Ileostomy surgery - Pain and recovery time?

Is there anyone who can tell me about ileostomy? I have colonoscopy (stoma from my large intestine). Now the surgeon is taking out the rest of my large intestine and portions of the small intestine. He said that the stoma will be on the other side of my body and higher up. Do you know if this surgery will be painful and what is the recovery time? I am having the surgery done in Rochester, MN at Mayo. I am very nervous for Monday. Could you please inform me on this information? Thank you!

I had similar surgery where my colostomy, as a result of a blocked colon (diverticulitis), was changed over to an ileostomy after my large colon was removed. I did not have to relocate the stoma, and as a result, I have a rather large stoma for an ileostomy. The advantage to this is no blockages.

Let's not kid ourselves here. This surgery was extremely painful and debilitating, and recovery was 2 weeks in the hospital and about 6 months at home, the first 2 being the worst. Now, 2 years later, I am healed and almost back to normal, if having an ileostomy is normal.

Output to the ileostomy is more frequent and not as solid as it was to my colostomy. However, other than corn, I eat pretty much what I want. I take LOMOTIL to reduce the speed of my output and eat thick Greek yogurt and marshmallows to slow things down as well.

Assuming you have a half-decent surgeon, you should be fine, but expect to be out of commission for a while. Good luck and all the best. You can get through this, but it is going to be tough.

Mike

Thank you YVRMike! I so appreciate your openness and honesty. I am just stunned that you all take the time to share with a scared stranger. I can't thank you enough. Any suggestions help, and open to hear them all too! Thank you again, Mark

I had an ileostomy in Sept 2012 and it took me 6 months to get back on my feet "to be normalish". It's now 9 and a half months later and I cycle to work now, and I feel great.

Hi Polo, just thought I would add a few words of encouragement. First off, you are going to be at the Mayo Clinic. I expect you will be in pretty good hands as they have an excellent reputation. The first few days out of surgery will be a bit rough. I had a spinal, and I would recommend it as it permits faster pain medication delivery. Your hospital stay will depend on the length of time it takes to get your ileostomy pumping. You will gradually increase the food content and it will move from liquid to soft solids. I would say 10-14 days. You will be uncomfortable for 2-3 months, but if you have a positive attitude, you will be up and getting out on your own within 6 weeks of surgery. I had my ileostomy on July 30 and was sailing solo by the third week of September back in 2009. Yes, you will have to take it easy for several months and be certain to follow the doctors' feeding instructions, especially over the first 6 months. Your body has to heal, and you do NOT want to chance a hernia, so don't lift heavy items, eat light to avoid bowel blockages, and keep yourself well hydrated. Finally, a positive attitude will determine how long and how well you pull through. Colitis took my bowel, the ileostomy gave me my life. God gave a surgeon the skill, and me the will to accept the circumstances and the gift. The same will happen to you. Good luck, grit your teeth, and in a few months it will be in the rearview mirror!

My Ostomy Journey: LeeAnne | Hollister

Thank you, Scotiaman. You all have the same story. I feel that my attitude is positive, I am just really nervous since the date of the surgery is getting closer. My first surgery (due to Crohn's) took my rectum and most of my colon and stitched up the anus. I thought that was very painful and a hard recovery. Now this... It hasn't been two years yet and another surgery. I just want to be healthy again and get my life back. I pray a lot that I have my God close by me and guide me through all I face, so I am not alone. God answered with your email. Thank you so kindly, POLO

Hi... My name is Marsha, and I read your posts and the replies. Scotiaman said it best... follow directions, take it slowly, introduce new foods gradually, and drink plenty of water..

I never did have a colostomy, but had my ileostomy done when I was 15, and that was 50 years ago... A few years later, they took out my rectum/anus and closed me up.

The only difference between an ileostomy and a colostomy is where the opening is made...

The colostomy is an opening somewhere in the large intestine.... and the stoma fashioned on the abdominal wall will be larger because the colon is larger. The large intestine absorbs more fluids, so the output is thicker and more formed. The less large intestine you have, the more liquid the output...

With an ileostomy, the entire large intestine is removed, and the stoma is smaller. The output will be more liquid, but that's determined by what you eat and how much liquid you consume... The more the better.... to avoid blockages. Just be careful with fibrous foods, salad, nuts, etc... to see what agrees with you and what doesn't.

The difficult part has already been done... taking out the rectum. That was painful and took a long time to heal. You're having this done at a reputable place, so if all goes well, you should be up and around in a few days and out of the hospital in a few weeks. Don't rush the recovery.... because so much of the surgery is internal. You don't want to hurt yourself.... or get a hernia.... It takes time to heal.

Managing an ileostomy is a trial and error experience. The ileostomy flows all the time.... so you need to find a system that works for you. I use the two-piece Convatec and get about a week's wear out of the flange and the pouch..... If I'm in the pool a lot or in a hot tub in the summer, I may need to change more often. Back when I had my surgery.... we didn't have stoma therapists or nurses to help.. Today... help is out there, and you don't have to do it alone. Best of luck. We're all here for you if you need us.

Marsha

Dear Marsha, wow, thank you so much. You don't know how nervous I am today and scared. I really will take your advice and many others. It's been an awesome experience to find this website. I am not sure who or where else to ask these questions to. Part of me is so embarrassed of the bag, that my social life is so housebound. I am nervous for the liquid output. I seem to have issues with my bag at night. A nurse told me not to eat before I go to bed. It helped a little, but I still don't have a regular schedule. So I hope I will learn as I go. I agree with you, when the removal of my rectum and anus, it was the most painful experience I have ever had. Though, it is great how our minds heal the pain. With time, it slowly goes away and don't recall as bad as it was until I really think about it. Thank you again Marsha, Mark.

Hi, Polo. I'm older (62 years), but I had a colostomy done in 2008, and then last fall, Sept 26, I had to have an ileostomy. I have Hirschsprung's Disease and had developed a megacolon. That means it was so large and out of shape that nothing would move through it.

My ileostomy surgery was harder than my colostomy surgery, but mainly because I developed an ileus. Just make sure the doctors are sure your small intestine is working before they release you from the hospital. My small intestine became paralyzed and therefore nothing would move through so it all started coming up through vomiting. As long as the doctors monitor this and be sure your intestine is working--and you take it very slowly with introducing food, you will be good.

It has been a long recovery--but it has happened slowly and surely. When you're younger--it will likely happen faster and you will regain your energy and ability to get on with your life.

The last months were hard--but I lived through it and am adapting to the ileostomy. Actually, my output is easier for me to manage as I am no longer constipated for the first time in my whole life. The most difficult part is finding a convenient time to change as I need to do this when I haven't eaten for several hours. If I don't have a leak and can change on a regular schedule, I do this first thing in the morning before I eat anything and it is easier to get a dry surface for the flange to stick to. The ileostomy tends to have constant output so it's harder to get it dry. Get lots of help and advice from your WOCN nurse (wound ostomy care nurse). They're THE best!!!

Good luck--and a prayer is said for you to have an easy time with surgery and a quick recovery and a much better life!!

Holly

Thanks, Holly! I am taking in all this information and praying I make it through it with faith. It is a trying time (as you know). I have so much to be thankful for, and I have to think in those terms. Thankful for people like yourself that give me support, understanding, and prayers. Polo

Polo, I have wondered how you did after your surgery this summer. When you have time, please give us an update!! Prayers that all is going well and that you have adjusted to your stoma and that you're recovering nicely from the trauma of surgery!! Take care! Holly

Hello. Recovery all depends on your condition prior to the surgery. I have an ileostomy for a little over a year. I went back to work full time after eight weeks. I had been very sick prior to my surgery and had lost 70 pounds and needed two blood transfusions, so I was pretty weak.

An ileostomy produces a more liquid and more constant output than a colostomy. You will need to drink plenty of fluids to stay hydrated. I was told 2 liters per day and still stick to that.

I did have some pain following the surgery but it didn't last all that long (maybe two weeks). It was more "discomfort" than pain that second week.

You are in good hands - make sure and ask a lot of questions regarding recovery, diet, and activity before leaving the hospital. Also, see a WOCN if you can to help you manage your pouch.

Best wishes, Marisa