Opting for surgery?

I have severe ulcerative colitis and am steroid dependent. I'm also taking asacol and imuran but cannot get my flares under control. The steroids are the only thing that helps but lately my symptoms are returning when i taper to 20 mg. My GI is on vacation until the first week of august but am told my next options are remicade or surgery. I'm leaning towards surgery as I would like to be med-free and not have to worry about being sick with a flare up all the time.

I also have a one year old daughter to take care of so the decision for surgery is tough as I have to take into consideration the burden I feel I am placing on my husband and the rest of my family who would help take care of her while I recover.

Can any of you who have had a colectomy/j-pouch tell me if you are happy with it? Do you feel it is worth doing it rather than being sick?

Also, if any of you have children I would like to know how you dealt with your recovery and took care of your kids.

I just need some support, I'm really frustrated with being sick all the time. Thank you.

Hi , hope you doing ok .   I'm not in exactly the same situation as you , but am a mum!!!

I ended up in a+ e  and then had emergency surgery as my bowel had perforated , had colostomy  ( mine needed doing twice , but only as they hadn't cleared the infection the first time ) and I ended up being in hospital for about 3 weeks .  I ahve 2 children 4 + 6 - and both at school - was a worry for me  thinking about them at home / huband having to take time off etc , but all worked out ok . Both families local and good friend took them to school etc. My husband didn;t feel it was a burden at all to be looking after them , was just grateful I was ok and is a very "hands on dad " anyway( am aware this is not always the case

  I recovered much quicker than thougt I would , am about 6 weeks into recovery after 2nd op , and wounds healed brillaintly etc , still tired , but feel  moe or less normal ( or as normal as I get )   Obviously slightly different for me as my 2 are older nd I have colostomy not j pouch , but would imagine that if you can plan surgery you can sort out childcare etc - and your little one won't be old enough to remember all the disruption , and as B'dereh says , hopefully will help you in long run with her if you not poorly .

Know this may not be much help at all , as not same as you , but the surgery was definitley took less time to recover from than I thought it would !!!!Take care xxxx

Thank you all for your replies, it's nice to know I'm not the only one going through this.

Kazygirl, you're right, it is so much easier to plan for surgery and recovery now than in an emergency situation.

Everyone's replies have made me feel a lot better about this decision. I might just go ahead with it

I had my surgery in Nov 2011 after 2 years of fighting UC. I tried it all including double doses of Remicade. I was also steroid dependent and toward the end even 30mg and double dose Remicade wasn't keeping it under control.

My kids were 5 and 8 when I had my surgery, and I felt like they had been deprived for the two years I was sick. We didn't go anywhere or do anything. I couldn't even let them play after school in the playground with their friends. It was awful.

I have no regrets at all about my surgery. I am so happy that I did it, and so is my family. I got my life back. If I had it to do over again, I would likely skip the Remicade. It is a very toxic drug, and it makes your surgery potentially have more complications. I know I had to go through the medication ladder so I could be satisfied that I had tried everything before surgery, but in hindsight, I feel like I wasted 2 years of my life trying to get better. With surgery, I was better immediately.

My recovery was really quite good. I went back to work after 6 weeks, but may have been able to go back sooner, but it was the holidays so I didn't rush back.

My ileostomy has been trouble-free and I intend to make it permanent and will have my rectum removed in January 2013.

It's a tough decision, and I can only speak for myself, but it really was the best choice for me.

Good luck.

I could have written your post almost 8 months ago. I was sick with UC for 14 years and on Imuran for most of that time. Once Imuran stopped working, there was a year+ of almost nonstop flaring before the disease went to the point of no return. I was hospitalized and on very high doses of intravenous steroids and still getting no relief. I couldn't even leave the hospital. The doctors were giving me the choice of Remicade or surgery. After a lot of back and forth, I chose surgery, and for me, it was a permanent ileostomy from day 1. I chose that path because I wanted to be done forever, and didn't want to take even a small chance that the disease could come back in any form.

It broke my heart that I was hosptitalized so much at the end, and that my kids had to see that and live with that kind of fear in their lives. They were 7, 6 and 2 at the time. I did my best for them for a long time in the last few months before my surgery, but it wasn't easy, and it wasn't always enjoyable for me. A lot of times I really pushed myself for their sake, but it left me feeling very drained and even sicker. Last fall I coached my son's soccer team and spent half the time in the port-a-potty.

Since surgery I have had some complications, and a few times (briefly) I questioned if I had made the right decision by getting the permanent ileo instead of the j-pouch. As far as the surgery end, there was nothing to regret; I had no choice based on the results of my pathology report. Still, it was tough for me for a few months.

Now that the dust has settled, and I have learned more of what works and what doesn't, AND I am used to my life (which is pretty much the same as it had been), I couldn't be happier. No one really knows I have an ileostomy (except family and close friends), and I like it that way for now. I wear tankinis and go to the pool all the time with my kids. I am coaching two sports this summer, soccer and swimming, and starting to exercise again. I have tons more energy. People tell me I look better than ever, and I can't remember feeling this good since my eary 20s.

Depending on the path you choose in terms of surgery, recovery can be very long, but you will get through. I went back to work at 5.5 weeks post op, and although I was exhausted, it was good to get out of the house and feel productive. Some of us seemed to get our energy and spirits back right away, while for some of us it seemed to take longer. Even though it took longer for me, I am still very happy with how things turned out, and I'd do it all again for the exact same results.

please think about not just the immediate situation with your daughter and family should you have surgery right now, but what about the midterm and longterm if you do not have surgery right now.
So.. you are steriod dependent. What is that doing to your bones? Do you want to have osteoporosis before you are 40? Like some of us. Or what about all the other longterm complications and problems from the other various UC drugs. So think about that. You potentially could be less available for your daughter later by not having surgery now.

Then midterm.. what if you required emergency surgery for your UC. I did. Two downfalls to that. One.. you have no time to prepare your life, for you meaning get care for your daughter in order, care for yourself in order for your home recovery, etc.. AND second you will be sicker and more at risk for complications generally with an emergency surgery.

I had emergency surgery for UC, followed by 2 more for the jpouch. The jpouch FAILED miserably. Was sicker with jpouch than even with UC. Unbelievable. Got diverting ileostomy. And now have a permanant ileostomy. It is GREAT. You can do anything with an ostomy that you could do without. Looking back.. I regret not investigating going straight to a permanant ileostomy and avoiding the lengthy, multiple surgeries, and wasted several years of my life with a jpouch. My doctor at the time laughed me out of the room when I asked about just going permanant and I let it end there and went for the jpouch. I believe if you want the highest chances of a fast, drug free, and better quality of life.. then go for a permanant ostomy.

Have the surgery. It sounds like you already know that's the best option; you just want reassurance. Most people on here will tell you it's worth it. I have a permanent ileostomy and honestly know that it's one of the best decisions I've ever made. Living med-free and knowing that I'm healthy is so wonderful. I actually COULD take care of a child now, whereas before this I could NOT have. I was so sick.

Give yourself about 4 weeks and you'll feel like a brand new person. I went back to work 5 weeks after surgery and I was 28.