Having surgery on Tuesday, need support

Hey, I have posted before, but have not received any response. I will be having surgery to remove my large intestines. I already have a colostomy, but they will be converting it to an ileostomy. Due to the fact I have no motility along with a stricture and part of my bowel has a right angle, they said I have been on TPN long enough and have every test and conservative measure possible. I am very afraid because I have so many other abdominal operations. They say it will take 6-8 hours and there is a lot to clean up inside. I will be in about two weeks and the recovery should be 4-6 weeks thereafter. If anyone else has had this type of surgery or anything close, please let me know what to expect.

Thanks,
Sharon

Hi. I also had a colostomy converted to an ileostomy. The surgery/recovery to me was very similar to the first one (the colostomy). There was more pain because they closed the colostomy on the left side of my stomach and the ileostomy was created on the right side. I was scared too, so I know how you feel. Just be prepared for the surgical pain and getting used to the difference between the colostomy and your new ileostomy. I will be thinking of you! Let me know how you do : )

Hi, there is a possibility I may have to have a similar op too, so would also be interested in any posts ....
Rach xx

Surgery is the easy part. Recovering is painful. Lots of puking, stomach pains. Worse 8 days of my life. But you will feel way better at home.

Hi, I had 6 different abdominal surgeries before having the rest of my colon and rectum removed. I was very weak going in but I made it. It has taken me over a year and a half to rebound back to 1/2 of what I was. But I feel lucky to be alive and have had no hospitalizations or major problems since then. Drink plenty to stay hydrated and have a nephrologist keep a close eye on your kidneys. I suffered greatly prior to this final surgery and had 12 hospitalizations. Like I said, none since. Good luck. You will have a long but satisfying recovery. When you get home, my advice is to sample, sample, sample different pouches and wafers. I have a flat stoma and wish my doctor had made more of an effort to have it protrude. Remember, you are the boss. Good luck. Keep in touch.

Hi Sharon,
Well, my friend, I wish you the best. There is a lot of help out there for you. We all have gone through this, so who is best to help you but us? I had my ileostomy surgery over 24 years ago and have had no major problems since. Life is good. I'm sure you will do just fine. Good luck to you and hang in there.

Hi Sharon,

I've only had the one operation for the ileostomy (Dec 09), so my recovery from it was much quicker/easier.

I agree with Bear ... talk to the surgeon and confirm that he will do an 'outie' protruding stoma. They are so much easier to deal with for an ileo. The output is very watery and having the protrusion helps the output clear the flange. Plus, it's just easier to accommodate different appliances.

Take heart and we'll be thinking of you. Let us know how you are doing when you are able.

Beatrice

Hi, I'm an ileostomy after several resections... I had a worse time in recovery than most due to MRSA. Almost 1 year for incision to close, I am lucky to have a protruding stoma. My output is watery to thick, after over 2 years. I use 1-piece drainable pouches and NA'Scent for odor (it squirts into pouch after emptying). That allows me to eat almost everything (including seafood) which causes odor with every other deodorant I have tried. My only issues are that my skin is sensitive around the stoma and is often "weepy" which makes it hard to adhere another pouch. I have also bumped my stoma (hard) causing a bleed. But all in all, I am better off with this surgery. I do wish I would have asked the doctor to place stoma further to the right from mid-line to allow my wearing "normal" pants with zippers. I now wear Yoga-type pants because my stoma is closer to navel. I hope you have a good recovery. We are all different and it is interesting to have so many points of view. Remember, chew chew chew and you should be ok... lex

I think I'm a bit late in reading and replying to this, but here goes anyways. Oct 2008, I had my first surgery EVER, and it was a colostomy. It made my life livable again. Feb 2010, I had my second surgery converting the colostomy into an ileostomy, removing all of my colon, but leaving the rectal stump (they said it would be less painful to do it that way than to remove it all and sew up the anus). Man alive, I went in thinking it was going to be like my first surgery and I'd be in the hospital for a week or less. My first time, I was in 5 days, feeling fine 2 weeks after. My second time, I went in, and they did as they said they would. I woke up so sore as to be expected. While in the hospital, I developed an abscess, so I had to get a drainage tube placed in none other than my butt cheek, so sitting down was quite uncomfortable. The placing of the tube is a whole story by itself, bleh! I also developed a mild pneumonia, which I had never had in my life until then. My stay in the hospital because of those added factors was close to 2 weeks. My recovery time thereafter also took time. I was out of work all of February and half of March. I went back to work full time, and that was a mistake. I was so beyond winded by the time I left my first day. Looking back, I'm glad I threw myself back into it though. If you work a full-time job, I'd suggest going back half days if they will let you, at least for the first week so you can readjust to everything.

I hope your surgery went well, and you are on your way to a speedy recovery.

Best wishes!

Hello everyone who has been thinking and praying for me during my conversion of my colostomy to an ileostomy. The surgery itself went very well. 7 hours long. A lot of adhesions to remove and just had previous complications that made it even harder. The surgeon was great. If anyone is from Maryland and needs a G.I. Surgeon let me know. I can give you his name.

All was well until the weekend before I was to be discharged. Three days after surgery, I had pain when breathing and found out I had a lower collapsed lung and pleurisy (spelling)? Then my O2 levels were very low, so they thought I had a clot in my lung or somewhere. I ended up with one in my left calf. I was put on anticoagulants. Thought things were going ok, then I began spitting up a lot of blood and was rushed to the ICU. Had to have 4 pints replaced and a scope to find out what caused the bleed. It was an ulcer. (Wow, a little thing like that causing me to almost bleed out. Who would know?) They kept me in ICU for three days, then went back to the room. Was doing ok. Ileostomy working fine, but still on liquids because I was on TPN so long. The day I was to leave (almost 3 weeks at this point now), I started bleeding again (no anticoagulants this time). Same thing ICU, scope, another ulcer. I am now back in a regular room and am waiting to find out what is causing these and to see when I go home. If it were not for the other complications, I would already be home and I believe truly feeling pretty good. Like I said, the surgeon and his team along with the other teams, pain, nurses, etc. were great. Thanks for all your prayers and support. I hope to be home sometime this week.

Maryland Gal

Good luck - ask for the wrap over the remaining areas to protect you from adhesions. You will be so much better off with the ileostomy bag. There are so many positives. You will want the outie - it is easy to deal with. I think my very worst part was getting past the skin reactions to the adhesives - once done - the rest is a snap.

Once I was really healed, my doctors and nutritionist basically said - You can eat whatever you want but you have to remember the way it makes you feel = sample and watch - if you like the result, then keep sampling until it is on your "I like list" - my food issues are a bit more complicated because I don't have a lot of organs that digest now as I have FAP.

I did not think recovery was so painful, but it is tedious if you are a really active person. I am 7 1/2 months out and actually celebrating "new normal" - Whatever you do, enter it with a decision to make the most of it and pray for the gift within your surgeon. I also bet he/she can clean up a lot of scar tissue etc. and help you to be a new happy you. I'll be praying for you.

Dear Maryland Gal, you have certainly been through hell and I am truly sorry for you.

I only had a colostomy (only) and I'm 3 months out of reversal surgery. I was warned I may wake up with an ilio if my surgeon wasn't confident of the repair but I don't even know what all that means because I chose to have a positive attitude.

What I want to contribute to the discussion is that I think they are severely mistaken in regards to recovery time.

My first surgery was a burst bowel that was septic so there was a lot of handling of internal organs during surgery. I was 2 months along before I came home and God bless the home nurses who came for at least another 2 months.

My 2nd was scheduled and there was no rehab facility or home healthcare and I was left to tend the house by myself for me and my mother. I only lasted an hour and a half at a time without needing a long rest period. 8 weeks recovery for deep organ surgery is not feasible in my opinion even for limited return to work. I was even accused of faking it and trying to get help because I was lazy.

Firstly, they know I'm not lazy and prefer not to be waited on, but I chose to listen to my body and if I was breathless, nauseous, and feeling weak, I laid down and took as long as I needed. Work will always need to be done but it can wait.

Your surgery and problems are so extensive I want you to give yourself time. You probably remember not even knowing where your pain came from, it just hurt. You don't want to cause more damage.

I myself just took my first trip this last weekend to see the ocean and it was so great and I felt so good. Now I'm fixing all around the house that was left out of order. It will get done then something else will come up. Who knows? Fire, hurricane, whatever, we will be okay if we take care of ourselves first.

Thank you, charK63