How do I help my daughter

[denisec]

I may not be on the correct forum, but I bet you all can help me. My father had UC as well, then later died from colon cancer. He refused to get medical help for his UC.
My daughter has ulcerative colitis. We have tried every form of treatment possible - any medicine you see on the ccfa site she has tried and it didn't work. Except for IV steroids...but that is no way to live. She is now on Remicade - but her symptoms keep coming back between infusions worse and worse. Its been over 2 years of her having rectal bleeding, pus, anemia, fatique. We met with the doctors on Monday. Our daughter has been wanting surgery for some time. And now the her medical team agrees. We are setting it up for next spring..if she can wait. She has been losing weight -and as her main doc says "She is not thriving".
I am the sort of person who likes to prepare ahead for all things. They say she will need 3 surgeries probably. She will have an ileostomy until they can put a J Pouch in place with the last surgery. What can I do to make her more comfortable - what can I have with me - or what advice does anyone have for me on taking care of my daughter with these surgeries...
Thank you ever so much for your help.

[Loopy369]

Hi

Very tired, so please excuse factual tone, I can see you are a worried, caring mum.

I had an ileostomy due to rectum removal for cancer, and therefore a j-pouch created - all three at the same time, so only waiting for reversal so I can use my j pouch next year when I've finished chemotherapy.

I don't know where you are but if you're in America try http://www.uoaa.org

or www.ia.org in UK

read through some forums and stories - that's the best way to see what helps.

Personally I think making sure your daughter eats or at least protein drinks and plenty of fluids is the first priority after surgery. Salts are lost fast, as is water with an ileostomy - about 10 times more than the fully working intestinal system! At least early on. Dehydration made me weak, tearful, nauseous and miserable. Salty potato crisps (chips if you're in US) and flat (not diet) cola is good for emergency rehydration. Bananas are a good source of potassium and will make the output less liquid.

Face wipes, nightdresses - catheters prevent wearing pyjamas. Talking books on mp3 or cd - may not feel like reading after surgery. Snacks to eat when hungry - not always meal times in my case. Dry hair shampoo - spray powder in a can - really not easy to wash your hair if you've had a big abdominal op.



sorry I can't write much more, I'm feeling a bit rough - but search for my other posts and they should take you to more related information at least.

Best wishes

Lisa

[DeeDee]

When she first has her ileostomy she will need to really watch what she eats. Anything high fiber is a definite no for the first 6-8 weeks. You also want to avoid foods that make you gassy during this time Be sure you get a list of foods to avoid during this time. Hydration is a big issue with an ileostomy because the colon absorbs most of the water in your digestive system. Monitor her fluids in and out to make sure she drinks enough fluids. Remember the BRAT (bananas, rice, apple sauce, dry toast) diet to slow down and thicken the output. Gatorade is great to keep on hand because it helps with both the water and electrolytes. More frequent small meals usually work better than big meals. Once this initial period is over ad the swwelling has gone down she acan experiment by adding in small amounts of different foods one at a time to see how she responds.

There will be another big adjustment when the ileostomy is reveresed. It will take some time for things to function normally again. The mount of time varies widely from person to person so just be patient.

Definitely check out the United Ostomey Associations web site that Loopy369 lists. Has a lot of great stuff to help.

[northern lights]

Before surgery, talk to the doctors about pain control. There are the normal narcotics or an epideral. I went for the epideral, because I hate that drugged feeling.

I was most comfortable half sitting up, but because I was sleeping most of the time my head would always fall over and I had a sore neck. My assistant brought me a stuffed animal on day 2 and I was able to put this on my shoulder and it supported my head. Long story to say one of those travel neck pillows would increase comfort.

Bottle of water...nurses were far too busy to keep bringing me water.

Favorite blanket.

Face wipes are a really good one suggested earlier. Saves getting up to freshen up.

Slippers. They will get her up as soon as possible and encourage her to walk. Socks will be too hard to get on and off.

I wish her a speedy recovery and finally some comfort.

Sharon

[Lifes2short]

Just to echo Loopy's advice. www.uoaa.org is a great source of information - lots of people who live with UC.

Best of luck to you.