Considering jpouch surgery..

 

I have been lurking around the forum reading all the helpful information posted here for a while. Finally, got around to creating my profile and need some advice. I was diagnosed with in May, 2010 and have been in a constant flare since then. I can't remember being in remission or relatively symptom free for more than a week or ten days during this entire time. I have tried pretty much all the drugs and therapies out there...remicade, enemas, 6MP, Aza, prednisone, homeopathy, ayurveda, yoga, accupuncture. Currently, I am in a drug study for Vedoluzimab. Nothing really seems to help much..On a good day I go to the bathroom between 4-6 times a day with urgency and end up spending 30-40 mins on the throne. And, those visits are not pleasant at all. Usually, accompanied with cramps, blood and incontinence. Then, there are the bad days. Recently, the bad days seem to be outnumbering the good ones.

So, my question is do you believe my symptoms are bad enough to consider getting a j-pouch? I feel I am mentally prepared to get surgery but I wonder if I am hurrying into surgery. How bad were your symptoms before you decided to get surgery? And, do you feel life after a j-pouch is better? I hate the unpredictable nature of UC. It seems everytime I have plans, UC acts up and I need to cancel them!!!!

UCwarrior,

Welcome to the forum.

Love you forum name.

But I am sorry you have to be here, with UC. That sucks.

I am not one who will push surgery, IMO it should be a last resort or in a case where your life is at stake, but I well understand your suffering... 30-40 times on  the toilet a day? And that's a good day? There are some who will suggest surgery for the quality of life you currently don't have.

I can tell you that when my doc told me it was either remicade or surgery - I said NO to both, and had to find my own way.

I would suggest, since you've tried everything else, you give a chance to: diet modification, certain supplements, and LDN - low dose naltrexone.

What do you think?

I'm just suggesting you explore every option beforehand.

There are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

 

 

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Read this:

It's Amy Brenneman, the actor on Judging Amy, she had U.C.

online.prevention.com/amy-brenneman/list/1.shtml

a little extract:

Surgery of Last Resort

Why did you wait five years before trying surgery?

I was being New Agey about it--like, surgery, grrr. With all our understanding of the mind/body connection, there's a point at which you can use that idea to abuse yourself: If I could only find the right technique or I'm too stressed. You're blaming the victim, who is you. Years ago, my doctor told me there was a surgical solution, but I thought, I will never do that, you know? But surgery ended up being what healed me. I'm so grateful to Western medicine. Now I eat basically everything

I have a j pouch and love it. It all boils down to quality if life. If you feel like your quality of life is poor and you have tried all you are willing to try, then it could be your time to consider surgery. But I also believe one knows when it's time.

I had zero quality of life and was having accidents daily. I was very sick. I couldn't go another day living with UC ... It was sucking the life out of me. That was 2.5 years ago when I had j pouch surgery and life has be awesome ever since. Thank God for this procedure.

It's not an easy surgery but once you get through it, your done....that's it... No more UC and you can get on with your life. Please feel free to ask me any specific questions you may have about the j pouch procedure. :)

If you feel like you are ready, you are ready, just like someone up there already said.
I have a bag, i didn't choose a jpouch. But that was just what I wanted to do. I wish I had done it the day I got sick. I have my life back and do whatever, whenever.
Good luck.

What somedude said is accurate - I only had UC for about 1.5 years before getting surgery. I was actually diagnosed somewhat much after you (July 2011) and had the first stage of surgery on August 30, 2012. So I was basically only diagnosed for a year. I go into great detail about my surgery decision on my blog, but it boiled down to a few things...

1. I tried all the solutions I was comfortable trying (I didn't go too far into alternative therapy land, but the only thing holding me together was 40 megs of Prednisone...I didn't want to be on it any longer as it was already causing horrible side effects.)
2. My quality of life sucked. I was soooo sick. Not just digestively, but in general. My mom was making weekend trips to my place (6 hours round trip) to help me take care of day to day things like vacuuming. I don't have kids and I only work part time but still couldn't keep my house going. I needed tons of sleep and rest.
3. Going out and doing anything was scary - I was having accidents even at a full dose of Remicade and 30 megs of prednisone
4. I didn't think any drugs would give me sustained remission and those that might give me sustained remission had horrible potential side effects. I didn't try Humira, but even if it had worked, would it still work in 5 years and did I really want to do that to myself forever?
5. My UC was spreading - it went from like 6 cm to 30 cm in the course of year despite being on almost constant prednisone and lots and lots of other drugs.
6. My GI actually recommended surgery - she had only done that for two UC patients in 10 years (myself included).
7. Even though I preferred a jpouch, I thought that even having an ileostomy would give me a better quality of life.

I decided to tackle my UC head-on as I thought surgery was inevitable for me. I didn't want my health to decline any more. I'm still on Stage 1 of 3 surgery stages, so I've only had most of my colon removed and now have an end ileostomy. Even though I'm not done yet, I have to say that I feel soooo much better. I can actually go out and do things again. I'm having three surgeries instead of the standard two because I had been on Prednisone for so long. It effects healing. That's just my surgeon's SOP.

It won't hurt you to go talk to a surgeon now just in case surgery becomes more urgent. Just because you visit does not mean you have to schedule surgery. I took several months to come to the conclusion that I should consult with my surgeon and had my appointment booked two months out. Then I got really bad and decided I was done. I was on the phone setting the date for my surgery before having my consult, but since I was already on the consult schedule they were fine putting me on the surgery schedule for a date after my consult. If you decide to go the jpouch route, make sure you get a good/experience jpouch surgeon.

This guy had a list of questions somewhere on his blog. myulcerativecolitisstory.blogspot.com

UCWarrior2010 said...
Thanks for the input, everyone!! I really appreciate it. On most days I feel I am ready for surgery. But, if I happen to be having a good day I start questioning my decision. I guess my expectations about what a normal day should be are so low since I got diagnosed with UC that I am easily satisfied if I only spend 3 hours in a day in the bathroom!!

I have a surgery consult scheduled for next Friday. I hope that will help me get more clarity!

InSoFla - you have a very impressive regimen and I am glad that it worked for you. I was on SCD for a year and I was really strict about following it to the T. It improved my symptoms to some extent but never put me into remission. Now I wonder if I have the will power to try something like that again!

Somedude - We will be rolling without colons holding hands!! Are you considering surgery too? And, thanks for that article!

Bananagirl - I hope humira is your magic drug! I had a lot of hopes from Vedoluzimab, but I don't think it is working for me.

ByeByeUC - I couldn't agree more. It's about quality of life. Looking back, I feel I have lost the past 2 years of my life. If it wasn't for the wonderfully supportive people that I am surrounded with, I wonder how I would have got by these two years. I can't even count how many plans and trips I have had to cancel at the very last minute.
I am meeting with a surgeon for a consult next Friday. What kind of questions should I ask him? Any wisdom that you can share will be much appreciated!

Summerstorm - How did you zero in on a surgeon and what questions did you ask him/her before the surgery?

Thanks again all of you!!!!

You will want to ask the surgeon how many steps do they plan on doing the surgery in. Ask if you they do it laparoscopic or open. I was fortunate that my surgeon was an ace at doing the procedure laparoscopically. It reduces your chances of scar tissue building up. It's the excess scar tissue that causes blockages. Ask about your recovery time and how many weeks in between surgeries you will have to wait. You can inquire about diet post op too. Oh and ask how many j pouch procedures he or she has done and how happy his/her patients are with their outcome. I'm sureim forgetting something but that is a good start! Good luck!

Thank you all for your sharing your experiences! They really help me put my symptoms in perspective and make me realize that I am not being unreasonable by not being happy with my current quality of life! Sometimes I wondered if I am just expecting too much and I should be happy that my symptoms are not worse!!!

I have set up a consult with a surgeon for next Friday. Hopefully, that will help me get some more clarity and make a firm decision.

ActiveUCer - Actually, I read your blog just this past week. And, thanks for suggesting that other blog. I found the entry with a list of questions. I am so glad that people like you blog about your experiences. Your blog (and of others like you) are of great help to many!!

ByeByeUC and Summerstom - Thanks for your advice..I am noting down all the questions and will make sure that I ask the surgeon all these questions and walk away with tons of notes.