Seeking Advice: Dealing with Post-Surgery Fatigue and Accessory Challenges

Aug 18, 2011 7:36 pm

I feel so fortunate to have found this site! I am amazed by the support and information. I am new here, and in the process of recovering from surgery. I was hospitalized and diagnosed with C-Diff last July 2010, and was given prednisone in large doses. I had major prednisone withdrawal issues but was getting better and dealing with liver disease stuff when I started having lots of pain. Although I had UC and took meds, it rarely bothered me. On May 11, 2011, debilitating pain caused me to go to the ER where I learned I needed life-saving emergency surgery to remove my colon because of free air due to perforation in colon. I was hospitalized for six weeks after the surgery, due to staff infection and then found out I had diabetes due to the steroids so I had to learn about insulin/diabetes management. I had been so positive, grateful, and hopeful initially. Did my own wound care, blood sugar monitoring, and insulin shots, and ostomy stuff. I even named my stoma Lola because Lola certainly gets what she wants...

In the last month, I have been super exhausted (can't just rest on the couch, need to sleep during the day - most of the day), and fearful that my body seems so fragile, and about whether I will ever be strong enough to get on my surfboard and get in the water or hit the slopes, or camp! Angry and tired of dealing with the accessory!

I would really like to hear how you have made it through post-surgery issues of fatigue/exhaustion/frustration/fear. Has anyone else hit this wall at 3 months post-surgery? All doctors, blood tests, X-rays, MRI say my healing is on course and things look normal. I stopped prednisone about 3 weeks ago and am almost weaned off the insulin so these may be reasons I am exhausted. Having pain too in abdomen, like I did 100 sit-ups and my core/back muscles are sore. Also need tips and tricks for the best accessory for swimming, hot tub (is it possible?). Any wetsuit issues? I am thinking I may have to take up stand-up paddleboarding instead of surfing.

Thanks for any feedback.

Past Member
Aug 18, 2011 9:37 pm

Hi there Suzanne, and welcome to the site. Gosh, you've done well to come this far so quickly. Well done! Had a similar situation myself with a perforated colon in February and underwent similar surgery, and am now the happy owner of a new stoma called Motsa. Yep, have been there and got the t-shirt with the whole tiredness issue...don't worry, it'll come back. Yesterday was my first day in almost a year to put on a wetsuit, but only to do some sea kayaking. Was out for over an hour and had no problem at all with Motsa....just a bit of a job to fit him in in the first place. Well done again, girl, and may your recovery speed up and see you back on your board very soon. Take care, Colm

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Aug 18, 2011 10:31 pm

My guess is that the prednisone is still in your system causing you some grief. I took it for a couple of years at a low dose and it made me borderline diabetic and caused me horrible fatigue that didn't go away until months after I had quit taking it. There is light at the end of the tunnel. It just takes a bit of time to adjust. Best wishes. KBD

Aug 18, 2011 11:16 pm

Based on what I've read here and in your profile, you seem like a very motivated, positive person who is understandably down due to the tough time you are going through and uncertainty about being able to participate in activities that bring true joy to your life. We've all been there and it sucks, but things get back to normal. There is so much I could say right here, but I will just encourage you to keep the faith. You are only three months out from surgery. It took me six months from my last surgery to start to get things figured out, and now I'm back to racing triathlons. This coming winter I'll be skiing for sure. I see no reason why you couldn't surf. With regard to swimming, my thoughts are that whatever pouching system you are using successfully out of the water will work fine in the water. I frame my flange with waterproof tape, but mostly just for peace of mind. Like Dandare, I have had no issues with the wetsuit. Cheers, Dave

Aug 19, 2011 12:28 am

Hi there. Your positive, can-do attitude is going to get you through this in no time. I have had a permanent colostomy for 7 years. I love the water and found that I do not need to use any special appliances or precautions to hot tub, snorkel, or swim. I do use a pouch without a filter, but otherwise no change in the system I use (Esteem Synergy by ConvaTec). It does not seem to affect wear time either. I just returned from a month swimming and doing jungle tours in Belize. I really haven't had to alter my lifestyle at all because of my ostomy. Originally, that was my fear - that I would have to give up my active lifestyle - not so!

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Aug 19, 2011 6:36 am

Hi, welcome to the only place to be!!! The people on here will give you loads of support and you'll feel better soon. I'm not quite at the 3 months stage yet but I can certainly relate to feeling down and tired and confused. Stay positive and you'll get there. Unfortunately, I think the medication they gave us stays with us for some time. I wish you all the best. Mrs. O xx

Past Member
Aug 19, 2011 3:31 pm

Hang in there. You have been through a lot. Give yourself time. You will be okay. You are strong. Good luck.

Aug 20, 2011 11:25 am

Hey darlz, you are only 3 months post-op... Sorry, but time is the only thing you have to wait for. I don't see why you can't surf still. Maybe get on a site and type in "stoma surfing". I'm sure there is an Aussie surfer. We are everywhere, hahahah! Can't get rid of us. We are the CHAMPIONS! LOL. You will get better, as it's been said, time, matey. Take care. Would love to catch you all in the general chat room. It's free. xxxx (Kuda) mooza xxxxxxx

Past Member
Aug 22, 2011 4:51 pm
Hey Suzanne, I go surfing all the time. Richard
Aug 22, 2011 6:52 pm

Just had my first surf after surgery. My stoma is prolapsed (it hangs out about 2") so it's a little tricky, but I made a stoma guard that did the trick. It keeps the stoma from getting squished when I'm paddling out and also holds the wetsuit off it. That might not be an issue if your stoma is flush. I also use the guard when I want to wear boardies and pants over the stoma without pressing on it. With the guard, boardies, and a rash vest, you don't really notice the appliance and stoma. Once I refine the guard a little, I might offer it to people as the ones I've run across aren't great. As for swimming/hot tubs/etc., there isn't much of an issue except a little reduced wear time (still get several days though). I use Hollister New Image, and it works well and is nice and flexible for sports. Surfing is a bit rough on the belly, so you might want to wait until the area has healed completely before heading out.

Past Member
Aug 23, 2011 1:38 am

Suzanne, I had C-diff several months ago after treating a sinus infection. Ended up in the hospital, tons of meds plus steroids and on insulin. I was just celebrating my one yr. anniversary with my colostomy with all of this. It does take awhile after you discontinue the steroid for your system to return to normal. I hated being on them and they made me feel very strange. It will get better. Keep drinking to flush your system. Also, I have a pool and love to swim. I use a 2-piece system from Hollister and love it. I'm in the pool for hours and only change my wafer every five days or so. Just depends. You will start to feel better and get your strength back more each day. Eat a balanced diet and rest up.

Aug 23, 2011 3:35 pm

Suzanne, I also had a colostomy last Nov 2010 due to cancer. I also lead a very active life and have 3 small children. What really helped me when swimming is using the swim wrap from Ostomysecrets. You could try logging in to their site. I also use their classic wrap for daily wear; it flattens my tummy and the stoma bag is not noticeable. This is a lifesaver for me, and no one from where I work knows that I have a colostomy because of this underwear. Please try it... Take care.

Aug 23, 2011 3:49 pm

I am much older than you and was very weak after my emergency surgery for a ruptured colon in July 2009. My heart stopped during the operation and I died for a few minutes. On leaving the hospital 2 months later, I could not even walk more than 2 or 3 steps. Now it is summer 2011 and I am much stronger. I have a large garden and have just cut some huge hedges from the top of a high stepladder. I have also dug a whole vegetable garden. It is amazing how bodies can recover. Don't give up hope!