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Surgery. How early is too early?

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Ulcerative Colitis
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Posted 4/19/2016 2:09 AM (GMT 0)
I have read many pros and cons for surgery on this site. And I know my UC isn't NEARLY as bad as most, but I'm tired of worrying. I constantly worry about when my next flare will happen. I'm scared my medicine isn't working anymore so I'm calling in the morning to see if I can see my GI this week. All I think about is UC and how it restricts my life. I'm tired of it and I want to have a worry free life of a college student...even if it costs me my colon.
So here's my question...how early is too early for surgery? I want my quality of life back. Ever since my dx I've been so depressed.
Posted 4/19/2016 2:31 AM (GMT 0)
At a very low point I asked the same question.
I got a lot of excellent feedback.

https://www.healingwell.com/community/default.aspx?f=38&m=3281363

https://www.healingwell.com/community/default.aspx?f=33&m=3281367

And things have been much better.
Low point right now, but still SO much better!
Posted 4/19/2016 3:11 AM (GMT 0)
If you're maintaining well on the lowest tier of meds, surgery is a big jump. I tried everything before opting for surgery. In my opinion, life without a colon can be good, but it's never going to be exactly as it was with a healthy colon.

It's true that I don't have huge concerns about the bathroom, nor do I have that HUGE stress about the future, but I do have to go to the bathroom much more often than a person with a working colon. That in itself is not ideal. The surgery for this is really a tough one (more like a tough 2 or 3). If it were something simple, everyone would do it. It's not just difficult, technically challenging, expensive, long, time consuming, it also leaves you functioning differently than you were before. To make matters even more scary, there is no way to know how your body will react. Will you be like me and have easy surgeries without any issues, or will you end up with a stricture or a poorly functioning pouch? you really don't know. Even if you have the best outcome, you will likely go 4-8x a day. I usually empty when I pee, so it's not a huge inconvenience, but would I rather not? Sure! I'd love to have a working colon, but I was never getting that and I faced that reality when I ran through every single available treatment very quickly.

There is also the chance of developing pouchitis in the future, so that worry can remain very real. It's not a large percentage who develop it, but it can be chronic.

In retrospect, in my case, I should have had the surgery WAY back when I was diagnosed. Wasting all those years trying to control this illness, was a loss of time. If I had known my colon was headed to removal, I would have done it, and lived my life without stress and worry all those years. Surgery has opened doors for me that wouldn't have been open. I haven't planned ahead for anything in years - I finally can. I was scared if i said I would be somewhere in a month, or two, or next year even, I wouldn't be able to come through because my UC was so erratic. Now I feel comfortable making plans. It's high risk and high reward. Though the statistic has been presented that over 90% of people are happy with their post surgery function.
Posted 4/19/2016 3:23 AM (GMT 0)
now is too early - and i don't think there is a responsible doc or surgeon that would think otherwise -

without question, this disease sucks and screws with our emotions - how could it not !

does your GI know of your depression ? if not, you really should discuss it with him/her -

have you tried any relaxation therapy ? are you getting plenty of sleep, exercise, and good food ?

hang in there - it will get better !
Posted 4/19/2016 3:25 AM (GMT 0)
Thank you both for answering so quickly!
Notsosicklygirl, if I had surgery, I don't think I would go jpouch solely for the risk of pouchitis. I think I would just have the permanent ostomy. I'm okay with it. The idea of surgery/being colonless (for me) is WAY BETTER than the worry, stress, and pain that I face now. I'm in nursing school, so I started thinking that another benefit of an ostomy would be a really cool teaching object. I've even thought about being an ostomy nurse to help people who have to make the decision for surgery. I'm going to talk to my doctor about it the next time I visit!
Posted 4/19/2016 3:53 AM (GMT 0)
The primary issue seems to be anxiety and not colitis. I would get counseling for the anxiety before going further with surgery. A responsible surgeon would require it, but many won't do the social history to discover your anxiety. If I were a hospital admin, I would not allow a nurse or employee teaching with their own ostomy. I hope you put a lot more thought into this.
Posted 4/19/2016 11:40 AM (GMT 0)
Surgery is recommended for those who've failed all other medications, and you're only on the first class of medications (anti-inflammatory Dezicol). So, yes it's way to early to consider surgery. Keeping your large intestine is always preferable to surgery when your uc can be managed with medications. Surgery wouldn't keep all anxieties away, likely new ones would start: dehydration, blockages, foods can impact output/comfort, and other things are then possible even without a j-pouch (an end-ileo+appliance).

It does sound like health anxiety. We all suffer from such anxieties to a degree. If your anxieties have a strong negative impact on your life then I'd seek out an appropriate treatment counseling, therapy, even anti-anxiety medications would help. Some of us have sought this out and it helps. Living with chronic illness isn't easy, there's always uncertainty, there's depression and anxieties, and none of those are treated by our gastroenterologist.

If you're still experiencing uc symptoms then have them treated by your gastroenterologist to improve your quality of life. That can help anxieties if you're less likely to have an accident, for example.
Posted 4/19/2016 11:58 AM (GMT 0)
I honestly don't think there is a right or wrong time to decide on surgery, it comes down to your quality of life which is what caused me to make my decision. I'm with NSSG, if I knew my colon was headed to removal and knowing how positive my outcome has been so far, I would have done this years ago and saved myself countless doctor visits, medications, hospital visits, stress and lost time. You also have to consider the cancer risks that are present with UC as well. If your UC is really effecting your life on a daily basis, I would consider it. It's not an easy road and I'm a perfect example of that. I went through A LOT since my initial surgery last October but here I am two months after my takedown and enjoying life like I was not able to prior to surgery with my UC. In this UC forum, find and read my post "Decision Made" for my story of what I've been through. Some people just don't want to deal with living on medications to control or try to control their UC. I'm currently living med free for the first time in 16 years. Even if your not sure about a J Pouch, you can do the surgery in 3 steps, you'll have your ostomy after the first step and you'll live a few months with that before step two and you can see if it's something you're ok with. I prefer my pouch over my ostomy any day. You do have to consider the issues that come along with having an ostomy. Possible skin issues, blockages, buying supplies, possible bag leaks etc. Talk to your GI, find two or three GOOD surgeons that specialize in the J Pouch procedure and get consultations, ask lots of questions and make your decision based on the collective information given to you.
Posted 4/19/2016 12:07 PM (GMT 0)
No right or wrong answer to your question. Some people get fed up a lot sooner than others. It's a totally personal, individual decision and no one should say it's too early or not too early for you.

I personally exhausted all my options first, then I had surgery.
Posted 4/19/2016 3:52 PM (GMT 0)

Kat2017 said...
Thank you both for answering so quickly!
Notsosicklygirl, if I had surgery, I don't think I would go jpouch solely for the risk of pouchitis. I think I would just have the permanent ostomy. I'm okay with it. The idea of surgery/being colonless (for me) is WAY BETTER than the worry, stress, and pain that I face now. I'm in nursing school, so I started thinking that another benefit of an ostomy would be a really cool teaching object. I've even thought about being an ostomy nurse to help people who have to make the decision for surgery. I'm going to talk to my doctor about it the next time I visit!

I admire your commitment tongue

I can tell you, blksteeda is right, there are other anxieties with having an ostomy. When I had an ostomy, I would get nervous about it filling up, worried about leaks (though I never really had any), worried about the bag filling with gas, worried about having a full bag in public, worried about what to wear to hide the bag, worried about my skin under the wafer itching, worried about emptying in public bathrooms, worried about the odor (it doesn't smell like what you're used to)... I worried about having to change in a public restroom. You're supposed to carry a kit in case of a leak. While it didn't happen to me, I could see it wouldn't be easy. After a few weeks, you're really good at managing it, but I still dreaded the thought of a leak in public and trying to get cleaned up in a little stall... I would have to get up in the night to empty - when I get up at night now, I don't have to turn on lights, with the ostomy, I would have to turn everything on so I could see what i was doing - couldn't get back to sleep. If you're ever without insurance, the supplies are expensive! Then a lot of the time, you're only allowed to get a certain # of items in a month, so you can be running low and they will not want to cover. Plus, there is a prescription from your doctor for the supplies, sometimes you're waiting around to get an item because your doctor hasn't given approval.

As for being an ostomy nurse, it would be really great to have a nurse with an ostomy. Mine didn't have one, but my goodness, she was amazing. The ostomy nurses I dealt with were really passionate about working with people and teaching them. You don't have to have an ostomy to help people. A lot of what these nurses do is provide support. I remember spilling all my fears to my nurse the day before surgery. It's a really challenging thing to go through. I wouldn't rush into it. I am thankful I did it, I am thankful to be done with doctors appointments and medications, but if the medications worked for me, I would have gladly kept my colon. Take your time and see how you feel. If you're 100% sure you want to be done with UC, consult with some surgeons.

Oh gosh, I forgot to mention my #1 fear with the ileo, NOISES. You can be in a silent room and have it sputter out some stuff and it sounds like you're farting. Granted, it gets less problematic over time. The longer you have it, the more your body adapts, but I only had mine for 4 months and it was noisy. It was embarrassing at times. I would put my hand over to muffle sound, but you really don't have much control.
Posted 4/19/2016 4:30 PM (GMT 0)
also with the pouchitis, there is a test to see if you're at higher risk, my number was on the high side, in the 50's I believe. 19 and lower is what was considered normal. That didn't stop me from making my decision. I've also heard that people with chronic pouchitis say it's nothing compared to having UC, some have it completely under control. There's a lot of "what if's" with this procedure, same with medication...Remicade has a cancer risk associated with it. Some may say "what if I get cancer from it" and wont' take the medication, others may take the risk/reward approach. Don't let pouchitis dictate your decision, you may never get it. Talk to your GI and any surgeons you may see and get appropriate information on it, treatments in case it happens etc.
Posted 4/19/2016 4:43 PM (GMT 0)
geez, i think you guys are jumping the knife a bit !

ya, the OP did ask about surgery, but yikes, it was just dx'd 3 months ago - and from the sound of it, the current meds seem to be doing their job -

nothing wrong with a little info, but maybe a better approach would be to address the situation that's happening TODAY -

and it's not like the OP can just decide to have their colon removed just because - there do have to be other folks involved - to say it's up to the patient is bordering on ridiculous -
Posted 4/19/2016 7:57 PM (GMT 0)
Let's be nice now, I don't want to see this devolve into a brawl.

For a new patient it's good to be knowledgeable about what surgery is and when it's appropriate. In the OP's case it is not appropriate to have surgery several months in on a new diagnosis after only trying the first line of treatment. Surgery is appropriate for nonresponders to all available uc treatments: anti-inflammatory medications (first line treatment), immunomodulators (second line treatment), and biologics (third line treatment). Surgery is in fact, the fourth line treatment for uc.
Posted 4/19/2016 7:58 PM (GMT 0)
All this is totally up to the patient and their doctor(s). Period.

And you do not need to be a non responder to meds to opt for surgery.
Posted 4/19/2016 8:26 PM (GMT 0)
Locked due to rule 3 violation flamming. Offending posts deleted.
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