Considering colectomy

It just had 1.5 years of remission and answered to no one. I had my life back. The freedom and the possibilities were endless.

Now I'm in another serious flare. I only get worse by day.

I am so disappointed, so devastated that my life is being robbed from me again, that I am considering surgery. I can't go through this extended trauma again. It is too hard on me.

I just don't want the rosie picture that surgeons paint. I want to hear about the real deal.

My questions:
- how much support do you need once you leave the hospital after the first surgery? can you make it work on your own or do you need family around? (I have no human support where I live, thanks to years of being sick.)
- from the first surgery to take down is 3 surgeries, over how much time?
- what is the rate of complications? what is the rate of pouchitis? if my UC has been complicated and unremitting, does that make the chance higher that I'll get pouchitis or pouch failure?
- what is the belly scar like from all the surgeries?
- how soon after the first surgery will I start feeling better?

> from the first surgery to take down is 3 surgeries, over how much time?

1.) It varies based on patient health and body weight. If you are currently on prednisone, biologics, or thiopurines then the healing is slowed down and it takes a lot longer, and less time if you are not on them. I'd say 6-8 months is about average to have all surgery steps done, but it is a good discussion to have with a colorectal surgeon at a no-obligation surgery consult where they can dial it in based on your exact health and case history.

Some have had the 1st surgery and do not desire to continue onward for any additional surgeries. Why? Perfectly happy with their end-ileo and appliance, and not worried about a permanent appliance.

> what is the belly scar like from all the surgeries?

2.) Generally, you are talking multiple inch or less scars on your lower abdomen that fade over time. You can wear a skimpy swim suit, and be intimate with others and they'd be non-the-wiser that you ever had a colorectal surgery.

Go to the URL below, and scroll down to the "healing scars" section, Ronni has photos of how it looks 6-months after the surgeries.
https://ronnilee-fightingforit.blogspot.com/2013/04/the-adaptation-period.html

> how soon after the first surgery will I start feeling better?

3.) You'll feel better as soon as you wake up from the 1st surgery. As your diseased colon is gone, along with the side effects that means. There will be some surgery pains, as you come down on the anti-pain meds, but you must muscle that brief period.

>what is the rate of complications? what is the rate of pouchitis?

4.) First source of some odds for you. Cuff abscess 11.6%, J-pouch leak 2.3%, intra-abdominal abscess 1.1%, stricture 4.8%, fistula 1.6%, small bowel obstruction 5.5%, pouchitis 25.0%, eventual diagnosis of Crohns' disease 0.7%, redo IPAA 0.9%, and eventual pouch loss 1.2%.
Source: https://jamanetwork.com/journals/jamasurgery/fullarticle/212599

A second source of odds on pouchitis. The most common inflammatory complication after IPAA is pouchitis, which will have occurred at least once in up to 70% of patients within 20 years of surgery. In our practice, pouchitis rates are 9.5% at 1 year, 23% at 3 years, 32% at 5 years, and 44% at 10 years. The majority of these patients can be managed medically with antibiotics and have a relatively benign course. A small percentage of patients with severe, recurrent pouchitis will require long-term therapy and ultimately may come to pouch excision.

CD of the pouch will occur in up to 3% of patients initially thought to have UC and is universally associated with worse outcomes when compared to UC patients.

https://academic.oup.com/ibdjournal/article/17/7/1610/4633598

Considering your level of stress and the severity of disease, I think you're smart to look at options. What you should do is go on a consultation with a few surgeons and see what they say. Why do you think you would need 3 steps? I had 3 personally, but a lot of people get it done in two. I feel like my whole situation went fairly quickly so far as time between. I was able to live pretty well with my end ileo for 12 weeks, but the loop for 8 weeks was a challenge.

After takedown, I was back to myself to some extent. I wasn't perfect, but I didn't let illness stop me from doing things like I had been for years prior while suffering with UC. I went to a party a few weeks after step 3, had a couple drinks, ate what i wanted. That was the first time I was able to enjoy myself at an event in years. Every other event i've been to I spent looking for toilets, stressed about the potential for accidents and I didn't eat.

I was pretty self-sufficient after the steps, but most people aren't. I took a week off. I had a home health nurse who came over and took my vitals and helped me change the bag. She came 3x, then I was fine on my own. I only really needed her 2x. You can't lift more than a few pounds for the first few weeks so you do need help with simple things, like laundry. I don't do well with pain meds so I was off then quickly and I was able to drive myself to follow ups.

I didn't feel great after step one. Some people say they were like "wow, I am healthy now" or "I felt immediately like I was free of illness". None of that was true for me. I am still extremely tired all the time. Must be something else in addition to UC that's been going on forever. I had the test pANCA test results show that I wasn't a great candidate, and that I was likely to get pouchitis, and I am one of the ones who hasn't had it. I feel very lucky for that. I also had a mucusectomy to scrape the cuff and rectal area, so I am sure that helps. I am here for you if you have questions or if you want to chat. Just find a surgeon, even if they aren't the one you want to go to and have a consult. That will give you tons of answers. after I met "mr right", It sped up the process a lot more. I wasn't 100% sure until I felt comfortable with the surgeon - then I moved as quick as possible.

Scars vary. Some of the robotic-assisted have a few smaller scars, but everyone's going to have that 1 inch one next to their belly button where the stoma was. I also have a pelvic where they took the colon from.

Expect 3-surgeries. How underweight are you? In some instances where we're really underweight, they do have to fatten us up 1st, with a PICC line before considering a colorectal surgery.

I would definitely get a consult with a surgeon and get their opinion. They could answer all of these questions. I also worry about being alone if I ever need surgery.