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

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Posted 2/3/2009 12:48 AM (GMT 0)
My surgeon mentioned when you become steroid dependent, it's time for surgery. I have pretty much crashed since getting off the steroids and the steroids have left my body severely aged.

I'm just wondering everyone else's thoughts on how you know it's time? I talked to my surgeon's nurse today and explained to her what was going on (also talked to my GI's nurse too) and with my limited options...he basically recommended only Tsyabri, in which I'm very much opposed to at the moment, so that leaves Imuran and then probably surgery...

Would love some input!
Posted 2/3/2009 1:25 AM (GMT 0)
Hi Kaycie I know when I had surgery the decision was taken out of my hands and was told that there comes a time. I knew I couldn't go on the way I was and was ready for it. I didn't do really great on the Rem. and had gotten sick and then things got bad .Did you talk to your Dr. and ask what surgery would involve. It makes it hard deciding on meds when we are not sure if it is the best decision and the same goes for surgery. But for me it was surgery was the only decision. Hope this helps some in your decision making. lol gail
Posted 2/3/2009 1:42 AM (GMT 0)
I know it's a pretty big decision..I would be apprehensive too. The only words I can offer are from my aunt(who is a really good doctor) who said that she saw vast improvement in patients who finally decided to have their surgery done.

I wish you the best of luck in your decision!! Keep us updated.
Posted 2/3/2009 3:56 AM (GMT 0)
Thanks guys. I appreciate it.

For some reason, after this weekend, I just decided, I don't want to continue like this. And, some of the biologics are really scaring the dickens out of me. I have an 18 month little girl that I need to worry about and I don't want biologics harming my body.

I'm at a huge crossroad and I'm hoping my docs can walk me through this one.

Does anyone know the steps to determine surgery? Part of me wonders if I'm even ready? Today wasn't terrible. The thing is I'm up to 6-9 pain pills a day, I didn't have a BM at ALL yesterday, but I'm obviously masking my symptoms. Would a CT show sufficient information to help determine surgery or would another colonoscopy be required?

I'm just scared of it all, frankly....
Posted 2/3/2009 11:37 AM (GMT 0)
Hi Kaycie--Don't know if my story will help but sounds like we're in similar situations.

After 24 years of no surgeries, I'm scheduled for a big one--total protocolectomy and ileostomy at the end of the month. I had many tests last summer and tried humira for 6 months. I lost 138 lbs over a year's time, I'm completely depleted of vitamins. . .it's time for surgery. For 24 years, my doc and I were able to "solve" things with meds and lifestyle changes but now, I'm at the end of my rope--and in tough shape. R-v fistula is out of control and there is little I can eat. I refuse to go on steroids and that was the last option. Very difficult decision. My GI and I held off for as long as we could. He sent me to a surgeon and I will have 2 second opinions (one from a local GI and another from a specialist). At first, I was only looking at a resection---removal of terminal ileum and some of right colon. Now, I'm looking at the whole shebang and an ostomy. My quality of life is awful right now. I'm exhausted, in pain, and had to stop working which literally broke my heart.

I would hope your GI and surgeons would do a round of tests. Not that they are fun but it would be opinion that they should know what's going on there---ie. MRI, CT Scan or whatever is appropriate.

I wish you the very best.
Posted 2/3/2009 1:01 PM (GMT 0)

kaycie....not sure exactly what your ailments are, but (and this may sound too simplistic) I would think you need you need to list what you hope the surgery will accomplish if it goes perfect and then what you will accept as a minimum (in other words what is the minimum result that will make the risk worth it)

Once you do that you might want to discuss it with your doctor and...repeat "and"...the surgeon (surgeons and the primary docs do not always agree on potential outcomes)  ask them if you are being practical...ask about long term results....ask about future treatments, options and surgeries.

For me I didn't suffer with major massive pain each day...I just started getting partial blocks on a semi-regular basis and those are very painful.  I also felt nausea most days. Things got to the point that very soon I would rupture so I chose surgery....my doctor agreed, but he also kept saying that surgery was the LAST option.

 I do not understand the idea of doing surgery once the steroids quit working ...obviously that statement is tied to your specific symptoms....I have not done steroids of any kind (by choice) in over 5 years.  I just won't do them.

I understand your fear of Tysabri....but you may want to review your choice in that...surgery is certainly not risk free....there may be a more direct and immediate risk or danger with the surgery than there is with the drugs.  The dangers with tysabri seem to be linked to several other drugs so you may not be in as much danger as you think.  Also the negative reactions seems to be found more often in the MS patients than with the crohns people....that indicates to me a reaction to the drugs more widely used in the treatment of MS.  If I remember correctly there were no deadly adverse reactions until the MS trials.  I was on Tysabri for almost 2 years during open label trials

Lastly.....I have been told by three different gastro's and my surgeon not to expect a cure from the surgery....crohns will always be there unless of course they remove every part of the digestive tract including my throat, mouth, and so on....  Maybe one surgery is all I will need...but  it is doubtful...and for some it seems that once you go down that road you have to get back on it fairly often.

Just another POV....you have a tough decision to make...good luck

Posted 2/3/2009 2:00 PM (GMT 0)
Hi, I would second hspenser - unfortunately most people don't just go through one surgery, and it is highly likely that (a) the disease will come back at the site of the surgery and (b) that you will have to take strong maintenance medications - I am currently on azathioprine but looking at the biologics so there's no guarantee that you would be able to come off them.

I decided to have surgery because my quality of life was so poor that I couldn't go on the way I was - pain every time I ate, and an obstruction that I was worried could rupture if it wasn't removed.

Sorry that's not much help! I would second the recommendation of thinking about what is the minimum result you will accept in order to go through with it.

Good luck.
Posted 2/3/2009 3:00 PM (GMT 0)
I am with Hyspenser and Caz81. I had an emergency resection the first time and 3 years later I had to have another because the disease returned to where they reconnected me the first time. My decision on the second one was "my quality of life". I was pukey every single day and felt like crap all the time. I hope that helps a little.
Posted 2/3/2009 4:49 PM (GMT 0)
Right now I'm at the hospital waiting for my Laproscopic resection surgery. I had no choice except or refuse having a surgery simply because i had a very bad perforation which led to a leakage to the out side of my GI tract(abscess) that left me really with now options . also your dr is right abut being Steroid independent. but I think when the doctor decide for a surgery we are really have no choice. all we have is prayers and hope for the best to come after all.
I will keep every one posted and updated of what is going to happen soon.

best of luck for all
Hanoon
Posted 2/3/2009 5:33 PM (GMT 0)
Thanks guys.

Just got off the phone with the nurse from the GI's.

My choices are:

Tsyabri

Humira

Cimzia

Methotrexate - If I go this route, I'm going to have to look for a surrogate, for obvious reasons.

So, obviously, surgery in his mind isn't an option, but I do have limited avenues as oral meds are just not in my list (except the methotrexate, but I think that's a shot, right? In some cases I know it is)

hspenser - Thanks for your POV.  I have not 100% ruled out tsyabri, but I'll be honest that I'm still petrified of it.  I have already dealth highly with anxiety from this DD and losing a child.  So, that on top of things will only intensify it.  But, according to the studies, there was a Crohn's patient that did die. The issue is combining immunosuppresants with Tsyabri.  So, for obvious reasons, I'd have to wait until the ABT cleared my system and I was no longer completely suppressed before I could start that drug.  This is kind of short, but I'm at work...

And to everyone else, I do appreciate all your POVs!  They are helping.  I think my surgeon might order up a CT and a few other tests to see what he says.  I would like to put the surgery off longer in order for me to have more children in the future as having surgery will only complicate my already complicated pregnancy issues.  I do whole-heartedly understand that opening me up once typically means re-opening again in the future for a variety of reasons.  My quality of life just plain sucks.  All I do is work and go home.  I do nothing else.  I hurt all the time, I'm nauseated all the time.  I have yet to lose weight, but the pain pills are only masking a ton of the issues at hand here...I'm frustrated and I need something to work..  If I didn't HAVE to work (work for my parents and they need me), I would be off on disability...

Gotta run for now..

Posted 2/4/2009 8:45 PM (GMT 0)
Hi, just wanted to share with you my experience with surgery. I have had C for 15 years and avoided surgery like the plague. I did everything not to have it even when my GI had said it was time for about 5 years. I finally got to a point where I couldn't eat anything. Night sweats, fevers, anemia. I was in hell and ended up in the ER with usual C pain and fever. I stayed in ICU for a week awaiting surgery, still refusing to do it. Finally everyone talked me into it and here I am 6 weeks post op and I feel amazing. If you are desperate and sick and the meds aren't working absolutely do it! I was definitely an advocate for pushing surgery off until absolutely necessary but, now I think I waited too long. I had a horrible abcess and they ended up taking out a portion of my sigmoid colon and appendix, cecum, illeum and other than a little diarrhea I have my life back!! Don't be affraid if you have to do it, do it now before it gets too late. hope this helps...
Posted 2/4/2009 8:49 PM (GMT 0)
OMG I forgot to tell you that I have an 18 month old baby girl also!!! And she has her mom back!!!! 2-3 weeks of my husband and my mom taking turns watching her and I'm back with more energy and life to give her.The energy definitely comes back slowly, but it gets better and better every day!! Do it for your baby! Youre in my thoughts :)
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