I’m Megan, I live in San Diego with my best friend and partner in crime, Robert. We love the ocean and our furry dog , Harper Lee. Robert has lived with severe UC for over 5 years now. I’m always looking for ideas to get support, share ideas, and learn more about how to help him live a better life and work towards health.
Hi Everyone – Meet Robert.
You will never find someone with a better outlook on life, even though he has dealt with severe UC for over 5 years now. Robert is in his late 20s building his career and life while struggling with his health every day. After ever diet and drug under the Ulcerative Colitis sun, he is still fighting his colon and his colon seems to be winning (or getting very worn out from being so sick for so long). He’s come to the conclusion that he can live a better life with going the surgery route. I’m here to find a good group to connect with as we take this next step and journey through the three part surgery. He is scheduled to have the first of three surgeries in a month from now and I am looking to ask questions, share ideas, and use this great support system from the feb162019ihaveuc.mystagingwebsite.com website.
Here are some questions I have for all of you that know how the surgeries work and what we can possibly expect.
- After the first surgery, what is life like after coming home from the hospital? Energy levels, eating, pain management, adapting to life with a bag? How can I help make this easier as his caregiver? Any of your shared stories can really help us!
- For you water sport people, has anyone found a good bag and system that works really well in the water? Robert is an avid surfer and being out of the water for maybe over a year seems to be out of the question. If you have any recommendations for a brand or type of bag, please share!
- Ointment recommendations? I’m talking ways to help the stoma from itching, or once he is reconnected fully, something to help his bum from burning.
- Diet changes? What foods did you have to cut out after having surgery? Robert is currently gluten free, eats pretty healthy, juices, and stays away from most creams and dairy products. What did you find you had to change when you had your bag or after the re-connection?
- Getting your bed ready – Something I haven’t seen much info on is making sure your bed and mattress will be okay if your bag leaks – any recommendations for mattress pads or ways to minimize the “crappy” (pun intended) experience of a leak?
- Mental Wellness – I have read and talked with those that have had the surgery, and a big part of waking up with a bag is dealing with the mental aspect of your body functioning differently than it has for several years. Any recommendations for how to deal with it, and keep from getting really rattled from the change?
- Work – Robert’s job is in commercial construction management and he works 10-12 hr days and it is pretty stressful. My take is that he can heal better if he takes a good amount of time off in between each surgery – although he is not the type to sit around and do nothing… he likes to stay busy (see the mental wellness question above too). How did you handle surgery and work? Did you feel better after a few weeks to go back into work full time? Do you recommend taking as much time as possible to get healthy? His health care and coverage is good and medical leave will cover him for as much time as he needs. What’s your experience?
I know many people do sooo much better after surgery and I am hoping this can be our realty after the long healing process. I appreciate any help and insight you all can provide for us. I admire and respect all of you that live life with UC – it is not easy to deal with all the comes with this disease and you guys are truly brave for going through this! Much gratitude for reading this and thank you so much for your help!
written by Megan
submitted in the colitis venting area