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Ulcerative Colitis
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Posted 6/19/2015 1:18 PM (GMT 0)
We'll I have been in hospital on and off for the past three weeks with an acute UC flare that has been relentless. My UC has been classed as mild and then to moderate and now very severe.

I have tried every drug in the book including two lots of Infliximab and nothing has worked to calm it down so I'm going to be having surgery and I can honestly say I'm nervous but looking forward to my new UC free and med free life. No more prospects of flares around the corner! I am not bothered about having an ostomy bag at all and I've spoken with the surgeon and stoma nurse and they've assured me that I can have a normal life with it. Anything is better than now where I'm riddled with pain, malnutrition, bloody diaherea.

I wish you all the best in your individual battles with UC and hope you find relief and remission. I for one am over with this disease at 32 years old and am ready to live a UC free life without meds! I can't wait to be born again!
Posted 6/19/2015 1:23 PM (GMT 0)
Good luck and keep us updated!
Posted 6/19/2015 1:42 PM (GMT 0)
Good luck Happy!
Posted 6/19/2015 1:57 PM (GMT 0)
will you have a permanent ostomy then? No J-Pouch?
Posted 6/19/2015 2:01 PM (GMT 0)
Yeah I was wondering why you wouldn't go for the j-pouch too?

best of luck to you. I think it will give you your life back. 3 weeks in the hospital is a long time, it must be difficult... It will be nice to put this in the past.

Do you have a date set for surgery?
Posted 6/19/2015 2:11 PM (GMT 0)
Good luck, here's to a speedy recovery from your surgery, and finally saying goodbye to uc :-)
Posted 6/19/2015 2:20 PM (GMT 0)
Good luck!
Posted 6/19/2015 2:28 PM (GMT 0)
I had my surgery 5 years ago next week. Time flies! I've been UC free for the past five years and I still get emotional about it. It's wonderful to never have to worry when the next flare will pop up and surprise you. Keep a positive attitude and be patient....you'll do great. Best of luck.....if you have any questions, feel free to ask. :)
Posted 6/19/2015 2:58 PM (GMT 0)
don't sweat your ostomy bag if you are at all. I've had a temp loop ostomy with a previous surgery. It may seem overwhelming at first but you ostomy nurse is your best friend. They will train you in what to do and it will become second nature to you. I'll suggest something and this was a personal preference for me, I loved the two piece bags. The ones I used were from Hollister. It allows you remove the bag while leaving the flange attached to your body. It was helpful for me to get the gas out of the bag when it filled up. I also removed the bag when I showered and was able to clean off the flange and stoma then either put a new bag on or reused the same one.
Posted 6/19/2015 3:26 PM (GMT 0)
You're probably doing the right thing. To be honest, even if you recovered from this flare-up, the likelihood of another equally severe flare-up is very high. I was in a similar position to you in 2011 and my surgeon wanted to do surgery back then, but my GI argued for giving Remicade longer to work (I'd had 2 doses and received my 3rd one in hospital). Didn't even find this out 'til later, so I basically had no idea how close I was to surgery until after I was out of hospital.

Anyway, my point is that after that flare-up I kept on flaring up and being hospitalised. I responded rapidly to IV steroids every time, but the effect never lasted. I probably would have been better off having surgery two years earlier than I actually did: something my GI admitted to me.

Have had an ileostomy for 2 and a half years. It was never something I loved having, but you do get used to it. I tried out a few different bags before settling upon the Coloplast Sensura: they stick well and I've had virtually no leaks with them. The Coloplast Mio is out in the UK now, which is Coloplast's newest bag: you might want to give that one a go as well.

Best of luck.
Posted 6/19/2015 4:31 PM (GMT 0)
Hope the surgery goes well. I think you are doing the right thing. I would if I was in your shoes.

Let us know how you are doing!
Posted 6/19/2015 7:18 PM (GMT 0)
Sounds as though it's a great decision. Looking forward to your updates. Wishing you a well recovery.

Huge hugs of support!
h
Posted 6/19/2015 7:23 PM (GMT 0)
Best of luck Happychick!! You have to do what's right for you and that's all that matters!

I hope you keep us posted on how things go for you and know that I'm wishing you a very speedy recovery so you can live a full life pain free from UC!!!
Posted 6/19/2015 8:01 PM (GMT 0)
Best of luck. Please do let us know how you get on. I've been considering the prospect of surgery since Jan 2014 so it would be helpful to hear how you're doing.
Posted 6/19/2015 8:16 PM (GMT 0)
They are leaving in my rectum so I have the option of a j pouch later on. Because of the state of my health and colon at present, they want to do the surgeries in two stages and leave at least 9 months if I choose to have the j pouch. Plus the surgeon knows I still plan to grow my family and prospects of conceiving after the total colectomy is better than after the j pouch due to the positioning of the pouch and scar tissue. I may or may not choose to have the j pouch later. It's how I feel about having an ostomy, whether I want to put myself through surgery again. Also they keep telling me the complications with j pouch surgery and that my bathroom visits would increase quite a lot.
Posted 6/19/2015 8:52 PM (GMT 0)
My sister has had her Jpouch for almost 20 years now, no meds, no doctor visits. She does go to the bathroom maybe 4-5 times a day but she is able to completely control it :)
Posted 6/19/2015 9:04 PM (GMT 0)
Usually they remove the rectum in surgery #1 if it's going to be a 2step I thought.
Posted 6/20/2015 3:55 AM (GMT 0)
I guess I can say that i think I'm UC free, with reservations, what do you say to a GI who is a 'stodge' of BIG
PHARM and sez ' I gotta take Asacol ' the rest of my LIFE ! 'Cuze me doc, I guess BIG PHARM has got him!
Posted 6/20/2015 4:57 AM (GMT 0)
Thanks for all your kind comments. I will probably head to surgery on Monday. Very nervous about the actual surgery especially as my immune system is in shatters at the moment with all the drugs they pumped in to me and I am quite anaemic because of the blood loss so not ideal but might just mean recovery may be a little longer.

The only surgery I've had in the past has been a c section so this is huge. I had the stoma nurses come to see me and they were wonderful. They marked up where my stoma will be on my right hand side and gave me a pre op pack where I could practice using a ostomy bag.

I'm in a mixed bag of emotions right now. Mainly apprehension. But I feel in my heart that this is the right thing to do for me to have a fulfilling life. I'm only 32 and have my whole life ahead of me. I need to be healthy to look after my two year old daughter. Right now she can't even see her mummy and it breaks my heart. I never want to leave her again.
Posted 6/20/2015 5:13 AM (GMT 0)

notsosicklygirl said...
Usually they remove the rectum in surgery #1 if it's going to be a 2step I thought.

No they told me they won't be removing my rectum. But I don't get it in a way?? I mean my rectum also has colitis in it and is quite inflamed at the moment. So surely I can continue to have colitis in there?? I asked them and they said it could get inflamed still but because I would not be passing any stool out or it it would most likely heal quickly and would be ok. But that when inflamed would have to use rectal meds still when needed but nothing else like steroids or any meds
Posted 6/20/2015 10:29 AM (GMT 0)

notsosicklygirl said...
Usually they remove the rectum in surgery #1 if it's going to be a 2step I thought.

in a two step procedure yes. My rectum was removed in my first surgery and I was given a loop ileo. The j pouch was also created. It's a LONG procedure. I was in the OR for 8 hours. Then step two is the reversal. In a three step procedure just the colectomy is done in the first surgery, the rectum stays and an end ileostomy is made. The rectum comes out when they create the j pouch in the second surgery and you get a loop ileo. Then the third surgery of course is the reversal.
Posted 6/20/2015 10:59 AM (GMT 0)

Happychick said...

notsosicklygirl said...
Usually they remove the rectum in surgery #1 if it's going to be a 2step I thought.

No they told me they won't be removing my rectum. But I don't get it in a way?? I mean my rectum also has colitis in it and is quite inflamed at the moment. So surely I can continue to have colitis in there?? I asked them and they said it could get inflamed still but because I would not be passing any stool out or it it would most likely heal quickly and would be ok. But that when inflamed would have to use rectal meds still when needed but nothing else like steroids or any meds

yes, UC can still attack your rectum while it's still there but as your dr said, it should be more manageable since stool won't be passing thru it's going to get a rest. You may have some bleeding still if you've had bleeding in the past.
Posted 6/20/2015 12:48 PM (GMT 0)
Good luck Happy! Pls keep us updated.....Best wishes for a speedy recovery!
B
Posted 6/20/2015 1:14 PM (GMT 0)
You'll wake up from the surgery and you'll feel so much better. I woke up from my colectomy and I could tell that I was healthy again, I felt healthy but sore. The pain wasn't that bad, surprisingly less then I expected. After your surgery you'll probably be out of the hospital in 3-5 days.

Don't worry about the compromised immune system, it is very common for this type of surgery. Every surgery is major surgery if it is happening to you but the colectomy is a common surgery that most general surgeons can perform. This is not the case when you have the jpouch created, you need a skilled CR surgeon for the jpouch creation and you need to be healthy enough at the time. That is why some people have 3-Step surgeries compared to a 2-step, if you continue on to have a j-pouch then it would be a 3-step.

I didn't care about "the bag" at the time, I just wanted to feel better again. "The bag" issue really never bothered me because I knew that it was temporary, plus it was nice to be able to eat real food again.

Good luck on Monday. You'll probably be eating real food again for July 4th, enjoying your family and healthy again.
Posted 6/20/2015 1:35 PM (GMT 0)

Happychick said...

notsosicklygirl said...
Usually they remove the rectum in surgery #1 if it's going to be a 2step I thought.

No they told me they won't be removing my rectum. But I don't get it in a way?? I mean my rectum also has colitis in it and is quite inflamed at the moment. So surely I can continue to have colitis in there?? I asked them and they said it could get inflamed still but because I would not be passing any stool out or it it would most likely heal quickly and would be ok. But that when inflamed would have to use rectal meds still when needed but nothing else like steroids or any meds

I don't get why they need to leave your rectum in at all, even if you have a j-pouch later - the j-pouch is not created from the rectum. All they need to retain is the sphincter muscles and a bit of rectal cuff.

I have diversion colitis in mine and it's slowly got worse in the last two and a half years. For the first few months I had no issues at all, but then the mucus and finally the bleeding started. I also have occasional urgency, which means dashing to the bathroom. My main worry for you is that your rectum won't heal.
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