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
I live in San Diego with my best friend and partner in crime, Robert. We love the ocean and our furry dog , Harper Lee.
Hi, Megan —
I may not be able to address all of your questions, but I just had my surgery on Feb 8, also after years of UC. I, too, made the decision to take matters into my own hands while I was healthy and able to recover. Here’s my experience so far:
1. Because he’s young, Robert will probably be fine through surgery. Your surgeon will have info for him, but he may have four days in the hospital. Having you there with him will help a lot. I know it helped having my family there for simple things, like getting juice, helping me up, etc. Even tho it’s only been six weeks for me, adapting to the bag is actually quite easy. I recommend watching any number of the YouTube videos for changing and emptying his bag. Some are quite good.
2. Once healed, water sports with the stoma should be no problem. I suggest looking at a product like Stoma Seal. http://www.costamedical.org/
3. The stoma has no feeling, and you want to keep the skin around it as protected as possible. There are any number of wafers and pouching systems out there for him to try while he has his stoma. The companies that provide them are very happy to help and answer any questions. Also, you might ask around at your local hospitals to find a good local WOC (Wound and Ostomy Care) group. Having someone local to ask questions has been comforting for me.
4. The first 4-6 weeks after surgery his diet may be quite limited. But after that time he’ll probably be encouraged to experiment with whatever foods he likes. I’ve found that so far I can eat whatever I like just six weeks after surgery. I’m careful not to overdo it, but I’ve tried bell peppers, broccoli, raisin bread, and even a few strawberries this week, and have had no problems.
5. This is a tip I found on the YouTube channel of UCandPSC: Put a water proof mattress cover on the bed, then a lower fitted sheet. On top of that, put some waterproof pads from the drugstore, then another lower fitted sheet on top of that. Then, if you have any problems, you simply have to remove the top fitted sheet, and you still have the bottom sheet to carry you through the rest of the night. I thought this idea was brilliant and did this, but it was total overkill for me. I now just have some waterproof pads under my normal fitted sheet. I’ve had not problems at night at all, and hopefully Robert won’t either. BTW, the UCandPSC YouTube channel is a video diary of a young man going through exactly what Robert will be going through. I recommend it.
6. I have no problems remembering how sick I was, and that has kept me from regretting any decision to have my colon removed. I did have about two days of sadness, when it seemed everybody I saw had a colon (and they all did, I’m sure!) and I did not. But it passed quickly. :)
7. Robert sounds quite fit, and I’m sure that will help him after surgery. There’s probably no reason why he can’t continue his life as before. Just make sure you follow up with all your doctor’s recommendations.
Trust me, I know how scary this is. I’m still close enough to remember the panic I felt the weekend before my surgery. But now I’m convinced more than ever that I did the right thing. I take no medications at all, and I really feel like I have the chance to be healthier than I’ve ever been. I wish Robert the best of luck and health going forward….SUSAN
Megan, I had the surgery 4 months ago, was diagnosed with UC 2001, Jan 2015 the flair was very bad, to make a long story short after much pain, many meds, and no eating, had the surgery Dec 2015. My colon was totally blocked and they removed my rectum, it was that bad. Anyway..it is a new normal but I am getting to lead a pretty normal life now. I suggest you go to a web site http://www.inspire.com, most everyone on there has had the surgery and has been a great help to me and answered so many of my questions and they will answer all the questions you have Also if you go in youtube and type in ostomy there are tons of videos from people who had the surgery and they are mostly young like Robert. They hike, they run, really except for the bag and changing and emptying it they lead a normal life, and they all say it gave them their life back compared to the way they were living. It is an individual choice to have the surgery or not but if Robert decides to have it, there is life after ostomy surgery. One of the things you mentioned is water sports, well I just love to swim and am getting to the point next week were I will give it a go. Everyone who has had the surgery says it is no problem, I am getting stronger everyday and since Robert is much younger than me his recuperation could be much quicker. Hope this helps..Candi
I’ve had the 3 surgeries. My views on your questions:
1. Sweet as. The pain from the op is not as severe as one would expect. I was home after a day or two. I felt a lot better having had a knackered colon removed. there is now nout left to bleed.
2. I tried 2 types of bag. Not sure of the brand now but mainstream. Both stayed on in the surf no problem at all. Why not just take it off altogether?
3. You must ensure the hole in the colostomy bag fits as best as possible to the stoma. Ideally you cut the hole yourself. The stoma changes size overtime. Any exposed skin will become aggravated by the discharge. Change bag at least twice a week. If left unchanged it also causes aggravation.
Once reconnected the arseburn can be mighty. Dimethicone, castor oil and zinc ointment help. I’d advise not wiping but rinsing with water after pooping. Can use the showerhead if it is not stuck to your wall.
4. Chew food extra well. You don’t want a blockage. Beer doesn’t agree with me. One is ok more than that results in watery poop. Tequila shots seem fine however. Metamucil or Klonsyn-D (psyllium husk) etc. is essential for me before any food or drink.
5. Yeah the bags can leak. This is if they fill up too much while you sleep or if they have been on a while. Not too much of a drama. I was up once or twice per night to empty bag every night. Can roll over onto it also. Use a mattress protector.
6. It’s a piece of piss mate. Just deal with it.
7. Get as fit as you can before surgery. Over a year after re-connection and I’m unable to return to my normal job. This is becuase I need to go to the toilet so often and I have fecal incontinence at night. I believe I have recurrent pouchitis / cuffitis. I’m having a pouchoscopy next week to try to shed some light on the matter. Doctors advise it can take 2 years before J pouch settles down. IThe only relief is when I’m on cipro and metronidizole 9antibiotics). Not everyone has this outcome. I’m just less fortunate than other who report better outcomes. Lets put it this way: I wouldn’t hire me
Good luck. I’m glad I got rid of my colon. Just go with the flow.
Hey Megan,I’m going on 3 1/2 years and I feel great!!! He will be fine,and he’s making a great choice.everyone suffering with uc should get the jpouch it’s not bad.i can go up to 9 hrs without going to the can.its a normal life.i was even happy with the bag at the time,no more pain,drugs,or running to the bathroom.i eat and drink anything I want.mine was done in 2 steps.energy level comes back with in a few weeks.i was 160lbs out of the hospital now I’m 225 I own and run 2 snack routes all week by myself and can wait to get home to use the bathroom. Well good luck !!!
1. probably depends on the surgery. I had a robotic assisted colectomy which was minimally invasive and I went home after 3 days. Went back to work after 4 weeks. Pain was not a problem after the first week.
2. I had my procedure during winter so I didn’t take it in the water. However, I only had the bag for 3 months.
3. for skin around the stoma (not stoma itself), stoma powder and barrier wipes. For the butt burn after reconnection, calmospetine ointment
4. I added a fiber supplement. The only real thing I keep away from now is citris and nuts.
5. put some kind of pad down like you would for a toddler who is toilet training.
6. entertainment and knowing it’s temporary.
7. I did short term disability but was able to go back to work after 4 weeks from the first surgery (have desk job).
Hey Megan and Robert,
Sorry to hear that things aren’t getting better with your UC Robert. I’ll try to address them in order (although many of my answer may be repetitive from answers above)
1. I instantly had more energy. Partially because I had blood transfused for Anemia, and partly because I was being given IV lipids to put weight back on.. but within a few days I was eating soft food again! As his caregiver, just be patient. It took me some time to adjust to the idea of having the bag, just having people around to listen and agree with me about how frustrating/unfair it could be helped a lot in the beginning.
2. I also grew up in SD (Carlsbad, specifically) and surfed regularly. I don’t as much anymore, but thats a result of living in Northern California and having a job. Whenever I go home to SD I surf every day. I use Stealth Belt for basically everything. I have 4 of them. one for water, two for running (I run a lot), and one for casual wear. They have different materials in each, but the neoprene water sports one does great for surfing. Just make sure you learn to time your bowel movements before you zip up the wetsuit for a long session. I’d even take some lomotil to slow down the digestive tract if you paddle out for more than an hour at a time. As long as the bag isn’t full, laying on my board to surf isn’t a problem. I had surgery in March 2014, and went on a 3 day surf trip to Baja CA in July of the same year. I also swim a fair amount in the pool. Robert, it is also worth it to have a blow dryer to dry off the bag after you get out of the water if possible. obviously when it dries it sticks better, but the heat also helps the adhesive work better!
3. I use Convatec stomahesive. i used something else for a while but was allergic to it and found my way here. i urge you to try a few things..companies will send you samples for free on request. Biggest thing thats helped me is to shower without a bag whenever I change it. aside from feeling nice, it helps keep everything clean and healthy. its my bi-weekly anxiety-free shower. hah!
4. This is the best part (at least for me). As long as I chew it well enough, I can eat it without problems. haven’t run into anything I can’t eat anymore. I avoid corn and things like Kale because they dont digest well, but I avoided both of those things before I was even sick, so I dont feel im missing out on much. If you love Kale, smoothies are recommended. I blend at least one meal a day.
5. I’ve had 2 leaks while sleeping in 2 years. Neither were very bad and simply required washing my sheets. That being said, luck favors the prepared. Find something that protects the mattress. There are a ton of things out there, just pick the comfiest one!
6. stay positive. when you aren’t feeling positive, talk it out with a trusted friend or significant other. Remind yourself of what is most important to you. For me, that was running – something I wasn’t able to do with UC, but can now do again with an Ostomy. With the right attitude you’ll find that there isn’t much you can’t still do with an ostomy. sometimes reaching out to other ostomy patients helps too! We’re generally pretty friendly and all want to help, cus we know what you’re going through. You can even shoot me an email if you want!
7. I havent gotten a Jpouch, and am considering not having the procedure done at all. After coming back from being sick, having an ostomy and being healthy was too much fun for me to commit to another series of surgeries. My recommendation here is to slowly, but methodically, build up strength. After surgery, you’re prone to hernia’s. Your abdomen is weak from being cut open, and you haven’t been using your core muscles a whole lot while you were sick. Take the time to make them strong again, and become a stickler for proper lifting form and mechanics. Minimize the risk of hernias in the early weeks/months. If its less demanding physically, I don’t see why you couldn’t get back out there in as little as a couple weeks. Given an option though, I’d take at least a month to get comfortable. Hope this helps!
Hello Megan and Robert,
I guess your surgery is coming up and I wish you both all the best. Others have given a lot of good thoughts and suggestions. I really don’t have much to add, especially as my emergency surgery was over 40 years ago now and I have forgotten a lot of the specifics. I have always been grateful for the ileostomy, though; it gave me my life back.
I did want to discuss going back to work. To get back into life’s routines, and knowing others were covering for me, I wanted to get back as soon as possible. Fortunately my job was such that I was able to start with just a few hours a day (mid-day so I could have lunch with friends). Then over a two month period I worked back up to full-time.