To Have Surgery or Not - Concerns

[LylahJean]

I know this may not be the proper place to post this concern, but I'm scared, and I'm angry. People don't understand what it's like to deal with the things that we have to deal with, ad it's frustrating when people think that it's all in our head, or we are being over dramatic cuz really, how bad can it hurt to have an upset stomach... I don't want to have surgery because I have heard that it will only open a flood gate to more surgeries, but at the same time, I'm hopeful that it would help and give me a decent remission for a fairly significant amount of time. I just fear that if I do get surgery, i will lose my kids, and my fiancé, and our house and everything because I won't be able to work, and she is going to be giving birth right around the time I would be having surgery. Even as it is now, I wasn't able to get remicade and my symptoms are getting progressively worse and I feel like I won't be able to handle my job for too much longer because I hurt so bad and have to leave my crew so I can go poop every 20 minutes. I'm so stressed, and so so scared.. I sorry to unload this on everyone, but its hard to keep this bottled up. I wish I had a friend or family member that understood at least a little bit..

 

[PsychoJane]

Hi!
This disease really puts hard dilemma in our way. Don't feel sorry for expressing your concerns. This place is really meant for you to express them and for everyone to support each other. These questions are never easy to answer either...

I was wondering, the reason you can't get the Remicade, is it a financial matter? I'm not really familiar with what is the process in the states to get it, but if I am not wrong, I think there might be a way contacting the company to get it. There is some sort of program, I don't know if you heard of that or if you already did those research and did not qualified for it. Hopefully someone who knows what I am referring to will be able to come and clarify this point. There is is:
http://www.remistart.com/
I'm sorry if this is not pertaining to your condition.

Other than that, I can tell you that from my experience, surgery has helped me a lot. Yes it opens the door for other surgery and it needs to be taken into consideration but as far as I am concerned, I got a 10 years almost free of symptoms before I needed another surgery and since that second surgery, it has been a year and a half relatively symptom free (crohn is fine but I now have occasional joint pain). My condition is good enough and even if it is not always perfect, I am never bed ridden, worst that happens is that I take tylenol and can move on so I call this a pretty normal life.

If ever you have the surgery, are some of your family member open to bring support to you if need be? Sometimes everything seems like such a mountain as we have so much to deal with but are there some people that are more receptive to the challenges you are facing?

 

[LylahJean]

Hi,
Thank you a bunch for the reply. On the subject of remicade, I was on it when I was 14 until I was almost 17 and then I stopped and started it back up again about 6 months ago, and my body just began to reject it. It's been elevating my blood pressure and my heart rate, also making my chest feel really tight and hot, making me dizzy and it felt like my throat was closing. As far as surgery, my fiancé and I will be struggling financially without a doubt, but health is far more important than money. It's been almost 2 weeks since the failed attempt at remicade and my symptoms are getting worse, so I'm pretty much ready to just get the surgery over with.

 

[PsychoJane]

Was there mention of even trying another biologic like Humira or Cimzia? Would that be a possible option? I would even suggest methotrexate but unfortunately, that one takes a little longer to take action so possibly not the greatest idea in your situation?

 

[LylahJean]

I've tried them all but the methotrexate, my body just doesn't accept them.

 

[PsychoJane]

Which surgery are you facing. Is it mostly your colon that is diseased?

 

[LylahJean]

It would be a bowel resection. I'm not certain which area yet.

 

[hitek]

This is a tough decision to make, I was kind of in the same shoes.

After dealing with a pretty bad stricture for a long while, multiple ER visits and losing a lot of weight, I pushed to have surgery done. I had a small bowel resection on august 29. Right now I am eating pretty much whatever I want, and a lot of it, gaining weight and feel pretty good. Still taking it easy recovering but I feel like I am getting my life back. I like you "failed medical therapy" (doctors words, not mine). I was not on any biologics but my stricture was determined to be fibrotic so no amount of drugs would help.

This is my experience so far. If you end up having surgery I wish you all the best, and one piece of advice that seemed to help me recover faster is, follow what they tell you exactly! I had an open incision (not laparoscopic) which is more invasive but that is just what they had to do for my situation.

 

[Merv S]

Hi Lylah J.
I was faced with a similar situation ,but with multiple strictures [4] I bit the bullet and underwent a keyhole resection of 29 Aug.Naturally, I did have some misgivings, but realistically very little other options were available. All the host of medications that I have taken made precious little difference to my version of CD, so to prevent an eventual blockage I took the leap. It is early days yet, but I have noticed some improvement which I hope will continue. I am 69 years old and really needed preventative surgery which might serve to make the next few years a little easier There was never any expectation that this step was to be by any measure considered as being vaguely curative! At least I was able to avoid a stoma, at least for the time being. I sincerely hope that you will experience some improvement in your life if you elect to go down the surgical path.
Best Wishes,
Merv

 

[LylahJean]

Well, to even my own surprise I have pretty much just decided that surgery will be my best option. I have been to the ER at least 60 times just this year and I've decided that, because remicade won't work and I don't want to be on steroids forever, surgery is my only hope for remission. I fear that I will have a stoma for the rest of my life, and I also fear that I will just end up in the same position I am now needing surgery again. I'm just scared I guess I'm a 23 year old male, born in raised in Oregon and swimming in the rivers is what I do.. I'm afraid of having to give that up.

 

[Merv S]

Well, to even my own surprise I have pretty much just decided that surgery will be my best option. I have been to the ER at least 60 times just this year and I've decided that, because remicade won't work and I don't want to be on steroids forever, surgery is my only hope for remission. I fear that I will have a stoma for the rest of my life, and I also fear that I will just end up in the same position I am now needing surgery again. I'm just scared I guess I'm a 23 year old male, born in raised in Oregon and swimming in the rivers is what I do.. I'm afraid of having to give that up.

LJ, Reading through through you original post Í'm not sure which part of the GIT you refer to. If you are taking about the ileum, sometimes an ileostomy is performed to 'rest' the the gut. The information that I received was that were this to have happened in my case it would be a temporary measure and the two ends of the intestine would be anastomosed in approximately six weeks. Obviously this depended on theatre availability.

On the other hand, if you are taking about a colonostomy , the same might apply . I suggest that you take this up with your colorectal surgeon. Either way, even with a permanent bag you should be able to continue swimming, even if you wear a T shirt over the stoma site. Hope this helps.
Cheers,
Merv

 

[LylahJean]

I should be meeting with the surgeon within the next week hopefully, I have scarring at my ileum, however I also have scarring as well as strictures in my transverse colon, along with my sigmoid colon. The severity is unknown, I'm not sure if they are going to do a colonoscopy before surgery or just dive in and figure it out. I'm becoming more and more accepting of the idea of this surgery, I might even go as far as to say I'm excited for it. I have been hearing a lot of good things about it, and I really appreciate everyone's support and info!