Surgery

[Brian1977]

Hi they haven't managed to get this flare of my ulcerative colitis in remission I've tried everything so surgery is the next step. Anyone on here had surgery could fill me in of what to expect thanks

[MyStar86]

I am so sorry to hear of your suffering, what surgery do you have planned just there are many types are they removing a section of the colon or the full colon?

[Brian1977 in reply to MyStar86]

Hi thanks for getting back to me my gi nurse kn Friday said she would chase up the surgeon I need to go see them first to see what options are available so I'm not sure yet which is freaking me out

[MyStar86 in reply to Brian1977]

Try not to freak out about or think worst case scenario just focus on the surgeon will want to be as conservative as possible and all they will want to do is help you plus the surgery will take away your pain so if the surgery can get you your life back then you have nothing to fear. It’s a positive thing taking away the pain as drugs all have their side effects but surgery is a good way of helping you without constant taking drugs that are not always helping having surgery could to the start of a happy future. Just try to focus on the positive and ask your surgeon as many questions as you can to help calm your worries xx

[Brian1977 in reply to MyStar86]

Thanks so much for your kind words. My colitis has led me to have peripheral and axial spondyloarthritis now too so they are finding it hard to treat both conditions. I keep saying at least I'll save on toilet roll lol which seem to be getting me through the now thanks again 🤞🤞🤞

[MyStar86]

it’s very difficult when one condition leads on to others I do know the feeling I also have osteoporosis and endometriosis so I’ve had my hair share of surgeries I think I’ve had around 10 and I have an ileostomy. I was happy to have the ileostomy I wasn’t scared or against it because I see it as a positive obviously I have days where I think ahhh I wish I didn’t have it but it does make one aspect of life easier I am still stuck with a lot of pain and other problems but it’s about taking one layer away at a time. I quite like surgery as I look forward to the general anaesthetic for the pain relief which sounds away but it’s the one time I know I will get a break from it. Once you know more about your surgery options you will feel better but do try to focus on the positive elements as it really helps found into surgery that way and for the recovery. We are always here if you need support or have any questions too so never feel alone or scared. Keep strong and hopeful xx

[Brian1977 in reply to MyStar86]

Thankyou so much I will give you a shout once I speak to the surgeon qnd see what they suggest

[MyStar86 in reply to Brian1977]

Brilliant, good luck for your appointment I really hope it goes well. Just remember to ask lots of questions maybe write them down before you go. Take care and keep positive just imagine being in less pain x

[jackdup]

I have had surgery about 18 months ago although I have Crohns not UC. They removed about a foot of my small intestine, appendix, and some of the large intestine where it meets the small. I’m not sure what the surgery for UC will be like in comparison.

[Brian1977 in reply to jackdup]

How long was the recovery. I know everyone is different

[jackdup in reply to Brian1977]

I had to take it easy for about 6 weeks with no heavy lifting and a restrictive diet for about 6 weeks. I was feeling pretty good after a couple of weeks but still followed the doctors recommendations and took it easy for the six weeks. My sister-in-law ended up having a leak after her surgery and was in the hospital for an extended time so I made sure to take it easy.

[Brian1977]

Hey peeps I met the surgeon last week he is going to do it in September. I'm getting my whole colon removed ill have a temp stoma for 6 odd months to let things heal then he will do a j pouch. I'm really nervous but excited to get rid of this awful disease

[Sunligh7]

Hi Brian, So sorry to hear your having a bad flare up . It truly is challenging.I had a flare this year and it was impossible to control. I was admitted to hospital but after 6 weeks and several infusions of infliximab I was advised to have surgery. I had a colorectal of the whole bowel and was left with rectal stump and now have a stoma.

It’s a major operation and not without risks and the recovery time can take at least 3 months. I’m know 3 months post operative and starting to do more.

I’m 67 and what helped me is you UC will have gone after surgery. No more flares and medication.

The stoma takes a bit of mental adjustment but it’s easy to care.

I guess it depends on the damage to your colon , whether you want to try other drugs etc.

Hope you get some advise from the surgeon. You can get second opinions.

Take care and good luck

[Brian1977 in reply to Sunligh7]

Aye my colon is broken and so am I. I just want it gone now and hopefully get some of my life back it's led me to having axial and peripheral spondyloarthritis now too