Speeding Up Recovery After Ileostomy Surgery

I just had an ileostomy due to a failed J-pouch. I'm 2 weeks out. Sorry, I have no patience, but I'm just so tired. Beyond tired, I just want to get back to life again. How long is a recovery? And what can I do to speed things up?

I was in a similar situation, Susan, 5 years ago when they removed my J-Pouch because of pre-cancerous tissues. I was in my upper 60's and easily managed to get back to most of my normal routines within a month. To speed up recovery, walk a lot. Also, stay well hydrated and absolutely avoid heavy lifting. Good luck!

PB

Hi Susan,

I'm 8 weeks out today from my ileostomy, and it was due to a perforation in my BCIR pouch, and I was septic. I know how you feel right now as I felt the same just a few weeks ago. I would say the same as Primeboy said: walking, hydration, and no heavy lifting. I would also make sure you get plenty of rest.

During my hospital stay, they had me on so many antibiotics that by the time I got home, I had the beginnings of thrush and I had diarrhea. I took Imodium for the diarrhea, got myself a good probiotic, and started taking a tablespoon of coconut oil a couple of times a day. That stuff works wonders! I also ordered a good liquid multivitamin and minerals. Those are the things I did to help my body recover. I also take Collagen Hydrolysate; it's in the form of water-soluble gelatin. It's pure protein and is easily digested in our sensitive digestive tracts and helps the body rebuild.

You will start to feel better soon.

You already have two very knowledgeable answers from two I enjoy hearing from....I can add that resting with something you like to do will help you relax and heal faster -- for me it is knitting, reading, designing glass panels or designing quilts which are all easy while sitting or reclining. I really had to get to where I was mentally engaged in non-body processes. It is a good habit and will get you over the bumps in life. I wish you well and I also know even a week more will have you feeling better -- as the old saying goes, Rome wasn't built in a day!!

Hey Susan, I second Ewesful's comments and would just like to add a bit.  Like PB suggests, walking is a wonderful healer.  After you get back to 100%, continue walking 4, 5 or 6 times a week.  Even 15 minutes at a pretty good pace is invaluable.

Keeping in touch with the many wise, caring people here can also help, big time.  

Wish you the best, quickly.

Mike

Words of Encouragement from Ostomy Advocates I Hollister

Thank you, Mike,

Actually, I try walking 15 minutes at least twice a day and I walk around my house in between and try to do little things until I collapse at around 4, my bewitching hour. I'm actually a gym rat, so all of this is very distressing for me right now.

Between this and the leaks, ugh!

Hi Susan,

I'm Marsha, and although I've had my ileostomy for more than 50 years (since I was 15), I know how you feel about fatigue. I'm going to reiterate what everyone else has said.....you're doing great, be patient with yourself, it takes time to recover....and this is the time to really pamper yourself. Give yourself credit for doing what you can, and doing just a little more when you're up to it. I think doctors sometimes minimize the after effects of surgery recovery. I needed to have bacterial kidney stones removed last year...and was told it was usually a "same day" procedure. But because of my history, I'd be staying over for one or two nights. But there were complications...

First with intubating me. My throat swelled up, and I was on a breathing tube for 4 days, awake! It was awful! They used the wrong tape, and I had a skin infection surrounding the wound that itched, burned and also got infected. I had a kidney infection from the stones, that became a bladder infection, and then a vaginal infection. Unrelated, I broke a tooth, into the gum, and I wasn't well enough to get to the dentist, so my gum got infected too. I was on antibiotics for months.... It took me nearly a year to recover from the infections, the trauma of feeling like I was suffocating (when the tube got clogged) and that led to nightmares, and to a form of PTSD. I had trouble sleeping at night, so my days and nights were mixed up for months. I was out of step with the world, and thought it would never get better. But it did. My mantra has become, bad times don't last forever....even though it feels like they do. One day at a time...even if it takes a year. You can read my recent post of being overwhelmed by (non-medical) real-life issues. I sometimes forget that you can't really speed up the recovery process, physical or emotional. You can only do what you can do.

BTW, I'm in central NJ, so we're practically neighbors. Best of luck to you...and to all the other new Ostomates out there.

Marsha

Hi Susan.

I hope you don't mind me jumping in on this post. It's a few months later now in October. I hope you are recovering fast and feeling better than when you posted this.

I actually have a few questions for Marlene that I would be very interested in talking with you. I have a BCIR as well for 3 years and 3 months now. I would say I was great the 1st 2 years after my surgery from the BCIR. I had my 1st surgery in January 2003 to have a Brooke ileostomy due to undiagnosed, the GI doctors left me in the category of having symptoms from both Crohn's disease and also Ulcerative colitis. Now for the rest of the time I have been having complications. I was diagnosed a few times with pouchitis. I then had a scope performed and my new GI doctor informed me that the Crohn's came back. I was so confused because at this time I believed I had UC.

I had a blood test performed before I went to Florida for the BCIR surgery that the results came back as me having UC not Crohn's. Since then I have tried so many different medications from Enbrel, Humira, Remicade, and now I'm taking Entyvio. Now since August-September of this year I have been hospitalized 3 times. I was also on Cipro for a month to treat pouchitis again. I am having very loose stool, vomiting, nausea, poor appetite. I have been trying my hardest to stay hydrated, drinking Gatorade with added salt in it per GI. Prednisone, heartburn pills, meds to slow my bowels.

For some reason I'm having issues staying hydrated and losing sodium. I stay in the hospital a few days and then I feel better connected to the IV fluids. I'm released from the hospital I feel ok a few days then things go back with the nausea, vomiting, etc. I have now been trying to avoid staying in the hospital and have gone for outpatient IV fluids.

My GI doctor thinks it is the BCIR pouch causing these symptoms and thinks it would be best to have it removed and go back to the Brooke ileostomy. I also have consulted with a GI surgeon and he is not sure if the pouch is the problem and is not sure if he does the surgery if it will make a difference. The surgeon also advised me about short gut syndrome because of the amount of small intestine they used to create the BCIR. Those are the only 2 surgeries I have had. My 1st surgery my entire large intestine was removed.

I was wondering since you have had the surgery to revert back to the Brooke ileostomy if you have developed short gut syndrome?

Also, how are you doing now that you have had the surgery? Any information you have on this would be greatly appreciated.

I'm confused on what to do from here. We are trying different meds and waiting to see if things turn around, but I will have to make the decision to have the surgery or not. I see my GI doctor on 11/3 and have also had a second GI get involved to see if there is anything I could be doing and to have fresh eyes on my condition.

Thank you for taking the time to read this and again I would really like to chat with you.

Nicole

Hi, I'm so sorry that you are going through this. It sounds very similar to why I had to have my jpouch diverted. Pouchitis can make you very sick. In fact, after 3 months, I'm not doing all that better and was found to still have inflammation in the diverted pouch. I am waiting for approval for Entyvio. It sure sucks big time. I have not had the pouch removed and I am hoping that Entyvio will put me in remission to get hooked up again. It does take a while to work. I feel for you because I was sick like you when this all started. Maybe they can do a temporary ileo until you heal. My nerves are totally shot. Feel free to contact me anytime.

Hi Nicole, I am sending you a private message....

Nicole, how are you doing now? So much of your story sounds like mine.