Should I have had surgery?

[moose185]

I recently got a Ileocolic resection surgery about 4 weeks ago. I'm having major regrets as I read a lot of people only go through surgery as a last resort. In my case I didn't do this. I had mild to moderate active inflammation in my terminal ileium. I have tried a few meds like Budesonide, 6mp, azathrioprine, prednisone but still had active inflammation. side effects were pretty bad on these felt sick and really run down on them. I had to stop them. for about 8 months I wasn't on any meds.

My fatigue and joint pain have been awful causing me to quit two jobs in the last year. certain foods cause me pain, my stools were loose but didn't cause me much trouble. I had occasional stomach pain.

my next options were to try infliximab or humira. After looking at the scary side effects such as Lymphoma (cancer), drug induced lupus, MS, Other side effects. I know these are probably rare but they do exist. I decided not to try any of these and go for surgery.

my consultant told me that surgery has good long term effects and can put patients into remission.

I'm having serious regrets thinking I should have just done nothing. I still had some quality of life. can't work which has been a big problem financially though.

Do you think i've rushed into getting the surgery? do you think you would have got surgery in my position? why do so many avoid surgery from what I read.

 

[24601]

I think the best thing that you can do is look to the future rather than thinking too much about past decisions. It's very easy to look back and wish we'd done something different and I think many of us do. But we're faced with tough decisions and I think we make the best choice we can with the information that we have at the time and in the situations we find ourselves in.

Whilst working through some of your questions may help you make decisions for your future treatment, right now it's still early days after your surgery and I think it would be good to focus on your recovery. How are you feeling now?

It doesn't sound like you were very well before surgery and not being able to work is a significant impairment to your quality of life so I hope that you will enjoy much better health now.

Are you on any maintenance treatment to prevent disease recurrence?

 

[DustyKat]

Do you think i've rushed into getting the surgery? do you think you would have got surgery in my position? why do so many avoid surgery from what I read.

:ghug:

It is difficult to say if you have rushed into surgery because only you know how you felt in the lead up to it. What I will say though is that nobody makes the decision to go into surgery lightly and therefore for you to reach that point means you had very good reason to be considering it. It is only natural after the event to start considering the what ifs but again, you made that decision for a reason and at that given point in time that reason was a very valid one.

It is very hard to predict if someone else would have done the same in your position. I have no doubt that there will be those that will say they would have tried the biologics and others that will agree with your stance. I have found over the years of reading the forum, and also in our own experience, that the staging of the disease (mild, moderate, severe) doesn’t always correlate with how you feel or respond to treatment. Having pathology rate your disease as mild to moderate is no guarantee of lesser symptoms as opposed to someone with severe disease. Some people can have severe disease and have next to no symptoms.

It just makes it all the harder to navigate your way through making what are very difficult and potentially life changing decisions.

The reason people avoid surgery is simply because surgery is finite. By that I mean, once you remove that piece of bowel it is gone for good and you don’t have an endless supply of bowel.

I do take exception at times to articles that state surgery is a last resort as it is a very generalised way to present things. Yes, for many it is a last resort and that is because of the type of disease they have in that it buys them time. But for others surgery is not a last resort, it is an only choice due to the complications they have.

24601 has given very sound and sensible advice moose185. Draw a line in the sand and move forward from that point and I wish you much luck and good times ahead. Onwards and Upwards!

Dusty. xxx

 

[Justanothercp]

My biggest regret was waiting too long too have surgery. Why suffer and let your quality of life get horrible, I mean you quit 2 jobs due to your quality of life, that's bad enough. I think you're decision was fine, look forward and move on!

 

[Caitlin84]

I'm 10 days post op and surgery was not a last resort for me. It was an informed decision on my part. I do not regret it, though it is still early days. My GI told me 80% of Crohn's patient have surgery and that given the severity of my stricture, it was probably inevitable. I could have waited, exhausted all other options, but I do think having surgery now was the right choice for me. While many ppl feel that surgery for any reason should be a last resort--and often times with good reason--I have read many posts here from ppl for whom surgery was definitely the right decision for them. There is not magic cure, everything has side effects. You may be having some difficulties now that are from surgery, but chances are you would behaving some difficulties with whatever path you had taken. Be confident in your decision and focus on recovery. Hang in there.

 

[moose185]

Thanks for the replies. I just see that everyone only goes for surgery as a final last resort. I'm the only one which actually chose it before taking biologics.

You say that surgery is finite which is true but getting a serious side effect from biologics like cancer, MS, Lupus can also cause long term effects. This is what put me off I suppose.

My bladder issues is what is getting me down. They have never been the same after the surgery. It's extremely painful to pee and i'm having erection problems. These problems alone already make the surgery not worth having as there great problems than what I had before.

 

[Clairegard1979]

I am meeting my surgeon in two weeks to discuss an operation. I only got diagnosed last December but had symptoms for about 16 years.... I have tried predisolone and Entocort and taken pentasa since December. I do have some not so bad days but when it's bad it's bad! I feel like an operation is my only choice now. The side effects from the steroids were awful. I hope your bladder issues get better soon. How long were you in hospital for and how long would you say it took to recover? Thanks

 

[moose185]

I was in hospital for 7 days, it's only been 6 weeks so my bladder issues could be part of the healing process well i'm hoping so. I'm still in a lot of pain so i'm still recovering. I've heard it takes about 3 months to fully heal.

I was more mobile by week 4 before that it was very difficult getting around.

I'm not a fan of taking steroids they made me a lot worse, same with immunosuppresants and biologics scare the hell out of me. I've read journals that there linked to so many diseases.

The surgery does have a good success rate, I guess i'm just unlucky right now.

 

[Clairegard1979]

I was in hospital for 7 days, it's only been 6 weeks so my bladder issues could be part of the healing process well i'm hoping so. I'm still in a lot of pain so i'm still recovering. I've heard it takes about 3 months to fully heal.

I was more mobile by week 4 before that it was very difficult getting around.

I'm not a fan of taking steroids they made me a lot worse, same with immunosuppresants and biologics scare the hell out of me. I've read journals that there linked to so many diseases.

The surgery does have a good success rate, I guess i'm just unlucky right now.

Thanks for your reply did you have keyhole or open surgery? Didn't realise the recovery was that long!

 

[DEmberton]

Thanks for the replies. I just see that everyone only goes for surgery as a final last resort. I'm the only one which actually chose it before taking biologics.

Yesterday I was prescribed Budesonide and will then go onto Aza, but these are the first Crohns drugs I've ever had (and I haven't taken any yet). When I was finally diagnosed with something the consultant said they could try to treat it with drugs but in his opinion by that stage (having a stricture) it wouldn't work and surgery was the best option. I don't like the idea of taking drugs long term, and the more powerful the worse, whereas surgery gave the opportunity of a quick fix. And I'm so glad I did it - felt much better since.

So it's not just you.

 

[moose185]

from what I've heard from others surgery is a good option. however why am I having all these bladder issues? if these weren't there I would say the surgery was worth it.