Surgery? Is it worth It? Quality of Life?

[beckett]

So I have been dealing with Crohns for 15 years now...been very lucky to be able to pretty much manage it with Meds...Predisone,Entocort the first 14 years. Things got progressively worse so started the Humira. Now the Doc says its time for Surgery. Two bowel obstructions in the last 6 months. It would appear I have the inflamation type of Crohns and have fianally developed enough scare tissue to warrent surgery (ileocecal resection) and continue the Humira after...no stoma required.

Assume someone out there has had some similiar experiences...Did Surgery Really make life better? Hows the Quality of life after? (excessive bowel movements?) Anyone wish they could go back and not do it?

I suppose I dont have a choice but I have heard of alot meds out there that I have not tired...

Any Advice Appreciated

Surgery Scheduled for 3-13-14oo:

 

[nogutsnoglory]

I think we can all agree surgery is a last resort but if you have scar tissue, no medication will help. Surgery is complicated, it can vastly improve your life and it has for many but others do regret it. That's why it's very important to be fully informed and have the least resection possible. I do regret some surgeries and not others.

 

[Grumbletum]

Hi Beckett. I had only been diagnosed for 2 years when I had my surgery, but it was necessary because of an intestinal fistula that wouldn't heal on meds. The difference it has made to my life is immeasureable. I still have to watch what I eat as fatty, oversweet foods have me running to the toilet, but for me that's a small price to pay.
I wish you all the best with your decision, whatever it may be.

 

[lente]

Hello Beckett,
I am in a kind of similar position as you.
My crohn's was diagnosed only a year ago, but haven't been able to eat for 3,5 months due to pain. Thursday had a colonoscopy and it turns out my complete colon is scarred so badly that it's only 60cm long instead of the normal 150cm.
Wednesday I will see a professor who will tell me which options there are, but I'm certain one of them (if not the only one) will be an operation.
I an trying to find as much information as possible about the different techniques so I can make the best possible decision for myself.

Did your Doc say there is no stoma required? For me, that would be a big relief! And do you have any idea how long you will be in the hospital after surgery?
Hope everything goes well for you, and you will be in full remission after this!

 

[three crows]

Hi Beckett. I'm having the same surgery tomorrow. Good luck!

 

[beckett]

Go in tomorrow...thank you for all the reponses...will try and update after for anyone that wants the info

 

[lente]

Good luck with your surgery! :hug:
I hope it brings you the relief you are looking for, and love to hear how it went for you.

 

[LCATC945]

Good luck. And definitely keep us updated on your progress. I have yet to have a surgery in all my years of knowing I've had it. But I've had two flares in a year and idk if I'll bounce back from this.

 

[Bart4u]

I have had Crohns Disease for 40 years now and I have had 3 resections. The answer is yes it will give you a better quality of life. Your pain will go away and you will be able to function. I am sure your doctor told you the chances of the disease coming back is high. It came back in my case but it took about ten years between surgeries. If you have had any blockages or the opening of your intestine is the size of a round pencil then it is time to have the surgery. You are going to risk the chance of having a complete blockage. That is what you do not want. A complete blockage is very dangerous and is very very painful. It will take you about three months to feel normal after surgery. If the surgeon uses a Lap procedure the healing process is faster than an open cut. It depends how much damage is inside you and if you have adhesions or fistula's. I wish you the best and I know you will feel much better. Take care

 

[beckett]

Hello all... Has been a week since Surgery..sorry for taking so long to update. Everything went according to plan took out 12 inches. Pain is incredible!! But everyone is right, the pain meds cover it more or less.

All and all a crazy experience, glad I got on this site before hand to have a better idea of what was going to happen.

If anyone is about to go in and needs that last minute pep talk let me know!!

Oh....is surgery worth it? Well its definitely different for everyone, a decision you must make for your self, and all you can do is fight back at this disease and pray....

Thanks everyone!

 

[Bart4u]

Beckett glad your surgery went well. You soon will not need any pain meds due to the operation. Please ask your GI about taking Humira six weeks after your surgery. That is the best time to take it. It will act as a preventative medicine since you have a clear intestine path. Make sure you start to take walks. Everyday take a longer walk than the day before. You will feel tired for the next few weeks so rest up and make sure to eat what you can and drink lots of your favorite liquids non alcohol that is for right now. Once you stop your pain medicine you might be able to have a glass of wine. Take care and do what I did after my last surgery and that was to start a new hobby.

 

[superzeeman]

I had a resection two years ago due to a mass of fistulas. I have never felt better. In my case I had no choice as I was pretty much blocked. I could only go with a drug called Amatiza that liquefied my stool to the point where is could come out. Anyway, good luck and give yourself plenty of time to heal.

 

[beckett]

Quick Question:::: whats does an infection look like in this type of Surgery?? Starting to think maybe bad things are happening, or just could be paranoid...

 

[Bart4u]

My first resection I had an infection. Symptoms were a high fever and I had brown stuff oozing out of my scar. I had a open cut. This was back in 76. The surgeon opened my insission and had to drain the brown stuff. It was kind of gross and the insission had to heal in an open style. I had to pack my insission with sterile dressing in a clean sterile place every day for about a month. I was then give heavely antibiotics to cure the . Are you on antibiotics now? Usually surgeons start antibiotics before an operation and keep them going for a few weeks after the operation as a pre caution step. If you have a fever or some worries please call you surgeons office now and don't wait. Please see your surgeon or GI and if they can not be reached go to the ER. Possible infections are serious and should be looked at soon especially right after a surgery.

 

[beckett]

No fever, just red and heat around the incision.... Figured as long as no fever I am good ....no antibiotics before or after

 

[Bart4u]

I never heard of having this kind of operation without antibiotics. I thought that was standard procedure because of dealing with the intestine and the bacteria that comes with it. Usually the antibiotics are giving through your IV. It looks like a small sandwich size plastic bag that hangs with the larger IV bag. Maybe you did not notice it. If you get a fever or have concerns please call your doctor. Have a restful weekend and don't forget to take your walks.

 

[dave13]

Hi Beckett,I had a resection in my upper jujunum 11-13.Thanksgiving week.I know what you are going through.It should not be red and puffy around the incision and staples.Err on the side of caution and have it checked out.

Your body is vulnerable,don't chance infection.Feel free to ask me anything.

 

[beckett]

I never heard of having this kind of operation without antibiotics. I thought that was standard procedure because of dealing with the intestine and the bacteria that comes with it. Usually the antibiotics are giving through your IV. It looks like a small sandwich size plastic bag that hangs with the larger IV bag. Maybe you did not notice it. If you get a fever or have concerns please call your doctor. Have a restful weekend and don't forget to take your walks.

Yes you are correct I did get IV antibiotics after surgery....forgot about that...