I had an ileo in March 03 after 15 yrs of Crohns (crohns colitis) and as many years of steroids and other drugs that failed to keep the disease at bay.
I was offered an ileo 11 years ago and refused as I was a 22yr old male at the time extremely conscious of my appearance etc as we are at that age.
Last year I had to have surgery as things just deteriorated and the medics suggested I have it done 6 days after they told me it was time, whilst I was 'relatively' well enough to cope with recovery.
Initially a temp ileo but I chose to make it permanent 6m after and had all but 6 inches of my colon removed, as although I had the ileo in place I still experienced extreme pain and blood loss etc through the colon, despite being told it would settle!
I have to say 15m on, I wish I had, had it done sooner. The choice to have a major organ removed is a BIG ONE and you must weigh up all the pro's and cons. The advantage(if I can use that term!) with UC is that once the colon is removed, you are free of the disease whereas crohns can still return in other parts of the digestive tract. The docs have actually diagnosed indeterminate CD so are half CD/half UC.
It has changed my life immensely. I am free to go where I want, when I want and eat what I want.
I cannot and would not want to influence your decision because it is your life, body and future that you have to decide on but based on my own circumstances I would not want to continue suffering if someone offered a chance of a pain free life in return for having an ileo.
Life with a pouch will take time to adjust to, physically but I think its a more mental approach that's required because you will see yourself as different and at first being a 'martyr' to the bag. In time you will learn to cope with this and the pouch will take a back seat. It sounds as though you have a supportive family so take something back from them.
As for bag activity, it depends on how much you eat - but there is no need to starve yourself, you've probably done that many times to ease the pain and suffering.
As an idea, 5-6 times a day and 1/2 at night. Bowel activity is very different at first, you will produce a lot more gas until things settle but it's all part of the healing process. Additionally you will learn what foods cause gas/odour together with those that cause loose or thick output and know when to eat them and when not to. I can honestly say that no food is a problem to me and I avoided many foods for years that I can now eat.
Bag changes as an average are required every couple of days, some maybe every day others longer (I go four days). There are lots of different bags on the market according to what you prefer, your stoma nurse should help you through. I did lots of research on the internet when i had mine done and sent off for lots of free samples from different suppliers so i could try the different bags before I settled for the one I use now. Some bags are clear, some covered in 'material' and some you can but covers for! Again, bag burping will only depend upon how much gas you produce and even then, I don't think your likely to inflate the bag like you would a balloon, unless you drink lots of fizzy drinks and eat a diet of cabbage and other green veg! You can visit the bathroom and release the gas, no hassle.
Some of the other 'more-common' problems you could experience are sore skin around the stoma (usually caused by an ill-fitting pouch, barrier creams/powders available to help with this), leaks (again an ill-fitting pouch and you can put sealant paste around the stoma to help), odour (you'll learn what foods cause odour plus you can get deodorant drops to put into the pouch), gas (talked about that above), 'noisy' stoma (unless you produce lots of gas this shouldn't be a problem. You are wearing clothes, so this dampens the sound slightly and although you know what the noise is, others will think it's just your stomach rumbling!).
I'm sure your husband would be only too glad for you to get your life back. My wife was so supportive when I had mine done and she even offered to change the bag for me when I first had it done whilst I came to terms with things. She has seen me without a bag on whilst I have changed it and to be quite honest I don't think the red spout on the abdomen is a big deal.
Advice I would offer:
- Do lots of research
- Get some sample bags and wear one on your abdomen before you make a decision (make sure you wear it in the right place!). Wear it empty at first, then fill with a little water and then a bit more to get used to the 'weight', learn about any inteference with your clothing, any adjustments to your dress that you need to make. Being male I can't offer any advice there! Not everyone produces the same type of output, some always produce very watery output but I don't unless I have drunk lots of liquid
- Talk it through with your family, your fears and tears, your frustrations, your anger and the fact that you will need their continued support and understanding. Don't try and do it alone.
- If you have the op, stop thinking that 'joe public' in the street knows you have a bag whenever you are out and about, they don't!
- If you have the op, get your life back and enjoy the things you haven't been able to.
Apologies for the long reply but it's an important decision for you to make.
Good luck with your decision.