Seriously considering surgery. Advice?

Hi, everyone.

Thank you so much for all of your wisdom on this board. I've been reading post after post, trying to learn as much as possible.

Was diagnosed with mild UC in June 2009. I now have moderate-to-severe UC. I struggle with pain, urgency and frequency almost every day, even when I'm not actually flaring. It's all usually in the morning, during my almost 2 hr commute in other words, but I find that waking up at 5AM to "get things going" works. I usually only have to stop once on the way - but that one stop is always a doozy. During a flare, however...well, I'll spare you.

I'm currently on the highest possible dose of Remicade every 6 wks and, clearly, I'm not in remission.

I'm at the point where I'm tired of pumping drugs into my system, and though I know Humira is next (and last) in line before surgery, much of me wants to stop wasting time and get the surgery done asap. My life consists of bathroom trips, working, eating and sleeping. That's about it. I feel in my gut that Humira will only postpone the inevitable.

I don't think that post-surgery life will be all sunshine and roses - thanks to the info offered on this forum - but the way I see it, my life will never be the same either way. And right now I literally have no desire to live this life anymore.

I'm just wondering if anyone here had to talk their doctors into the surgery before all possible meds were tried, and what they had to say to get through to them. The way I see it, it's my life. And this is NO kind of life. Still, I'm nervous at the idea of going through surgery and the post-surgery lifestyle. I feel trapped, honestly.

Thank you for reading!

Dido on everything Marianne said.  It's your decision and only yours to choose how you want to live the rest of your life.  If Remicade, Humira and prednisone would have kept me in remission, I would have taken it FOREVER.  But, it failed and I knew in my heart, surgery was my only option.  I had a Proctocoloectomy with end ileostomy and anal closure 7 months ago and have not regretted it for even one second.  Fortunately for me, everything has gone as it should with no real issues, I've adapted very well.  Yes, at first the ostomy bag seemed so surreal but now, its just like its been there forever and I hardly think twice about it. 

UC is now just a bad memory.  Got my life back.  My stoma's name is Gracie and she serves me just fine.

Ditto to all of the above... "I don't think that post-surgery life will be all sunshine and roses - thanks to the info offered on this forum - but the way I see it, my life will never be the same either way. And right now I literally have no desire to live this life anymore." Could have written that myself five months ago. I know how you feel.

I put my life on hold for a year while I was battling my one and only UC flare. I had just started a new job when I was diagnosed and I was terrified I would lose it because of my illness so I sacrificed everything else -- social life, hobbies, etc -- to make sure I had enough energy to just barely skate by at work. I played the exact same game of getting up in the wee hours to try to 'empty out' before going to work, then coming home after work and practically collapsing into bed. I'm in my 20s and single... during this time my friends were going on vacations, dating, some getting married and having kids, playing sports, trying new restaurants, going to parties... and I was working, doing an enema, and going to sleep. There were many 'rock bottoms' for me but I remember being invited to a Christmas party thrown by my friend and her husband when I was very ill, and my parents felt so bad for me that they wanted to drive an hour each way to pick me up, bring me to the party, and then drive me home, just so I could do something that felt 'normal'.

Since having surgery I've regained a lot of the things I lost, though things still aren't perfect. I was able to start dating again and socializing with my friends after work. I can't play sports anymore like I used to (at least not yet) but I've been able to start jogging again and riding my bike. I went on a beach vacation seven weeks after my first surgery -- being able to do that meant a lot to me. I won't lie, instead of worrying about running to the bathroom to have a BM on the plane I was worrying about running to the bathroom to empty my ostomy bag... but a bag is not a diseased rectum that can choose to empty itself at any moment!

I was lucky that my GI was on my side and we were in sync when it was time for surgery, so I didn't have to face the psychic battle of defying my doctor. But please listen to everyone here when we say this is your decision and yours alone. It's your body, not your doctor's. Your GI doesn't perform the surgery, a surgeon does, and he or she will decide if you are a candidate. There are people who would rather get surgery than ever try biologics, or even ever try steroids. You have obviously given "medical management" a long and fair trial and it isn't giving you the lifestyle you want. There is no shame in this and f--- anyone who calls choosing surgery "giving up." One of my close friends (one of the surprising few who seems to 'get' UC even though she is healthy) summed it up like this when I told her my decision: "It sounds like you can suffer a lot for a long time, or get the surgery and compress that suffering into a shorter amount of time, and afterward get some relief. I would pick surgery too." That's how I feel about it.

Getting through surgery and recovery SUCKS. You'll be in pain, you'll cry, you'll feel frustrated and if you're a believer (or not!) you'll probably ask God why this happened to you. And then the weeks and days will pass and you'll feel a little better. And then you'll feel better than that. And then one day you'll feel SO good that you'll be disappointed with yourself for not feeling perfect. And believe it or not, you'll remember how miserable you were, but the memories of the pain itself of UC and surgery will fade away.

I really wish you the best and we're all happy to share and help in any way. Good luck.

I am just like careening_colon- did step 1 of 3 recently but am currently inclined to just stop here and stick with my end ileo. Anyway, hands down my quality if life is now 10x better than any time I was in a UC flare, and 3x better than when I was lightly simmering; and it's just been a month since surgery. It is a huge decision though. I have been a non-responder to all UC meds other than prednisone, which generally worked like a charm for me. Low carb paleo lifestyle plus Low dose pred kept me in remission much if the time and against the party line, I would have kept the low dose pred going forever if I didnt still flare once a year or so, but I did- and my annual colonoscopies flared me half the time as well. so that was enough for me and though I miss the remission days with a colon, I dont regret the decision overall one second. It is ultimately your decision. few GI's will ever favor surgery as they are by nature meds men and women. Consult with an experienced surgeon or two and discuss pros/cons/risks of the various surgical options and maintain a relationship with your favorite surgeon so you can pull the trigger at your liesure.

I went the full route.... after I was in your situation with remicade, I took humira for less than a year (I don't think it ever really helped.... ) and then cimzia (didn't help either, pred helped a bit).

Then I started having all kinds of crazy extraintestinal symptoms -- I got a rare skin condition that left me with very painful boils all over my butt, had EN nodules all over my legs, an eye thing where it was excruciating to be in the light (I taught classes wearing sunglasses and a baseball hat), and then to top it off, got a 104.6 fever while I was on two different immune suppressing drugs. At that point my only options were experimental drugs (no thanks) or surgery.

I have indeterminate colitis, Crohn's on a lot of papers so insurance would cover more drugs.... but gi symptoms were always confined to colon/rectum.

In any case, there are risks to the drugs too, some of them big, and there are risks to having uncontrolled disease. When I had the fever, I knew that fatal infections are a possibility with these drugs..... when I asked my gi if he thought surgery was a good idea, he said yes, he thought that two years ago too.... but I wasn't ready.

There are plenty of people who have surgery because they don't want to take remicade.... it's a perfectly valid decision.

I had a lot of complications after surgery, but I am so, so much better than I was before.

Best of luck in making this decision and navigating w/the medical people....

I was just like you, and I didn't want to waste any more time being sick and pumping drugs that didn't work into my system. My GI wanted me to try Humira and was adamantly against surgery. I ignored him, scheduled the surgical consult in my own, and just completed step 2 of 3. I feel SO much better than before - I also had a long commute (via Metro in DC, where bathrooms are gross and not readily available), and had to wear depends just to get there. Now, I can go out to eat without running yo the bathroom during and after the meal. I spend almost no time in the bathroom. I have absolutely no regrets. Good luck!

As stated it is such a personal decision not to be made lightly but I honestly feel each person knows when it is their time even with the "what ifs" issues that can occur after surgery.

When you are in the situation that none of the meds are working and your quality of life gets so bad that it is easier to just stay home and you literally live on the toilet and you feel life is passing you by then it's time.

Granted my husband healed well, no complications to date and the only regret he has/had was putting it off for a few more years chasing an elusive remission that did not happen for him.(Also our age and being retired and in our final phase of life made it easier too as living our "golden years" like this really s*cked. We both had/have too much we still want to do.)

It is not a walk in the park for some I know but I believe the higher percentage of folks do in fact get their lives back and adjust to a new normal. Your head has to be in the right place for sure to do this. My husband's GI suggested but he wasn't ready and I suffered watching him in so much pain and distress. I never nagged him or tried to convince him either. He made up his own mind when he just couldn't take it anymore.

Hi Jennifer:

I feel your pain!! I was diagnosed with moderate UC in February, 2012 and all available medical intervention failed to give me any relief.  My health continued to deteriorate until I was told my GI specialist that surgery was the only option. By that time I was so sick that I was anxious to get it done.  I was scheduled for an "urgent" procedure which happened to be 30 days from that time.  By the time I got to hospital on the day of surgery I was hours or days away from cardiac arrest because my electrolytes were so out of whack.

Following surgery I required IV infusions of electrolytes and a blood transfusion to correct anemia but despite that, everything went well.  I am now 5 weeks post-op and almost finished with the dreaded Prednisone and I feel better than I have in over a year.  I still tire easily but have loads of energy so have to remind myself that I have to take things easy for a while longer.

As for the life change aka ostomy - I have learned to care for things with no problem but I still have a hard time accepting that it is a forever thing.  I do have the option of re-connection at a later date but it means 2 more surgeries (1 major and 1 no so major) to do that.  I am 63 years old and I am not sure that I want to go through that.  In addition, everything I read tells me that the success rate might not be worth the surgery.  I will discuss further with my Surgeon and decide later.

The tissue in my rectum (which they have to maintain to give you the reconnection option) was very inflamed and damaged from the extended use of Prednisone so the surgeon brought it to the outside of the abdomen to drain and heal.  So, I have 2 holes in my abdomen.  The end of the rectum (called a Mucous Fistula) originally had an ostomy bag to collect drainage but now only has a dressing.  That will also be there forever if I do not have the re-connection done unless I go through major surgery to have it removed.  So, still decisions to make BUT the good news is that the C is no more and I feel healthy!!!!!!

I could not live the way things were.  Good luck to you on whatever decision you make.

 

2) The week after surgery I had the same energy level that I had before surgery. It's not that surgery is easy, it's just that the UC can be that bad.

That's unreal.

I'm sorry, but you must have been in superb health, UC or no UC, to recover that quickly. It's nearly 4 months after surgery for me, and I'm still absolutely knackered. I'm not alone in that either.

As far as the original topic goes, I chose surgery because there wasn't really any other choice. I had to have it, really - everything else had failed.

Re Humira. If the maximum dose of Remicade doesn't work, then Humira has an extremely low probability of working. Personally I would book an appointment with a colorectal surgeon and see what they have to say. Best of luck.