Is surgery giving up?

I've had ulcerative colitis for 6 years. For the first 5 years, it was pretty much a non-issue, controlled with Lialda and prednisone. But the past year has been a nightmare, and nothing is helping much. I've been in the hospital once, had two blood transfusions, and basically felt like I'm trying to claw my way out of a hole that will never end. I have: added more prednisone, added azathioprine, tried Entivyo, and tried Remicade. I have tried acupuncture, Chinese herbs, rolfing, visceral manipulation, lymph drainage, food restrictions, resting, exercising, yoga. I felt a little better on Entivyo but my colon didn't heal at all. My colon almost healed on Remicade, but as I tapered off of prednisone, everything's crashed down again. I'm waiting to hear test results about whether I have high enough levels of Remicade in my system. If not, having more frequent infusions may help. Otherwise, though, my options are running out. My doctor says I could consider Xeljanz, but surgery may be a good option.
Initially I didn't want to even consider surgery, but it's seeming more reasonable now. I'm so tired of living on the UC roller coaster. I'm tired of missing work, of not being fully present for my kids and husband, of not feeling like doing anything. I'm tired of being on a bunch of meds.
So here's my question: is it naive to think that surgery would give me my life back? Sometimes the medical field makes surgery seem like a simpler option than it really is. I know it would be a major undertaking, but it seems like I would come out on the other side with a more stable life.
Part of me thinks that I should be able to control the UC without surgery and like having surgery is like giving up.
I know no one but me can really answer the question, but I'd like any advice from others dealing with UC.

Surgery is not giving up. I think it's the opposite. Choosing a new drug, diet, or surgery is fighting. If your quality of life continues to decline I feel like that is letting the disease win. Making tough decisions about what drug to try or surgery to do is brave.

Much like KS I wish I had done surgery sooner. However while for the majority of patients in the long run surgery isa great decision it is not with out risks. And it is not an easy recovery for a lot of patients. I think some doctors gloss over how tough the recovery is.

One year post total proctocoletomy I am the healthiest and happiest I've been in several years but it was not easy. The 12 weeks following surgery were hard, my recovery was tough but was worth it in the end.

Ultimately you have to decide what is best for you and your family. Besides being really sick part of how I knew it was time was when my husband and brother both said we are on board with surgery if it's something you want to do. I then realized how much my family needed me well again.

I haven't had surgery but am glad it's an option if needed. No, it's not giving up, you gave many treatments a good try, it may be time to talk to a couple of surgeons and find the best one if you decide to do it in near future. Getting a second opinion from a diff. GI might also give you more info, they'll need to see your recent scope.

Surgeons don't always have great personalities so research their success and number of colon ops and rating from people who've had the op you are considering, this will take a little work on your part. Ask your GI and nurses (esp nurses) who they'd choose if their daughter needed this. Can you tell I'm a control freak? I need a cataract operation and have 2 opinions so far and will talk to the actual surgeon next week (3rd opinion).

Talk to your spouse and make it a family matter so everyone knows (but doesn't get to tell you what to do).
Good luck with whatever you choose.

It was the best thing I've done for myself, probably ever. So no, I wouldn't say it's giving up. Giving up what? A future of doctors, hospitals, weird diets, drugs and toilets? If so, then yes. I gave up all that almost 2 years ago, and it's been smooth sailing for me.

Some people do better than others, but they say the very large majority never regret the decision. The best thing you can do is talk to a surgeon, get patient referrals, read a ton... I notice here, there aren't many people who continue to post after surgery, most people who have successful surgery, for either a jpouch, or an ileo, take off and live their lives.

Surgery is tough, but looking back, it wasn't as big of a deal as you imagine when you read about it. I would do it again if I had to. I might as well had done it many years before and avoided all the doctors and drugs. I could have been living my life healthy. instead, I spent almost 10 years struggling, avoiding events, sitting home, missing out on career opportunities... and I was chubby and probably suffered long-term consequences from steroid use. Pointless in my opinion.

Surgery is definitely not giving up. It's finding a means of healing yourself. And improving your quality of life. I'm 7 days post total colectomy. I've already gained 7 lbs. The recovery is difficult in the first couple of weeks.

And to play the devil's-advocate position, just remember that everything has risk and surgery is no different. As nothing should be all covered in roses and only sugar coated. A small percent do have difficulty after their surgery. Just know what to ask surgeons, and ask about the odds of the good and the bad (like abscesses, fertility risks, nocturnal seepage, chronic pouchitis, etc). Some have had trouble and as an example, here's SolomonSeal's story: www.healingwell.com/community/default.aspx?f=38&m=3263001

Keith can attest that chronic pouchitis isn't nearly as bad as UC.

It's all about knowing what's possible and accepting a small amount of risk for a benefit. And here we have many real-world experiences of those who've experienced stellar outcomes, had troubles and so on (better than a dry text book lol).

Depends on what you believe about your quality of life and the options available that are acceptable to you. Some people believe taking meds is giving up.

Its just another way of pooping without disease. Healing and adjustment would take a while.....

Giving up? It's usually the influence of others that pretty much enforces that thought.

Do what's best for you....

q

I'm in a similar position--Humira + prednisone had me close-ish to remission, but once I started dropping the pred I started regressing. I'm setting up appointments with surgeons because I want my life back and I am sick of all the meds. I am becoming more at peace with the idea of surgery and what life might look like afterwards. Take some time to consider the good/bad.

I really don't feel like surgery is giving up--I think you have to be really brave and/or really desperate to choose surgery. Part of me would rather be brave now and choose it before I run out of options and feel forced.

Going for 2nd consultation on May 1st.Ive had UC for 32 years,flares here and there,few put me in hospital.My Dr thinks i need Humira or Remi but i don't want to go on them so surgery is an option.At 58 yo its time to give it some good thought.Everything working well now.Last week had the usual Big D.Doing cortenemas just about every night to keep rectum from bleeding.Disease is progressing slowly where i need to stay on top of things so surgery might be the way to go while I'm pretty healthy-good luck

I would agree with most of the replies here; they are very honest, informed, and well articulated. It is, I believe, in some small way, giving up; but there's nothing wrong with giving up when you're talking about failed treatments. I am 9 days post-op from my takedown surgery (I had it done at Mount Sinai in New York in three steps) my surgeon felt taking the extra step instead of going to two-step route would be worth it so they could further study the diseased colon after taking it out (my final diagnosis was Indeterminite colitis).

I battled the disease for the past five years and it had a profoundly negative effect on my life. Surgery was the last thing I ever wanted to do so I went through almost all of the Mesalimine options, Prednisone, Uceris, 6MP, Humira, and finally Remicade. I even tried to treat it 'naturally' for about an eight month period (gluten free diet, high dose probiotics including VSL#3, Boswellia, GPLC, Andrographis, Isatis Cooling, Tumeric, Pomegranate and Grapeseed extracts, and more). Nothing worked, I endured a couple of trips to the emergency room for both dehydration and kidney stones, all sorts of negative side effects and nausea from the drugs, basically felt sick every day of my life and just couldn't take it anymore so I finally opted for surgery.

So did I give up? Yes, I guess I could say I did, but what I gave up was everything negative and traded it in for something that I hope will be positive. I can't say it's been easy - having a bag hanging off your abdomen is tough to wrap your mind around, and there were minor complications at times such as wafer leaks and burning skin etc. - but feeling 100 times better days after my first surgery made it all worth it. It was like night and day as opposed to the day before I went into surgery. I hadn't felt that good in five years. As mentioned I had a hard time mentally with the bag but for a few moments I actually thought I might keep it because I felt so much better and had read some not so great stories about the J pouch.

But I decided to take my chances and go for it; and although the first nine days have not been fun I continue to have a positive outlook and hope that six months from now I can post another success story. I don't regret my decision one bit as I truly feel this will give me my life back. My advice to anyone thinking about having the surgery is simple - there is no right or wrong decision and that decision is solely yours, no one else's; give it a lot of thought - ask yourself if you can accept going on living like you currently are (it's OK if you answer yes to that), if not, do your own research so as to make an informed decision and choose an experienced surgeon. And most importantly do your best to maintain a positive outlook! The support and inspiration of everyone on these forums has truly been great; don't hesitate to reach out to people here - everyone is here to try to help each other! I wish you well in your decision making process and no matter what you decide I wish you happiness and health.

Let's just say I continue to try to be as vegan as I can be . But I don't want to hijack this thread with that discussion, that would best be had in a completely different thread if need be.

Drosselscott who did your surgery and how did you like Mt SINAI?? Thinking Mt Sinai or Cornell for mine??

Just be prepared for a long recovery; I had surgery 16 years ago, best decision I made. But it took a full year to get rid of the fatigue and joint pain caused by prednisone use. You will feel better gut wise, but some of the other aspects of the disease might take longer to recover.

Sue