To cut or not

[Palehorse]

I have been dealing with Crohn's for several years. In hindsight probably since I was a teen, but not diagnosed until I was in my late 30's. My last colonoscopy as a precursor to getting on Remicade showed not inflammation but scar tissue. This ruled out a drug treatment for me. As the doctor said, it is no longer a matter of IF but WHEN and HOW MUCH of my colon will need to be removed for scarring and or cancer.

That was 3 years ago. I just decided that if I could not get the treatment I had set my mind on, I was not going to continue playing colorectal roulette. The big C word had me worried for a while, but again I decided I simply was not going to allow it to worry me anymore. I've wasted enough of my life being sick and letting my Crohn's and anxiety get in the way of me enjoying my life. Amazingly enough, I have been through fewer flares since then than any other period in my adult life. I have gained weight (from 125 at last hospital admittance to 145) and seem to have much more energy than I used to have.

So my question is simply this: What if I simply refuse to have the surgeries my doctor was convinced I would need? I have learned to push through the pain and simply warn people to stay away from me when I am not feeling well to prevent me from hurting their feelings. I eventually roll through the issues and come out the other side and make my apologies for missed events and or bad attitude. How bad will it get if I do not have surgery?

 

[Daisy123]

Honestly, I think you are playing with fire. Bad pain is a sign something is seriously wrong. My opinion is that it is better to have elective than emergency surgery. It is worth having a repeat colonoscopy to see how things have progressed. I wouldn't leave it.

 

[valleysangel92]

Hi there

I think you are taking some very big risks with your health. Am I right in thinking that this means you are currently on no treatment at all?

The risks of untreated crohns disease are huge. I'm not saying this to scare you, but you run the risk of fistulas, obstructions, perforations etc that can be life threatening. I say this from experience, not from myself but a family member. My step cousin had undiagnosed crohns and it nearly killed her, she spent 5 days in intensive care and is now trying to avoid her 4th surgery.

I strongly advise you to rethink your options and have another chat with your medical team. If you aren't happy with your current care then you can ask for a second opinion.

The intestines have a limited number of pain receptors. This means that pain doesn't set in until damage has already been done. Pain always happens for a reason, its a warning that somethings happening which isn't right. Please don't keep ignoring it.

Elective surgery is always better than emergency.

 

[DustyKat]

Pain is a sign that all is not well. You may have less time and room to move due to the damage that is already there and so complications like obstruction may occur far more quickly than would normally be the case.

If you had said you had no symptoms then I would say let sleeping dogs lie but you don’t. The worst thing about leaving it as is is you don’t know when it will become an emergency and it is bound to happen at some point. Surgery is far better conducted when you are in control and have good physical condition on your side. By going into surgery under these conditions you greatly increase your chances of less bowel being removed, having an uneventful surgery and post op period, surgery being laparoscopic and a reduced recovery time.

Both my kids have had surgery. One was an emergency and one was planned. I can’t stress enough the superior outcome at having planned surgery.

Dusty. xxx

 

[Susan2]

Hi Palehorse and :welcome:

You say that you could not get the treatment that you had set your mind on. Why was that? Did you discuss it with your GI discuss?

From my own experience, I would advise you to consider having some more tests and at least seriously considering the advice of your GI. I ended up in hospital looking as though I was 9 months pregnant and having emergency surgery at 2am in order to save my life because I didn't want to countenance the thought of having an ostomy.

 

[HARVinTX]

ahh the decision struggle...Firstly, I certainly agree with the others that "elective" is far more desirable then emergency. The mortality rate of emergency surgery is significantly higher than elective.

I've been living with crohn's 23 years. I had my 1st surgery in 2002 to remove 16cm of strictured large bowel. I made that decision after 2 obstructions that both landed me in the hospital. Obstructing that low was incredibly painful and disgusting when it has to make its way back up (yeah I was vomiting feces). The 1st decision for surgery was relatively easy. What I did not know at that time is that the highest colon cancer risk is when the large bowel is affected so now I am even happier to have had the surgery.

I had several years of no symptoms and was not on treatment since they had not been effective and biologics seemed to have too many risks. Over the last 6 years I started having obstructions that I managed at home. I am like you and want to be alone while it resolves. I finally started biologics 2 years ago and had a bad obstruction after 6 months on Cimzia (it was my 6th in 4 years). A CT Enterography showed that about half of my ileum was strictured. My GI said I should try Remicade because he did not want me to lose that much bowel. Remicade worked about a year and then i had a reaction and had to stop. I then started Humira and had good results until 3 months ago. My stricture is just too bad for any biologic to continue to work. I ended up in the ER 6 weeks ago in severed abdominal pain. I did not think I was obstructed but I was concerned hat i could rupture but luckily I had not. I saw my GI after that and he said that he could not manage me with medications and I should consult a surgeon. I agreed.

I have surgery set for July 15th and am preparing myself mentally for the changes I will have to deal with after losing potentially half of my ileum and my ileocecal valve. The surgeon did not think I would end up with a stoma this go around but very likely for a 3rd surgery.

This second surgery was a lot more challenging of a decision for me as I would like to put off a stoma until after I retire, which is about 15 more years from now.

So it is a very personal decision that should be made when you fully know the extent of your current disease status. I do recommend meds to fight the inflammation that can continue to affect other areas of your digestive system as well as worsen the scarred area that you already know about. Since you reached out to the forum it suggests that you are beginning to seriously consider surgery. In the meantime try to eat foods that will pass through more easily and get a full workup so you and your medical team can have a plan moving forward.

Good luck and let us know how you are doing. I find comfort in reaching out to forum members for support and they are all very supportive!

 

[Daisy123]

I am facing my seventh surgery if I remember correctly. And it will end up with an ileostomy. I think there are two questions: what is the quality of your life and are you willing to play Russian roulette? My quality is shit, literally and metaphorically! I am a film critic among other things and I can no longer sit long enough to attend screenings and the morphine renders me unable to write. For me, I have come to the end of my battle with not wanting to have a stoma. It is not worth it. And as HARVinTX says it is a personal decision. I hope you are able to weigh things up and make the right decision for you.

 

[hawkeye]

a matter of IF but WHEN

That is what my GI told me last summer (2013) after dealing with a stricture since late 2010 (that's when they did the first CT scan, it was likely the cause of the issues that started a year before that).

Started to lose weight in 2013 and had no energy, pulled the trigger on a surgical consult in late 2013, met with the surgeon in January of this year and had the strictured area removed (left hemicoloectomy) in February.

The section that was removed had begun to perforate so if your GI is using the phrase it is not if it is when, I'd recommend giving some thought to a surgical consult - you don't want to deal with an obstruction or perforation on an emergency basis.

 

[Susan2]

... This second surgery was a lot more challenging of a decision for me as I would like to put off a stoma until after I retire, which is about 15 more years from now...

Why would you like to put off a stoma until after you retire?

If I had overcome my fear of a stoma (and if this forum had been around, I might have done so) and had the operation much earlier, when my GI thought that I should have, I would have found working far, far easier. I might not have needed so much removed and so my recovery would have been quicker.

And now I have so much greater control. There are "accidents" but they are relatively rare, especially compared with what life was like pre-stoma. I do all sorts of things that I never dreamed of - snorkelling in the Galapagos, going on safari in Kenya and Tanzania, sleeping in a Berber goatskin tent on the border of Morocco and Algeria, bathing (naked!) in the hot baths in Hokkaido...:ghug:

 

[Zeppy321]

I have been dealing with Crohn's for several years. In hindsight probably since I was a teen, but not diagnosed until I was in my late 30's. My last colonoscopy as a precursor to getting on Remicade showed not inflammation but scar tissue. This ruled out a drug treatment for me. As the doctor said, it is no longer a matter of IF but WHEN and HOW MUCH of my colon will need to be removed for scarring and or cancer.

That was 3 years ago. I just decided that if I could not get the treatment I had set my mind on, I was not going to continue playing colorectal roulette. The big C word had me worried for a while, but again I decided I simply was not going to allow it to worry me anymore. I've wasted enough of my life being sick and letting my Crohn's and anxiety get in the way of me enjoying my life. Amazingly enough, I have been through fewer flares since then than any other period in my adult life. I have gained weight (from 125 at last hospital admittance to 145) and seem to have much more energy than I used to have.

So my question is simply this: What if I simply refuse to have the surgeries my doctor was convinced I would need? I have learned to push through the pain and simply warn people to stay away from me when I am not feeling well to prevent me from hurting their feelings. I eventually roll through the issues and come out the other side and make my apologies for missed events and or bad attitude. How bad will it get if I do not have surgery?

So your doctor could tell you had scar tissue not inflammation from your colonoscopy ? I've had 2 colonoscopies and when I asked my doctor if we were dealing with inflammation or scar tissue he said he didn't know . :confused2: He said if I respond to treatment meds it's inflammation - well it's been years of me not responding to meds . So he ups my dose of aza or says lets try this med instead. How long did it take everyone to find the right dose and right meds that worked for you ?