Why would u decide to have surgery and would u avoid heavy duty meds and have surgery instead??

3timechamp said...
Bleeding phases me,and the increase in cancer,and the immunity issue.1905 I'm 58yo-6'5-240 lbs male,don't need my hand held.Have had emergency spleen removed[bad internal bleeding].My feeling is lets do it.Knock me out and get rid of this diseased thing that can make my life miserable.No pain No gain.Nice the rectum bleeding can't be good,plus 2 Drs think surgery is good idea like i do.Ive had UC more then half my life,time to remove the UC

By all means go ahead and do it.

I just get irritated when people act like removing your colon is nothing and you can just bosh the UC on the head that way. Yeah, for a lot of people that's true, but there's still side-effects to any major surgery. I can't say I regret my surgery because for me it was pretty much a necessity - only steroids enabled me to put it off for as long as I did, and that's deffo not healthy.

That all told, I think you are probably right to have surgery if you can't get off the steroid enemas (I'm assuming mesalazine ones don't work?)

You sound like you've made up your mind.

I had the surgery a couple months ago and there's definitely growing pains and it's not all roses, but for me it needed to be done.

It's a personal choice, if you feel at peace with your decision, roll it.

NiceCupOfTea said...
being able to eat whatever I want without discomfort, pain, or bile acid diarrhoea.

NCOT,

There might be a pancreatic enzyme supplement that can help with the bile acid issue, I forget the name of it but I think it started with a Q. Some j-pouchers take it to help with the bile output. I wish that I could remember the name of it. MY GI's PA offered it to me once after I got reconnect but I didn't need it.

3TC,

Since you are a contractor I would suggest that you talk to Michelassi about when you could go back to work and how much time that you'll miss.

You'll be limited in the amount of weight that you can lift for a few months.

3timechamp said...
Jane u sound little fearful of surgery.Most i have talked with wished they had done it sooner.Don't spread your fears onto others-not healthy

I am not spreading any fears about surgery. You asked for opinions in your post and you got many of them and should do what is right for you--no judgment on my end. Yes--many people feel that they wished they had done it, but they add the caveat that it was a last resort and did not feel they had any decent options. So it's not quite the case that they wished to have done it. Similar to what bull and nice cup of tea are communicating.

Since you feel that you don't have any other reasonable options right now, then it's a good fit and makes sense in your situation. 30 something years is a long time to suffer with UC so I wish you the best of luck.

Totes -Rowasa works but not as well as cortenemas.Had colonoscopy in june,nothing since.I am a contractor in N.Y and if i don't work i don't get paid,with 2 kids in college,a house with a mortage,cars with payment and cost living in NY i need to work.Looking at January to have surgery.Rectum issue might move surgery up if it stays inflamed

Questran is the name of the drug for acid, NCOT.

I had surgery 16 years ago for UC; best health decision of my life. I had it done prior to Remicade/Humira, etc. being available; 6MP was the last drug of choice then. I am glad I never had to make the decision to take the heavier drugs, I know I would have.

I am healthy, physically active, take no medication and live life to the fullest each day.

Sue

suebear said...
Questran is the name of the drug for acid, NCOT.

That's the one! Thanks Suebear, I knew that someone would come along and save me.

Yeah, I know. That's the worst. Hopefully soon, there is some magical solution for you, maybe not now, but someday in the near future. I hope so. I wonder why you have pain and unpredictability. Did you ever get the results of that pill cam you did? Was there anything going on further up? I get the butt burn too sometimes. I use creams and powders. I try to remember to apply before bed so it stays managed, but yeah, it's not the best using cream or powder. It's a trade off that's been acceptable for me. if I had pain, unpredictability and meds, I wouldn't be very happy with surgery. I try to always give a realistic perspective when I talk about surgery. I don't want to lead people to believe it's a life of hard poops and eating hot wings without repercussion.

I am a 57 year old female. My diagnoses started out as UC. Now it is severe fistulizing Crohns. I had a colostomy 09-2016 because of an obstruction. I have been on Remicade since 2015. Remicade saved my life...literally..but I did develop that soft tissue stricture. I also caught a common chest cold beginning of January that I am just now getting rid of. ( and it was bad..could not breath) so I completely understand not wanting to take Remicade.

The colostomy has improved my quality of life..... I still go alot so have to empty my bag more than most people...and even with all my issues I can tell you I would do it again.. They have stated they may be able to reconnect me when we get my fistulas healed.....but I don't think I am going to. Living with a bag is what you make it. Its not always good but its not always bad.

Once you hit upper 50s.....every year there after....surgery gets harder to recover from. If I knew I was going to have to have surgery I think I would do it sooner rather than later. Just my opinion.

Best of luck to you,
Clo

@nssg:

Nah, I haven't got the results of the pill cam yet but I'm pretty sure they're back now. The IBD nurse told me a couple of weeks ago my results were next in line to be read. However I have an appointment with my GI on the 6th April so I'll wait until I see him.

As for butt burn/itching/haemorrhoids, quincy recommended a steroid cream to me (the bloody name has already passed out of my mind, even though it was only a couple of days ago). It's prescription only though, and it's stupidly hard getting an appointment with my GP. I've been trying to get an appointment with her but with no luck - I'll probably have to see any GP at this rate.

@clo124:

I think that's a wise attitude to be honest. If I knew what I know now, I don't think I'd have had my stoma reversed to be honest. And this board, and the Ostomy board, knows how much I hated my stoma god only knows. But if I look back now, I can see I was the healthiest with a stoma. I wasn't on any meds (apart from levothyroxine), I was actually in remission, and my stoma was generally much more predictable and easier to manage than my rectum.

There were some drawbacks. Despite the lack of Crohns, I still had some abdominal issues. Food can get stuck or trapped behind the stoma and that can cause pressure and pain. That said, I could eat more fibre (veggies and stuff) without issue than I can now. But the most obvious drawback is the stoma itself: it can make embarrassing noises, bags can leak, peristomal skin get itchy and irritated, even macerated. Plus depending on medical bureaucracy to supply bags, etc. in good time is anxiety-inducing. I was pretty lucky with my last GP surgery from that point of view; not sure I entirely trust my current surgery to organise a piss-up in a brewery tbh.

I have given serious thought to returning to a permanent stoma, especially as I have a surgeon who would be happy to do it. I just have this horrible feeling that I wouldn't be as lucky a second time. As long as I can get by as I am I keep on putting it off.

That reminds me: I talked to my surgeon recently about the TIES implant (go to ostomycure.com if you want to know what I'm talking about, folks) and she was utterly unenthusiastic about it. Said categorically she wouldn't give any Crohn's patients an artificial implant in their bowel. So yeah, that rather boshed my dream of getting the TIES implant on the head.

TL;DR version: I'd have stayed with the stoma if I knew what I know now.

3TC,

Just a word of caution....get the insurance and plan to be out for at least 6 weeks.

My spouse and I buildt houses. We did some of the work ourselves, some we subbed out. There was no way I could have gone back even at 12 weeks. Maybe it is different for females vs. male on recovery. (I also had complications)

The first 8 weeks kicked my hinney but I had an open colostomy. I had exploratory surgery at 20...they opened me up like circle cut in fourths. This surgery was harder than that one.... I think I am getting wimpy in my old age...

Let us know how it goes...

Clo

Driving is as soon as you get off of the Pain Meds. The issue for me was the first few weeks was the exhaustion but I was in much worse shape that you will be in for your surgery. I basically crawled into the hospital because I was so sick.

I too needed an open surgery, much more invasive.

Getting around will be fine, as long as you take it slow.