also to support my wife in parenting.

I'm three weeks out from my second op (removal of ileo, j-pouch creation and connection) and so far, everything is going really well. I'm very happy with my outcome so far - I have full control over the j-pouch, my BMs are getting quite regular and predictable, and physically I feel surprisingly normal.

It is so good to be UC-free, not to have to think constantly about where the nearest toilet is and how quickly I might be able to run there (hoping no-one else is in it!), not to have to wonder whether I might be in remission or ill next week or next month or next year, not to have to take meds and wonder what kind of side-effects I might experience, etc.

I wasn't on prednisolone, and hadn't been for a good while, when I had my first surgery - I think that helped a lot with being able to come through it well and recover quickly. I was on infliximab (which shouldn't affect wound healing like prednisolone does, and you don't have to taper off infliximab), but my surgery was six weeks after my final infusion. I don't think it affected my outcome negatively.

Hoping your surgery makes a great and positive difference in your life,

Albannach

JS why did you decide to have surgery?

Bull101 said...
JS why did you decide to have surgery?

Its a really long story but most likely acute poisoning in an overseas factory damaged my bowel control beyond repair.

My health is otherwise good.

cupcakespinkgal said...
I belong to a support group that is 40 plus people.

Sure, but consider the confirmation bias. People that smell like crap all the time don't go to support groups. You think all people with ostomies smell normal, because the ones that don't are hiding in their homes. I can't go to the hardware store without people sniffing and glaring. And that's after fasting, irrigating, showering, and changing the wafer/bag. I've smelled like crap 100% of the time since I got the ostomy, and will most likely smell like this everyday until I die. I'm disgusting despite great hygeine and doctors not being able to find anything wrong with me. My skin doesn't smell. My breath doesn't smell. My ostomy does.

Its worth saying too that all I eat is one liquid meal in the evening composed of low stool odor foods (mostly fruit/veg). I also take 300mg of Chlorofresh (copper chlorophyllin) daily. Irrigate everything out the next morning. Still smell. Spent $5K trying to get indifferent docs / WOCNs to figure out why. They don't know and don't care. I'm a disgusting freak. My life is destroyed.

Post Edited (JS44) : 10/29/2016 3:00:01 PM (GMT-6)

NiceCupOfTea said...
This is nonsense.

Thank you for making ridiculous assumptions about my life based on having never met me. Your vague generalities about my ostomy are certainly more valid than my 30,000 hours of personal experience.

NiceCupOfTea said...
Stomas don't exude any smell inside a fully sealed bag.

That bag is 1mm thick. That's 39.37 mils. 39 thousands of an inch between an open bowel and a human nose that can detect hydrogen sulfide (rotten eggs) at 0.47 parts per billion. And the bag itself is 80 sq inches. That's a huge area of very thin surface. Tiny defects are statistically likely.

NiceCupOfTea said...
I once went to a stoma conference with over 200 people there - the smell should've been worse than death, but weirdly enough, despite there being hundreds of people with ostomies, I didn't smell the faintest whiff of anything the entire time.

No kidding. Do you think people who smell like crap would sit in a room with 200 other people? Only the ostomates who smell normal would ever attend something like that.

NiceCupOfTea said...
Your issue with the smell is psychological, not physical.

People sniff and glare when I go out on an empty stomach with an irrigated stoma and new wafer. When I go out with a wafer I've been wearing for a few days they cough. Before irrigation, I'd go out when there was stool in the bowel and people would gag. If I ate in public they'd probably retch. The smell is not in my head. I went to Walmart tonight to buy screws. 3 teens walked by. One of them said "dude, it smells like ass in here." Store was clean and there was no one else around. Every time there's a pressure in my bowel everyone within 50 ft touches their nose. I have to live in isolation. No friends, no family, no girls, no dentists, no haircuts, no travelling.

NiceCupOfTea said...
Also, you can work out and have a muscular physique with an ostomy.

Surgeon said the risk of abdominal hernia increases by a factor of 40. That's an extremely painful soft-ball sized bulge sticking out of your stomach that makes it difficult to even walk. Surgery almost never fixes it. It cripples and torments you every day for the rest of your life. Go ahead and risk that if you want. I know a guy who got one within a week of light weight lifting when he was 3 months out of surgery.

The hole in the abdomen and sewn-up bicycle seat area make your core way too weak to practice martial arts. The stoma makes it impossible to kick on the left side. And you can't safely take hits. There are judo / ju jitsu black belts on this forum who had to quit when they got ostomies. Years of hard work and skill down the drain.

I can't even jog without doubling over in pain. I have very little muscle left because I can barely handle one small liquid meal each day. When I eat my stomach swells up horribly and the pain is intense. I wake 6-8 times per night from the intense discomfort. From juice. Solids are far worse. Pain was so bad from solids I once did 3 irrigations in one day just for relief.

Bottom line, you know zero about my life and shouldn't make assumptions. Ostomy, like everything in life, is a bell-curve. Some ostomates become good weight lifters. Many others are crippled with hernia or prolapse. You got good results; I got terrible ones. You're on the right end of the curve; I'm on the left. There are no good QoL studies to tell us what the curve looks like.

Post Edited (JS44) : 10/29/2016 10:29:43 PM (GMT-6)

Shaz032 said...
First things first then. It sounds as though you could benefit from some more education on irrigating

I've done over 1000 irrigations with 3 different types of cones keeping the bag at 5', 6' and 7' to provide different levels of water pressure. Irrigation is very simple. You can watch several tutorials on Youtube but they don't tell you anything you didn't already figure out yourself.

Mayo Clinic said...
In the 1980s, Mayo Clinic researchers measured digestion time in 21 healthy people. Total transit time, from eating to elimination in stool, averaged 53 hours.

When you irrigate you're mostly flushing out what you ate 24-36 hours ago. If you want to flush out last night's dinner, from 12 hours ago, you have to work a lot harder. Might take 2 attempts in one day. A normal colon can comfortably store 7 lbs of waste. Maybe some ostomates can too, if they irrigate every other day. Mine can barely store anything without my stomach bulging out and intense discomfort.

Plus I smell strongly of crap in the morning. The neighbor's dog smells the stoma and barks its head off until I irrigate. And I clean/air the house daily to keep it from smelling like ostomy. Walking around with a full colon would make both issues worse.

Shaz032 said...
Ileostomy for 39 years due to UC. I had my surgery at 10 years of age.

Here again is the problem. You don't even irrigate. You've never experienced it, and don't know how simple it is, but you're telling me I'm doing it wrong.

I told you that my stoma smells bad and cripples me. You and Tea Cup are saying I'm wrong. You've never met me. You've never irrigated. You've never even had a colostomy. All you have is this insane myth that cutting out a vital internal organ is somehow a really great thing. And if somebody says its risky and can go very wrong, this somehow offends you.

I normally don't argue with girls, but you're both out of your mind. The ridiculous statements you're making are why I got the stupid thing in the first place. You people force absurd lies down other people's throats, they suffer from bad results, and then you insist they're just being negative. Stop ruining lives.

NiceCupOfTea said...
You've absolutely convinced yourself that you smell, to the point that you 'see' confirmation of it everywhere, even in a barking dog - what can I say to that? You have to be the one to see it's a psychological issue, I can't make you see it.

I asked a WOCN if she smelled the ostomy. She said yes but don't worry about it, because she was a professional.

They insisted I eat something in hospital after surgery. I had a cup of vegetable soup. Afterwards the whole room smelled like crap. Both nurses that came in covered their noses for several seconds.

People always react to how I smell. They commented on it last night. They touch their noses and some glare. I can smell it. And that's with an irrigated bowel. Its 10x worse before irrigation.

I'm not crazy. This thread is hopeless.