Facing Major Surgery on Tuesday, Seeking Support and Advice

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 illeostomy. 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 in side. I will be in about two weeks and the recovery should be 4-6 weeks there after.  If anyone else has had this type of surgery or any thing 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 intereseted in any posts ....

Rach xx

surgery is d easy part recovering is painfull lots of puking stomach pains worse 8 days of my life. but u 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 hospitilizations or major problems since then.  Drink plenty to stay hydrated and have a nephrologists keep a close eye on your kidneys.  I suffered greatly prior to this final surgery and had 12 hopitilizations.  Like I said none since.   Good LUck.  You will have a long but satisfying recovery.  When you get home my advise 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.

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How to Stay Hydrated with an Ostomy with Collin | Hollister

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 ilesotomy surgery over 24 years ago & have had no major problems since.  Life is good.  I'm sure you will do just fine.  Good luck to you & hang in there.

Hi Sharon,



I've only had the one op for the ileostomy (Dec 09), so my recovery from 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 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, Im 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 empting) 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 adhese 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 of asked the Doc. 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. 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 removes 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 they did as they said they would. I woke up so sore as to be expected. While in the hospital I developed an absess so had to get a drainage tube place in nonother than my butt cheek so sitting down was quite uncomfortable, the placing of the tube is a whole story by itself, bleh! I also developted a mild phneumonia, 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 revoery time there after 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 ful ltiem job I'd suggest gonig 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 a 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 ours 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 I 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 pluracy ( 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 anti-coagulants. Thought things were going ok, then I began spitting up 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 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 anti coagulants 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 some time this week.  



Maryland Gal

Good luck -- ask for the wrap over the reamining areas to protect you from adhesions. You will be so much better off with the iliostomy 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 Drs 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 morre 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 realy 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 thru 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 dnt 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 sceptic 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 ok if we take care of ourselves first. 

Thank you, charK63