I'm not sure about the 1 steps. My surgeon really would love to do them, but before my surgeries he did one on a little girl and it failed so he didn't take the risk with me. However, I am 17 and totally understand wanting to do the surgeries quickly and easily and get on with life. The three step surgery took place over a course of 11 weeks. That may seem like a long time but I would have a surgery, recover, have a couple good weeks and then do another surgery. It went pretty darn quick!

Since you are healthy I would ask my surgeon about the 1 step, but do know that they often can go bad and then that stinks because you would have to have more surgeries to fix it. I would also ask about a two step process where they first remove the colon and construct the jpouch and then the second step where they would do the "takedown." Separating the surgeries out can be important to let everything heal.

If you search "One step surgeries" on this forum you can read past threads about them. 

Surgery will change things but I think in the end it could definitely be a wise decision. It's so nice not to have a diseased colon and take a bunch of meds!

Hi, thanks so much for the reply! I know one steps can be risky but I've found one of the best hospitals/doctors in the UK so I guess I'll have to talk to them about their successes with it, I'm always kind of worried they might be lying though. 11 weeks is pretty good for 3 surgeries. I'm just worried about how it'll hold up. I'm happy that your experience has been good! And yeah I think sometimes searching for stuff on here, although helpful, can freak me out because it seems all negative. I always think that the people who have successfully had surgery probably wouldn't post about it online anyway. I've never thought about posting on a breast reduction forum because I've had no issues and just went about my life, so why would someone with a successful j pouch post about it? I  try to stay away from googling stuff for the sake of my sanity. But thanks again!

My one-step went okay. It doesn't save in-hospital time (on average) compared with a two-step - I was in the hospital for 10 days that felt like forever. The recovery after that was uneventful, though. I returned to work in six weeks, and could have gone back sooner. 

Some surgeons just won't do them. Others are open to negotiation. I lived 1,000 miles from my surgery, so there were very good reasons to keep the number of trips down.

10 days? That's great for me. So glad it went well during recovery. I hope I can get it done. Thanks for your answers. How has it been since then?

You may well be a good candidate for a 1-step. Your overall health and being in remission does mean less risk of complications.

That said, I am not sure you even need a colectomy, at least not yet. A few flares that respond well to treatment does not mean you need a colectomy. Have you been told you have dysplasia or other risk factors that you have not mentioned here (such as pancolitis that is long standing)? However, I don't think you are old enough to have had long standing pancolitis.

My point is that colectomy is not a first line treatment, but more of a last resort. Still, if you know you need a colectomy, then being healthy is best.

Jan

Love your signature, I needed that. And nope I don't I just hate the thought of using azathioprine for so long (it's been 6 years already) and the possible side effects. I know the chance of getting fatal cancer is really, really, really small but I'm an anxious person. I'd rather not have that risk at all.

Well, if your purpose in getting a colectomy is chiefly to eliminate medications, or just a particular medication with a rare, lethal side effect, I suggest you take a step back. You asked how it's been, and the answer for me is "great, with medications." I had few years with just some Lomotil, but now I need to be on Cipro and Flagyl every day, plus medications for the various other non-GI conditions that have cropped up as I morph into a geezer.

To put it in perspective, the risk of colon cancer just from having UC for a long time is much, much higher than the risk of cancer from azathioprine.

Mmm I know, but I have bad anxiety about these things. When I started azathioprine the side effects weren't explained to me and I just found out recently + a bad anxiety spell = panic.

I had a similar feeling years ago  (in the 1990s) when I was put on methotrexate, which I self-injected. I couldn't stop thinking about it as a cancer medication, and I feared and hated it. Good luck!

I think USA surgery is big money due to insurance etc, so the surgeons/hospitals are often hyped.  That is less of an issue in UK due to the NHS (our service is often considerably slower though).  Chances are on the NHS the standard will be good, they specialise and are overworked (meaning they get a LOT of practice lol).  My Surgeon did 4 minor bowel ops, a reversal and 2 J-pouch on the day I was in!! (7 surgeries in total...and I was there in the operating room for 5 hours)

The closest we have to a  Mayo or Cleveland clinic is probably St Marks in  London (I see you live in London!) That is considered the primo place for a bowel op in the UK.   I know there is a guy in Portsmouth who is reportedly very experienced, and a guy in Plymouth (who did my 2 step), that was sold to me as probably top 2 or 3 in the uk (to be fair he did a great job....so far).

You (like me) are probably the kind of person that 1 step is intended for, you have a requirement for the op, no apparent complications and are fit and healthy so should cope well with the rehab.  That said, my surgeon offered me the 1 step, but said that a 2 step would be best as the healing time gives a better outcome (in his opinion).  I went for the 2 step. 

hth

Well, guess what? Having a colectomy is no guarantee that you won't get cancer. While rare, pouch or rectal cuff cancer can occur. Plus, a number of us need the very same meds you are wanting to avoid. As a matter of fact, I am currently on azathioprine and Remicade for chronic pouchitis.

Bottom line, there is no perfect solution. If you are an anxious person, that does not come out with your colon. There is always something to be anxious about. I am not trying to be flippant, just pointing out that having a colectomy is not a good way to deal with anxiety.

Jan

Thank you for all this! It's kind of hard to gauge the process when many users here are in a totally different system. I will keep all of this in mind

What said about the azathioprine is really interesting, and also sucks. I didn't know rectal cuff and pouch cancer exsisted until just now...that's not good at all. I'm just in a hard place at the moment.

Jan is correct about rectal cuff cancers, of course, but they really are quite rare. Having a colectomy to avoid colon cancer (from UC) is perfectly sensible, it's just not an ironclad guarantee. 

That's also interesting. Idk what my chances are of colon cancer because my UC is controlled but the thought of not having to take meds is just...great 

Your cancer risk associated with UC is largely dependent on the number of years since diagnosis (there is a gradual increase after about 10 years), and the extent of the disease. Pancolitis (involving the entire colon) has the highest risk. Left sided colitis has a risk similar to the general population. Sadly, being in remission does not do much to alter cancer risk. However, it is easier to see precancerous lesions if you do not have active disease.

So, the best thing to do is to talk with your GI about your specific lifetime risks. Then you can put it into perspective. Then, if colectomy is something you may need in the future, you can ready yourself for it. Only about a third of those with UC need a colectomy in their lifetime.

Jan

I had my surgery due to severe pancolitis with dysplasia.  I also had my hysterectomy due to dysplasia as well and other factors.  My surgeon will be doing scopes and biopsies every year just to keep an eye on things.  As I understand, rectal cancer does not happen often, however I feel better knowing my doctor is on top of it.