PSC/UC

Hi! I'm new here. I am a 35 year old woman and have a history of PSC and UC and recently learned that I have areas of dysplasia in my cecum following an annual colonoscopy. I am preparing for a J pouch, 2 step procedure beginning in January. I have been in remission from UC since an awful bout with C-Diff 3 years ago. As someone who is (very, very thankfully) not in a flare prior to surgery, I was just wondering what I can expect during recovery? How much help should I enlist from family and friends in the short term? Can anyone else relate to being in remission prior to surgery? For me, it is all so surreal because I feel like my diseases are finally well managed and then....bam....dysplasia.

I am incredibly grateful for the vulnerability and honesty conveyed by all who post. You are a true inspiration to more than you will ever know.

Thank you!

 

 

Original Post

Hi MISSCARISS.  You and my husband's situation sounds very similar.  He also has been suffering from UC for the past 9 years.  Nothing has worked.  He's currently on Lialda and Imuran but they hardly do anything.  He's tried Remicade and it nearly killed him.  Prednisone was the only drug that worked but he can't stay on that forever.  His last colonoscopy revealed displasia throughout his colon and rectum.  In January he will be having two operations.  The first to remove his entire colon and rectum and construct the J-Pouch.  The second will be the take down.  

I hope all goes well with your surgery and wish you a comfortable as possible speedy recovery.  I will be following along in your journey.  

Miscarris:

I'm in the same boat as you!  I'm 32, and I have PSC/UC.  They found dysplasia in my ascending colon after a regular colonoscopy in October.  Now, I'm scheduled for the first surgery to remove my colon at the end of January.  

In looking online for other people's stories, yours is the first where you are relatively healthy going into surgery.  Like you, I'm hopeful that not being sick will help make recovery as quick and easy as possible.  It's kind of hard, though.  As I'm not sick going into this whole thing, I feel like the "new normal" is going to be harder to accept (I already feel fine.  Not having a colon won't fix any pain or bowel issues).  

Anyways, I hope things go well for you with your surgery in January!   If you want to chat ever, I'd be on board for that.  

Autumn

Autumn,

i had my colon removed while i was extremely sick and i had a terrible recovery and many complications. I think going into the surgery healthy is extremely positive. We all agree that who your surgeon is makes a highly significant difference so hopefully you’ve done your research. 

Hello, Misscarriss. I went to my two step surgery without UC symptoms, and was healthy and strong. I was diagnosed with UC more than 30 years ago. Other than three or four flares per year, I was okay. I was not on any medication for UC, not even during the flares. So I went into surgery completely healthy and very strong. Except for stage 1 rectal cancer, which was very small and discovered early. I showed no symptoms of cancer at all. The cancer was removed along with the colon and rectum. 

So I was strong and healthy going in, and I know this helped in my speedy recovery after both surgeries. When I got home I ate whole foods (no processed or instant foods) focusing on nutritionally dense foods. This plan helped me heal so quickly that my surgeon approved my takedown at 10 weeks. I was relieved about the quick takedown time because my stoma was stubbornly retracted and caused excoriated skin.

After takedown I had pouchitis a few times during the first eight months and took Cipro for 14 day stretches, and a probiotic -- but not at the same time, always leave several hours in between. Now at 20 months after takedown I haven't needed Cipro for a year and no need for probiotics. After both surgeries I drank gallons of homemade bone broth and vegetable broth daily for salt and hydration. You can also buy organic broth to drink and cook with. Don't buy the ones that say "no added salt" because you definitely want the salt for hydration. I have to watch my blood sugar now and that means my carb intake is low and I avoid anything white (rice, bread, flour, sugars), which is probably helping me avoid pouchits. I eat brown rice cooked in broth, and this seems to help thicken things, which is good because thicker means fewer trips to the bathroom. 

Keep walking and moving after both surgeries to keep the blood and oxygen flowing. You won't be able to lift heavy things at first. You might have leakage in the beginning but wearing liners in your underwear and sleeping on towels should alleviate most worries until your pouch learns its new job. I don't need liners or towels now. Help your temporary ostomy, and later on your new pouch, by choosing your food and drinks carefully, chew everything very, very thoroughly so your pouch receives food that is already pulverized. I had one mild blockage because I ate brussel sprouts quickly without chewing carefully. The most important thing I learned, besides food choices, was to be positive. Worry when you need to, but restrict worrying time to 10 minutes, then move on. Stress ties your stomach in knots. I learned to let go of the small stuff. Best wishes to you. Let us know how you come along. Happy new year!

Hello, Autumn.

I was in hospital eight days for the first surgery, and five days for the takedown surgery. When you wake up your throat will be sore and dry. The nurses will give you ice chips but not water yet. Remember to breathe and oxygenate your blood. If you have an epidural in addition to the IV morphine pump you won't feel any pain, but be prepared that when they remove the pain management around the third day, you will feel some pain in your middle and at the incision. Your stomach muscles will be cut and you'll need help getting up. I always asked someone to crook their arm hard and I would grab hold and slowly rise. Make sure they don't relax their arm: a nursing assistant suddenly relaxed her arm and I fell back onto the bed. Don't ask. If you feel the urge to cough, and you will, brace your stomach muscles with a big book or magazine. The nurses will teach you. If they don't, ask them to show you, and really press hard when you brace. You'll see what I mean.

Are you having open surgery or laparoscopic surgery? It will make a big difference to pain management and your recovery time. Have you had your pre-admission meeting with the nurse and pain management team yet? That's when you'll learn what will happen. Go to the meeting with a list of questions and make use of their time. Before you leave the hospital after your first surgery, make sure the ostomy nurse shows you exactly how to fit the bag, how to measure it (because your stoma will change size over the next weeks) and how to ensure the seal is 100% closed all the way around so that you don't leak, which can be so upsetting the first time, and where / how to order supplies. You'll need to order ASAP when you get home because you'll go through the hospital's supplies fast (leakages, faulty seal from inexperience, etc.) and you do not want to be without supplies.

For my takedown surgery I had IV morphine but not the epidural. No food or drink allowed until you pass gas. My gas pain was very bad. Be prepared for that so that you are not surprised or worried. I was not prepared; no one told me. I hope your gas pain will not be bad. There are no meds for gas pain. When the gas pain finally passed (for me it was 15 hours), the pain stopped. Walk the halls to move the gas. As soon as you pass gas, tell your nurse. This means your bowels are awake and functioning after weeks or months of non function while you had the ostomy. Try to eat some soft protein food when they allow it. I asked for an egg salad sandwich but chicken salad or tuna salad will be okay.  Chew. Carefully. You'll pass green bile for a few days so don't be worried. Maybe some old blood. You could ask for a commode be placed next to your bed in case you need it fast. Don't be embarrassed if you mess the bed after takedown. The nurses have seen it all and they are trained. 

There is a recent post called "what to pack in your bag" or something like that. Search for it on this site and you'll find lots of suggestions on what to pack, what to do, what to else to expect in the hospital. The ostomy and the surgeries will save your life or restore it to some normalcy. No matter how painful, or difficult, just remember every day the pain will lessen, every day one thing will be unplugged or removed from you and you will be free, not tethered to machines. Then, next thing you know you'll be going home! Happy new year. 

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