How do you know when it's time for surgery?

[Novice]

Hi, just wondering how you all decided if you decided it was time for surgery.

My crohns is pretty aggressive, most of the time I cope quite well but recently I'm in constant pain and I feel almost ready to give up trying.

I've been told so many times crohns cannot be cured by surgery, but there's always the hope you're lucky it gives you a long remission...

I just know my crohns is pretty bad I'm almost certain ill end up with a bag and being 21 I'm just not ready for that... But I'm also so depressed of living like this...

Sorry just hoping to reach out to someone who understands

 

[Grumbletum]

Hey there. I'm sorry you're going through a hard time :-( I think the time for surgery is often when medication alone is not doing the job and your GI feels that you have exhausted all other avenues. In my case, it was when the drugs could not deal with a recurrent complication in the form of a fistula.
What medication are/have you been on? Do use diet at all to give you some relief from symptoms?

 

[2thFairy]

My GI first suggested surgery when my flare just wasn't responding to medication at all. Remicade was every 4 weeks and was a double dose, 2 different enemas daily, plus suppositories and oral meds, and all others before that had either caused me harm or just lost efficacy. My surgery was elective, so I had many months of mulling over the whole issue. Ultimately, I just couldn't live like that anymore...definitely at my wit's end...and decided on surgery. Even with UC, although colectomy is considered a cure, I am not convinced, but I am so incredibly happy that I had surgery. This is not the case for everyone, however.

 

[Novice]

Thanks for your replies I really appreciate it.
I have been on asacol infliximab and humira right now am on pentasa azathioprine entocort and a bunch of pain relief...
I usually go to soup when I am having bad D but lately it's been just ridiculous pain. My scope a few weeks back also showed rather active crohns... It's just disappointing when I take do many pills already I'm just so fed up and disheartened

Thank you again though

 

[Moe.]

Tried LDN?

 

[HARVinTX]

Hey Novice! I just rejoined this forum today after many years away and yours is the first post I read. I was diagnosed with Crohn's 20 years ago and had my first resection 10 years ago. It was elective and at the time I went through it for the possibility of long-time relief and to eat without pain and fear of more obstructions. 10 years later am I glad I did it? Yes. It was a miserable experience but no bag was needed :ybiggrin: I think your question is when you make the decision for surgery. Not a simple question. I think only you will know when enough is enough. My suggestion is arm yourself with knowledge both on the surgery and potential outcomes as well as the risks of living with strictures. I've been on most of the meds and except for prednisone, they have given me little to no relief. I began obstructing again (6 times in 3 years) and a CT Enterography done 2 weeks ago revealed my assumption that I had a fixed small bowel stricture. I am on day 8 for prednisone and feel miserable. I am planning for my next resection right now. I dread it but I reached my enough is enough.

 

[Andrea30]

Hi all,
I am new to this surgery idea. I have a fistula. So now they are trying to close it since it is small with HUMIRA and I also take Prednisone. They say I will not need a bag. About 18 inches to come out IF all goes well when they are inside. Waiting until after Dec. 25 to decide as I want to give HUMIRA a try. They say it takes 3-6 months for optimum effect. Only had it 2 times so far.

 

[Novice]

Hi sorry for the late response!
No I have not tried LDN as we do not have that in the UK maybe I can ask about that as I am now living in the states!
Thank you both for your experiences and I'm sorry to hear you're suffering too, I am not ready to loose my intestines yet but I would do anything for some relief. I have tried humira and it took approx 3 months to work to its full potential for me. Good luck to you both my next appt is next week I'm hoping to get some reassurance soon
Thanks again for your responses!

 

[Cross-stitch gal]

Good luck with your appt and hopefully you'll get some suitable responses! :hug:

 

[hingrum]

Hi everyone! I am 25 years old and have been diagnosed with Crohn's disease for 10 years. I have been suffering from Crohn's symptoms for 12 years. I have had three surgeries. My first surgery was at 15. Leaving your Crohn's untreated is not an option. Weeks after my first surgery my Crohn's reoccurred. I had my third surgery in April this year. While I have been in remission for years, this surgery was to correct scar tissue damage from my first surgery ten years ago! Surgery is a very serious decision. Put it off as long as possible. Crohn's can effect your digestive system from your esophagus all the was to the anus. For me, the decision for a third surgery was out of practicality. Do I want to spend the money on having surgery this year and prevent hospital visits every one -two years? Financially it made more sense for me to go ahead and have this surgery. The second reason is that it would improve my daily quality of life. It was inevitable. The scarring from my first surgery had narrowed a passage way too small for a pediatric scope. If you decide to have surgery, it should be for the reason that it will significantly improve your daily quality of life. Afterwards, an aggressive treatment regimen is important (the downfall after my first surgery). Good Luck with your big decision!

 

[persephone300]

My surgery is scheduled or Friday, and was recommended Jan 2011 but I resisted until spring this year. My crohns was getting unbearable, more pain, constant blood, yo yo-ing on and off high dosage of pred, with side effects, and I had gotten to the last rung of the medication ladder - which managed to sustain me for most of last year, but had started failing.

For me, it was a logical decision more than anything else, I feel I've wasted so many years of my life "waiting" for things to be better, and I think the surgery will do that, and nothing else can.

I turned 31 last week - I feel too young too, but I honestly feel I've wasted 12 years of my life hoping to be better.

 

[Hobbes650]

Surgery will help you get your life back and that SHOULD be the goal, especially at your age. Being miserable and hoping to get better gets old after a while, and only you can say when. For me, wearing a bag is a small price to pay in return for having my life back. Had surgery at 19 and 44 now, no regrets.

My conversation about surgery started when my doctor brought it up. I had been taking Prednisone for a year but I could not drop below 20mg per day. Even at my best, I was not very healthy- I was thin (25 pounds lighter), and I wasn't very continent (I would occasionally soil myself while driving). All of that stuff wasn't getting much better and I wasn't going to spend the rest of my life like that. But I wasn't getting worse, so at first I decided against surgery. But then my fever restarted a few months later and ended up in the hospital. At that point, we changed directions and went with surgery.

 

[Novice]

Thanks so much for all your lively and supportive replies!

I was very bogged down emotionally but I am slowly starting to perk up again. My health decided to give me a scare and I just worried! I am in constant pain from my crohns my GI thinks its spread to my anus and possibly other places which hasn't been scoped previously. I also had some abnormal pap and biopsies that were worrying me!

But all is starting to look up a little today my GI did a test to see if I have built antibodies to infliximab/remicade if not were going to retry that or Cimzia I trust he has my best interests at heart and I am feeling much more reassured that he will find something to help my quality of life

Thank you again for all your support and stories as I know one day I am almost certain I will face surgery but I agree for now I am going to try and put it off a little longer if possible