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Ulcerative Colitis
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Posted 8/10/2013 11:01 AM (GMT 0)
Hello all, I've written a few times in the past and appreciate all your assistance. At this point, although I never never thought I would, I'm actually considering surgery. I'm terrified with 2.5 year old twins and a husband who works 24/7, although he and the rest of my family are the most wonderful and supportive. As I would presume with anyone, the thought of surgery is very very scary, and the days and weeks after seem worse. I feel that I've tried everything after suffering for 2 years, I just don't know where to go from here. How do I know that life will be better after surgery?
Posted 8/10/2013 11:06 AM (GMT 0)
I don't think life will be better, but you will be!
Posted 8/10/2013 11:38 AM (GMT 0)
My quality of life is certainly better after having surgery. Best decision I made....and a tough one! I had the two step j pouch procedure. It was rough but soooo worth the end result. Do your research and go for a surgery consult with a highly skilled colorectal surgeon to get the facts and info. It doesn't mean you have to commit right there on the spot. Only you can make the decision and know when it's time. I woke up one morning and I just knew it was time for surgery. I couldn't take another minute of living with UC.

My kids were young at the time of my surgery too and my hubby owns his own business and works all the time so I was worried about that as well. But it with the help of family and friends, it all worked out great. Please let me know if you have any specific questions. Good luck!
Posted 8/10/2013 11:42 AM (GMT 0)
Mama,

I respect your decision for surgery.

Wouldn't you want to try LDN in case it works for you?

Posted 8/10/2013 12:00 PM (GMT 0)
In so Fla, emailed you.
Bye bye UC, thank you, you're giving me a bit of hope! At this point I feel all options are crap...pun intended.
Posted 8/10/2013 2:27 PM (GMT 0)
Almost everyone who has had surgery kicks themselves for not having done it sooner.
Posted 8/10/2013 2:55 PM (GMT 0)
Yep, surgery 12 years ago for me and I have never regretted it. It's difficult decision to make and also remember, although recovery is hard, at least one recovers healthy once the UC is gone.

Sue
Posted 8/10/2013 3:25 PM (GMT 0)
I just had my takedown (final surgery of three, touchwood) and I gotta say even in the very early days of recovery it's night and day compared to when I was struggling with my UC flare. Nine days post-op I went out on a date, dinner and a movie, with my boyfriend. I had to go to the bathroom once during dinner and I was a little uncomfortable at times, but I *never* could have done any of those things while I was struggling with UC. The constant pain is gone. The incontinence is GONE. The fear of lifelong side effects from steroids and other toxic meds is over.

Surgery was hard -- the hardest thing I've done in my life, hands down. But I'm already reaping the benefits.

Best of luck.
Posted 8/10/2013 3:59 PM (GMT 0)
Wow Pluot, that's amazing! Good for you :) I feel conflicted because I have the occasional tolerable day where I only go 6 or so times, usually on the weekends when my stress is decreased. Weekdays are greater than 10 times, high urgency, cramps and tons of puss, sorry to be gross. Just feel like I can't take my kids to the zoo, water park, etc. Very difficult and scary decision. I've had scary abdominal surgery before and probably have PTSD about it. My husband is most concerned because of the increase of potential colon cancer with such high inflammation.
Posted 8/10/2013 4:11 PM (GMT 0)
I don't think occasional tolerable days fit into a quality of life when you have a commitment to your children. It might be different if they were grown and had lives of their own away from home.

But that's not the case...

How I would do it...and that would be long before the meds you've been on....I'd prefer to make the decision rather than have my butt backed into the corner while never being able to get off the toilet.

There's amazing support from others who have had it done, and if you're supported by your family, then you're in the best emotional place possible.

here's the other thought...your loved ones want you to be happier and healthier...they too suffer too.

q
Posted 8/10/2013 9:07 PM (GMT 0)
You can't KNOW that life will be better after surgery. But you KNOW it's awful now, and take a leap of faith that you will be better, and that life will be better.
I can tell you for sure that my life is MUCH better. I was actually thinking just this week about it. We just went to the beach, my whole family. And we were talking about the previous times we had been as a family when I was sick. And i was thinking of how I had missed all that time with my son on the beach, while I was in the room sick. And remembering making the decision, in the kitchen of the beach house, that I was having surgery.
My son was almost 2 when I went in for surgery, my husband worked 3rd shift but I had a lot of help from my family so it all worked out well. Having a supportive family is going to make all the difference.
It's not going to be fun, it's going to hurt and it's going to take a long time to recover. BUT you won't have UC anymore and you will be able to play with your kids, take them to the beach, to the park, sit in car line without worrying. Lots of things you can't do now.
There might be problems, I had adhesions last year and needed another surgery. I still don't regret my original surgery. A few weeks out for another surgery was worth it for the 5 years I had had before that. I chose a bag, not a jpouch, because my son was so young and I didn't feel like two surgeries was something I could do anytime soon.
I'm still happy with my choice, 6 years later. I'm grateful everyday.
good luck!
Posted 8/10/2013 9:08 PM (GMT 0)
I'm a mom too, so I know how hard this is. I couldn't do anything in with my kids - I pooped my pants on the way to a baseball game once, often had to return early from family bike rides or other outings, and my poor kids knew every bathroom in every store in the area! I had no quality of life, and spent hours every day in the bathroom, missing everything fun in my kids lives due to repeated hospitalizations - no medications worked for me. Then I made the decision for surgery. I am 2 weeks out from takedown (step 3 for me) and it is the best thing I ever did. I am enjoying life again. It's not been an easy path - it's a tough surgery. But between steps 2 and 3, I went to the beach and spent full days playing in the sand and water with my kids - something I never could have done before. Go talk to a surgeon and find out why your options are at least. And feel free to ask us questions - most of us who have had surgery spend more time on the Ostomy forum, and I encourage you to come there and ask lots of questions!
Posted 8/11/2013 10:49 AM (GMT 0)
I will consult with a surgeon to learn my options, but does anybody think a lifestyle change may help? New diet, less stressful job, more exercise? Really want to leave no stone unturned, which is why I'm currently seeing a holistic doctor. I get that surgery may be my only option, but I fear because of my past abd surgeries it's going to be even worse.
Posted 8/11/2013 11:28 AM (GMT 0)
Mama,

I think you're doing the wise thing: consulting with a surgeon, and a holistic doctor.

IMO, lifestyle changes can make quite an important impact on symptoms - they cut the severity of my symptoms (except for the heavy bleeding) by

75% i.e. cramping, number of BM, pain, etc....

And then LDN took care of the rest.

By lifestyle change I mean:

1) diet modification as in gluten and dairy free, PALEO is my diet

2) eating anti-inflammatory foods

3) ensuring high levels of vitamin d3, mine are in the high 60's

4) adding slippery elm powder to coat the intestinal tract

5) adding l-glutamine amino acid powder for long term colonic repair

6) probiotics are KEY

7) adding some omega 3 product such as cod liver oil or krill oil

8) finding a way to handle stress

If any of this interests you,  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.

Posted 8/11/2013 5:43 PM (GMT 0)
"New diet, less stressful job, more exercise? Really want to leave no stone unturned, which is why I'm currently seeing a holistic doctor. "

if I were you, I would implement these changes whether you decide to have surgery or not -
Posted 8/11/2013 5:49 PM (GMT 0)
I agree, and I am. Praying that it works.
Posted 8/12/2013 2:13 AM (GMT 0)
A good diet and exercise are always an improvement on your life. Personally I didn't try that for UC, I was too sick to exercise and the few things I could eat were not very healthy. And i didn't want to do the diets where you give up lots of stuff. That's a personal thing though.
As for less stress, you've got 2 kids, there is no such thing as less stress, lol.
Posted 8/12/2013 7:00 PM (GMT 0)
I agree with all the others who have had surgery. It was a long road, but I have no regrets. I remember having to miss choir performances, pooping in the woods because I had to go "right now" on a 1/2 mile hike, etc. Everyone got tired of me being sick. They don't consider me sick anymore.

Please find a VERY competent surgeon, though. That can make all the difference. I think once you talk to him or her you will feel lots better. I was like others...I just knew it was time. I'm so glad that I didn't wait any longer. I can't imagine how much more I would have missed.

Good luck to you!
Posted 8/12/2013 11:07 PM (GMT 0)
How long do you give a new diet until you would see improvement? I am way too tired to exercise so need to focus on diet and vitamins while I try to put off surgery :(
Posted 8/12/2013 11:10 PM (GMT 0)
I was told six months to see if diet changes help . I didn't make it that long because I only got worse.
Posted 8/12/2013 11:31 PM (GMT 0)
Sometimes meds work, sometimes they don't. And frankly I'm on the edge with you about surgery. If my medication doesn't work I'll be going for it.

When it's affecting your life so much is usually the time you should say yes. It's the option in my back pocket. Not a cure, but an option.
Posted 8/12/2013 11:35 PM (GMT 0)
But is it a real cure? I'm so worried about the recoveries and my babies. This is the toughest decision.
Posted 8/12/2013 11:39 PM (GMT 0)
There is no cure. Only remission or surgery. You have to weigh the good and the bad. You can try all the alternative or off label medicine you can and it might or might not work. You can try all the diets listed on here, and have the same result.

Just don't leave surgery out. But don't think of it as a cure. That doesn't exist.
Posted 8/13/2013 1:14 AM (GMT 0)
What is a realistic time to expect to recover after the j pouch 2 part surgery? And what's life like after? No normal stools? Any other problems people wouldn't normally disclose? I am in the same boat. Trying to see if humira is going to work although my doc thinks I should have been in remission by now AND working with a holistic doc to change diet and lifestyle, but surgery is still an option.
Posted 8/13/2013 1:20 AM (GMT 0)
Wow, we seem to be quite similar. I hope neither of us require surgery! Humira 40 mg weekly did nothing for me, other than hurt like hell. I hope it works for you. Good luck! I'm also interested in knowing about realistic recovery times and life after each surgery.
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