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Ulcerative Colitis
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Posted 1/8/2014 12:39 PM (GMT 0)
Dear all,

4th pred taper going twice a day but losing weight all the time. This indicates that i am unlikely to not need pred again. I had decided already (reluctantly) that I would have to speak to surgeon as i am sick of this flare that had started april 2011 and have only had 2 months off pred after 3rd taper with aza.

I am scared and worried who would not be! But i am coming to terms with the decision and have set my mind to finding the best solution with my circumstances. I want some resemblance of normality to my life. I apologise in advance for the number of questions in this post and others no doubt that will follow but appreciate any time from those of you who have taken this journey. I would like to say at the outset i have not taken any discussion with consultant or ibd team about this as I want to hear it from patient perspective first. My intention is to go for j pouch eventually depending on my suitability and have come to terms with the fact that there is a chance it may not be for me.

1. Generic one first. You have been here what are you top bits of advice on any aspect of where i am at and the road ahead
2. What is the advice and what determines whether you have a 2 stage or 3 stage
3. Do you have any regrets ever about having the op
4. A bit of a personal one but i have to ask from the male and female perspective. how much of an effect does the surgery have on your love life with your partner
5. How long is the recovery (im classing recovery as back to work after each stage)
6. What is the best and worst thing in the quality of your life after op.

I have plenty more but dont want to put off anybody on answering questions.

Many thanks in advance for your time.

PS im having 1 last try with a top top chinese herbalist who has success with saving sufferer of colitis at my stage of the disease. But im exploring surgery as well to prep myself. As if I choose to do this route (90%) likely I want to have surgery end of June as I am self employed and staffing is easier for me that time. Also kids off school during recovery to so school runs not an issue with Mrs to be around to he
Posted 1/8/2014 1:40 PM (GMT 0)
1. Kind of hard to answer this bc I don't know what other drugs you have tried, or what condition your colon is currently in.

2. I had (2)stage and I was on 20mg pred when I went in. I thk your surgeon will decide this on many factors including: the amount of pred your on, how old are you are and what condition your colon is in.

3. The only regret I have is not getting it done years ago.

4. No effect after the completion of last surgery (except some surgeons will have you freeze a sperm sample before surgery just in case, although mine did not). I still had sex in the three months in between surgeries and I didn't have a gf at the time, I presume thats what your referring to by "love life."

5. I work in an office, so after my first surgery I was back to work in 4 weeks. Post 2nd surgery, about 2 weeks.

6. Best thing is that your "cured." Only bad thing for me, is that I had to give up drinking beer (unless I take Imodium).

**I would advise on getting a top-100 surgeon w/ plenty of experience.

E-mail me if you would like.
Posted 1/8/2014 1:47 PM (GMT 0)
i am in the uk and need to look into how it works here on the NHS and will do my best to try and get a say and choose the best surgeon. Thank you for your answer.

Regards to meds I am currently on 5mg pred (was good on 10 now wobbling) 175 mg aza, and 2 x 3 caps a day of balsalazide
Posted 1/8/2014 2:04 PM (GMT 0)
They will match your steroid dosage (liquid) through surgery, then will have you continue to taper afterwards.

Okay I see - Aza (Imuran/6mp) and a 5ASA. Aza might effect the number of stages for surgery. I was only on pred and LDN when I went in for it.
Posted 1/8/2014 2:08 PM (GMT 0)
St. Marks of London is the best hospital for jpouch surgery in the UK.

Your surgeon will determine the steps, not you.
13 years with a jpouch; no regrets; I should have done the surgery a year sooner.
I had a 2-step and went back to work 3 weeks after each surgery.
I have no 'worse' quality of life issues. I've been very very grateful. I'm a long distance international hiker (100-200 miles) and that career was cut short with UC. Surgery gave returned my hiking life to me. I've not regretted the surgery once.

Sue
Posted 1/8/2014 5:54 PM (GMT 0)
Hi imran123,

I had j pouch surgery after exhausting all the meds. I had a two step procedure done laparoscopically. The first step was the proctocolectomy and j pouch creation. The second step was the ileo reversal aka takedown just a bit over three months later. So start to finish recovery for me (feeling good and functioning) was 4 months. I have had a very successful outcome.

It will depend on who you choose as a surgeon about how many steps your operation would be done in and also what your health is. If you choose a surgeon who is experienced doing it in two steps laparoscopically (and you are a candidate) then that's a super bonus in my opinion.

I've been married a while so this didn't have any impact on my love life. We have seen it all with each other!

I would say the best thing with my j pouch is in terms of quality of life is that I have quality of life now where I didn't have any at all living with UC. This procedure gave me my life back. The only real negative thing I can say about living with a j pouch is sometimes I get some pretty bad butt burn since there is no colon anymore to absorb acidity foods. But it's totally manageable with a cream I use as a barrier when I know I ate something acidic

Good luck with your decision. I know it's a tough one to make but I'm so happy I did it.
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