How do you make the decision for surgery?

[okhoney]

After 7 years of Crohn's that has been refractory to just about every treatment available, my GI (whom is wonderful and whose opinion I value and respect) thinks it is finally time for surgery. The last thing he said to me as I walked out of his office a week ago was "it's the right thing to do."

I have been on Entivyo since it came out over the summer and we finally had to come to terms with the fact that it was not working. Yes, it's a slow-moving drug, but after 7 months and a colonoscopy that showed zero improvement from a year ago, we had to throw in the towel. Unfortunately, that means that I am out of "traditional" treatment options. I have tried and failed just about everything available.

To give more information, I'm 29 years old and my Crohn's has always been limited to my colon, rectum, and peri-anal area. The peri-anal disease is fistulizing and has been problematic and resistant to treatment. Surgery would entail a total proctocolectomy resulting in a permanent ileostomy.

Obviously, no one wants to hear this and no one really wants to come to terms with having a major organ removed. I'm really struggling with coming to a decision.

i've done just about every conventional treatment and also many alternative treatments (acupuncture, diet changes, body work, therapy). I currently follow a paleo diet and have been wondering if going on an auto-immune version of the diet would be enough to get me into remission. That being said however, I'm not sure how long that would take and don't know if I can continue to restrict my diet even further.

How do you finally decide to take the plunge in to surgery? The finality of it really scares me. It's also difficult because I'm not even as sick as I was a few years ago. To be clear - I am not well. My disease is definitely active and I border the moderate to severe threshold depending on the day. Currently, I take percocet and immodium almost daily in order to be able to get out of the house and go to work. I know that it's not sustainable and practically it does seem like surgery would improve my quality of life, but I'm having a hard time catching up emotionally.

i've met with a few surgeons and found one I really like, who was very kind to me in the consult and demonstrated an amount of empathy I've never experienced with any other surgeon. I'm going in for an MRI on Monday to just validate that my small bowel is not involved, and I've been trying to get in touch through the CCFA with others with ostomies so that I can have a better understanding of what life might be like.

It's strange in that I feel like i'm taking all of these steps towards surgery, but mentally it hasn't sunk in. i haven't officially made the decision.

For those of you who had a choice (i.e. it wasn't an emergency situation) how did you come to terms with it? How did you finally make the decision? There's a part of me that feels like it's giving up, but on the other hand I know that my quality of life is pretty poor, i've just gotten used to it.

I apologize if this is long and rambling. i'm usually a much better communicator, but this is all really emotional and overwhelming and I feel pretty alone in all of this. Any help or advice would be really appreciated.

 

[Justanothercp]

For me it came down to a quality of life issue. I was in a lot of docomfort if not pain daily. I felt fine as long as I didn't eat....
My job, marriage and recreational life were suffering.
It was so long and incidious that I didn't even realize how much I was compromising.
For me it was the best decision, so glad I did it. It's been about 12 years now. I still takes Meds and have a very careful diet that works for me. I imagine I'll need surgery again at some point.
Good luck.

 

[lookame]

I am on the verge of surgery as well. I've been questioning whether it's the right direction or not right now. It's a difficult decision, especially if you consider that you've been worse. Like you I had a recent scope which showed no improvement with the treatment I'm on and I'm also running out of options(allergic to Remicade, humira isn't cutting it and idk about trying other biological treatments) I've been referred to a surgeon but have yet to speak with them and have yet to see my GI for the follow up after the colonoscopy so right now I'm sort of in a state of unknowing. What brought me to wanting to even speak with a surgeon though was I was going to the bathroom several times a day, urgency, bloody mucous and accident issues. My diet had been cut down to chicken soup, popcicles, jello, ect (what I was put on when I was hospitalized) and my weight was at 95 lbs. I'm on prednisone right now and it's helped but I'm still having pain and blood/mucous...the prednisone basically makes me crave fast food so I've been putting on weight because of that.

In determining when it's time for surgery I think you should look at your quality of life. its also great your reaching out to see how your life will change with an ileostomy (I plan to go to an ostomy support group meeting as well).

 

[Crohns08]

First of all, sorry you have been faced with this decision.

Secondly, to give you a history on my situation I was diagnosed in '08 before my 16th birthday. It was mild at first but progressed into one of the most severe cases my doctors have ever seen. I have tried and failed Humira, Remicade, and Cimzia. It seemed that the only thing that helped me was Prednisone as it had gotten me out of danger multiple times in the hospital. In 2011 I had developed fistulas and a massive abscess that they had to surgically drain and the recovery from that for me was daunting and some of the worst pain I had been through emotionally and physically since I had to have nurses and my mother help me go to the bathroom, hear my screams, and clean me up for a month while my father was great moral support and made sure I got the best of care.

It was the following year I went to see my doc after flaring again that he suggested surgery to remove an area he believed to be calcified. I loved my GI so I went to the surgeon and he told me this was not life or death and he didn't want to perform a surgery on me incase I need one in the future. Plus he didn't want to risk infection unnecessarily. He did mention diet and exercise and said if I really wanted to avoid surgery that I should try and make a real change to see what it did for me and that I had nothing to lose anyways. So it was with that advice that I went on the SCD. I followed it step by step strictly and within a month I felt better. By 5 months I was up and doing things with my friends again and going back to school as well as doing yoga and working out. I was able to eat beef again and salads for the first time in a LONG time. I was not ready for surgery and this is my own story and experience.

 

[Grotbags]

I had struggled on with severe Crohn's for 26 years before I had surgery ( last Dec, complete removal of large intestine ), I too had come to the point where none of the meds were working any more, even steroids were having no effect.
For me it was a no brainer, they had also found pre-cancerous cells, so that made up my mind for me really.
I can't describe how much better my life is now, I used to be in constant pain, and have nausea most days, all that has gone.
Living with a stoma is easy compared to dealing with severe Crohn's symptoms.
But I'd suggest the key to success is to have a positive mental attitude about the op, sure it's scary, I was bricking it, but I was bricking the thought of bowel cancer more.
I was at my GI consultant last week, my CRP level is at an incredible 4 !.
Unheard of for me, I'm normally over 200, plus the only meds I'm on is Imodium and calcium supplements wooooohooooo !.

 

[2thFairy]

I freaked out when my GI first suggested surgery because I just wasn't expecting to hear that. Another 6 months went by before I agreed to have it done. By then I was beyond miserable and with no hope in sight of a positive change with my then current treatment. I was also concerned with the impact of having a colectomy would be on my husband and marriage. His response was "Well, what else can you do? There doesn't seem to be an alternative and what you're doing now isn't working." We talked about the upcoming surgery and life thereafter extensively several times and made the decision together. I realize that sounds really corny. With every other surgery I have had, I made the decision without a second thought other than it was up to me alone, but with this one I was so unsure of what to do, I needed the extra reassurance that he was in agreement because it would impact both of us.

As the day of surgery got closer and closer, I was changing my mind back and forth several times a day, but on the day of surgery I was so beat down and tired, I was ready for it. Something had to change and this was it. I haven't regretted my decision one bit. I love my stoma and my new-found health. Not everyone has as positive of an experience with an ileostomy as I have, but for me, I truly didn't see another way to improve my situation and it really has been the best thing.

 

[okhoney]

Thank you for the replies. I've been working on trying to get as much information as possible and trying to speak with others who have been through this. I have tried some pretty drastic diet and lifestyle changes, but it never seems to be enough to get me in remission. It really is becoming a quality of life issue at this point. I'm still not sure what my final decision will be, but as scary as it is to say out loud, I'm leaning towards surgery. There are more days than not, where I think I just want this diseased thing out of me! Frankly, I'm pretty tired of being sick and having my life revolve around this disease whether it's through treatments or diets or acupunture or whatever. I'm tired of spending all of my emotional energy on this disease and still not getting any better.

 

[The Real MC]

I had a flare-up for five weeks, and after I finished the meds it came right back. The CT scan showed a couple of fistulas and that's when my doctor recommended the resection surgery.

 

[24601]

Hi okhoney,

I didn't comment before because I've only ever had surgery for strictures and never had a stoma - and though the decision to have surgery can still be very difficult it is significantly different to the decision you are having to make about a permanent ileostomy.

I just wondered if you'd checked out the stoma sub-forum because I know there are many more people on this forum - in addition to Grotbags and 2thFairy - who are living with a stoma and have useful experiences to share.

Wishing you health and happiness

 

[okhoney]

Thank you for the suggestion. I have looked at the Stoma subforum as well. As i'm sure everyone is sympathetic to, this is such and emotional and overwhelming time and I truly appreciate any support that people can provide!

 

[hawkeye]

The stricture in my large intestine wasn't going to get any better and when my GI said "it's not a question of if you need surgery but when" I started giving it serious consideration.

That was about the time it started to impact my quality of life - up every night with pain, not sleeping, not eating, losing weight, tired. So I pulled the trigger on surgery.

 

[Fernando1]

I will divide my answer into two stages:

All these symptoms together

Stage 1 - Need surgery but I am in denial:

Continual loss of weight - dancing around tiny portions of food to avoid blockage
Pain every day - a dependence on pain medication
Continuous diarrheah with no end in sight
Diagnosed by scopes and colonoscopy fistulas and partial blockages
Distention with loss of gas coming out the other end and belching at the top
Throwing up a couple of times a week because of blockage
Remicade and Humira don't work like they used to

So l live with these thinking I can manage. Please note that if you only have loss of weight or diarrheah is not an indication for surgery. Its when these are ALL present, the obstructions arrive and the fistulas appear that this post is emphasizing.

Then you move on to the can't wait no more stage:

Stage 2 - Several trips to Emergency room and stays in the hospital
Full blockages with throwing up every day
Major loss of weight and getting worse, continuous pain

Its the second stay at the hospital waiting for the blockage to go away - 5 days - that made me fully realize that no treatment or waiting is working, that I need surgery.

Your risk when you wait and wait: Full blockages that can last a week or more, they begin to reappear every other week. Because of the pressure in the intestine, it presses on the walls and creates fistulas. Some of these fistulas can burrow into vital organs, for example the bladder. You schedule the surgery a month from now but you get another full blockage and go to another hospital stay waiting for the grass to grow.

See where you are in this symptom continuum. The first stage eventually goes into stage 2. In my case is was six months.

Good luck

 

[hawkeye]

Your risk when you wait and wait: Full blockages that can last a week or more, they begin to reappear every other week. Because of the pressure in the intestine, it presses on the walls and creates fistulas. Some of these fistulas can burrow into vital organs, for example the bladder. You schedule the surgery a month from now but you get another full blockage and go to another hospital stay waiting for the grass to grow.

The intestine can also begin to perforate - that is another danger of waiting. When I had my follow up after surgery, the surgeon mentioned that the pathology of the diseased section that was removed found evidence that perforation was beginning.

 

[SupportiveMom]

This thread is AWESOME! Thank you okhoney for starting it. Since my kid got a second opinion recommending surgery I have been asking everyone I know that has had surgery this question. We have done the Pros & Cons list too, but the one thing we haven't done is a quality of life list, all the things we have now compromised as a family and as my daughter individually because of this disease and what surgery might give her back. Looking forward to reading more comments!

 

[2thFairy]

Biggest pro for me (besides not being in pain): After almost 20 years of being homebound, the last 10 years of which I made a living working from home, I was finally able to confidently leave the house long term and returned to school. Next week I start my new job as a surgical tech, assisting surgeons during surgery. I would have NEVER been able to do that before surgery!!

 

[hawkeye]

the one thing we haven't done is a quality of life list, all the things we have now compromised as a family

Excellent point, one of the deciding factors was not feeling well enough to go play outside with my 2 year old in the yard.

 

[Grotbags]

My OH of over twenty years commented that I was a different person after my surgery ( in a good way) but I suppose being in pain, feeling tired and sick every day will make you into a grouch.

 

[SupportiveMom]

The lists we are making as a family on compromises because of IBD has been eye opening. I can't believe how much this disease can suck out of you & it happens in little ways you don't notice until most of your life is compromised. When you start listing them, and see what gets crossed out after surgery decisions certainly become easier.