Ileostomy surgery

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Regular Member

Date Joined Mar 2005
Total Posts : 455
   Posted 3/7/2010 8:10 PM (GMT -7)   
So the time has come where my doctor has told me that I should have surgery to have my entire colon removed.  I've been on pretty much every type of medicine out there. I've been on remicade, imuran, Humira, MLN0002 etc. Currently I am on 60mg of prednisone and Methotrexate.
At first I was pretty scared of the idea of the surgery and how different it would be to adapt to it. The MTX and pred is holding me over OK, but I still have to watch what I eat and the gas pain hurts a lot.
The doctors keep telling me that the "bag" is pretty easy to take care of and that I will have 10x more energy than I have now and will not have to be on my medicines anymore.
I would want to have a temporary one done, just incase I want it reconnected to go normally again. They also said they are very hideable and nobody will notice that I have one unless I pretty much tell them. I actually watched videos on youtube and I see that these things are by people's belly buttons and the bags are huge!
I guess what I am looking for is some input about the pros and cons of this surgery and what comes with it.
Are they a pain to take care of?
How do you hide it? Especially when swimming?
Also, I am worried about taking off work for 6 weeks. I do heavy lifting and I know my employer doesn't have short term disability or anything. So I am worried about how I will pay my bills since I don't have money saved up. Any suggestions would be great.

Veteran Member

Date Joined Dec 2009
Total Posts : 681
   Posted 3/7/2010 9:35 PM (GMT -7)   
In the main menu there's an ostomy forum. I'm sure they would be a great help.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

Regular Member

Date Joined Jan 2005
Total Posts : 140
   Posted 3/7/2010 10:39 PM (GMT -7)   
I had a temporary ileostomy when I was 22. It took some getting used to, but in the end I was glad to have the experience. Nobody ever noticed it, and I could eat almost anything I wanted without worry. I could go out with friends and actually enjoy myself. I felt I had more control over my body.

Some people do like to wear the big bags, but there are smaller ones. In fact, there are a lot of different options with regards to the barrier rings and the bags. You just have to find what works for you.

Hope that helps. The ostomy forum will definitely have a lot of great info.

Regular Member

Date Joined Mar 2005
Total Posts : 455
   Posted 3/8/2010 5:47 AM (GMT -7)   
Yeah i've been looking in the ostomy forum but there is a lot of different terminology and I was getting lost. Seems like everyone there is already familiar with that kind of stuff.
Anymore advice would be appreciated.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/8/2010 7:25 AM (GMT -7)   
Brian84 maybe you can explain to the ostomy forum that you are new, and would like more info in more laymens terms so that you get a better understanding.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 3/8/2010 7:52 AM (GMT -7)   
Brian~I post on the ostomy forum and like Nanners said ask questions...we'll be glad to help with the terminology:) I know it's scary!

My first ileostomy was temporary (10 years ago) and I found my life for the 3 months I had it...your doctor shouldn't have a problem with a temporary one for you...if he does, get another doc.

You'll be able to swim with it and to tell you the truth...I volunteer on a ColoRectal floor in a hospital and ostomy patients make me show them mine...because the DON'T BELIEVE I HAVE ONE :-) I wear regular clothes, too!

I hope to see you on the Ostomies Forum:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Post Edited (OHIO76) : 3/8/2010 9:15:24 AM (GMT-7)

Southern Lady
Regular Member

Date Joined Dec 2009
Total Posts : 32
   Posted 3/8/2010 7:53 AM (GMT -7)   
I worked for Hollister, Inc. the leading ostomy product supplier for 12 years. I have never had an ostomy myself but have dealt with patients with every circumstance imaginable. An illestomy is placed on the right quadrant of the abdomen and the output is more corrosive because the stool does not go through the large intestine where all the enzymes that break down the good stuff are reabsorbed. After saying all that, my main point is, pick a surgeon that has experience in doing this surgery. Placement on the stoma is very important. You do not want it on your waist( where you wear your pants) - in a fold when sitting - too close to the skin and most important you want the center or opening of the stoma to be on the top not on the side. I know that is a lot. But all these things will insure that the pouch will give you the best adherence of the pouch. And with that you can do anything.

I have met people all over the country that have lived with illeostomies and climbed mountains, ran marathons, swam in triathlons, dated and married. Nothing in your life has to change. I know it is scarry. But I hope some of this information will empower you.
humira Feb 2010
nexium 40mg
gemfibrozil 1200mg
levothyroxin 100mg
estradoil 1mg
topmmax 200mg

New Member

Date Joined Mar 2010
Total Posts : 3
   Posted 3/16/2010 10:19 PM (GMT -7)   
Hi Brian,
I just got my temporary illeostomy in November.  I'm pretty skinny and can still get away with wearing very tight clothes without anyone knowing.  Although I'm still looking forward to get my removed one day, the ostomy has given me freedom.  I'm a mother of a 3 year old and before the ostomy I would be scared to go to the park with my son, now there is absolutely no restrictions.  The bags come in different sizes, so i'll use the smaller one during the day and the bigger at night so i don't have to worry about it filling up. Also you can check out this is a website where you can purchase underwear or wraps for both males and females. I find the wraps very comfortable, i use them everyday and I also have the one for swimming.  Good luck to you, let me know if you have any questions.

Veteran Member

Date Joined Sep 2005
Total Posts : 517
   Posted 3/17/2010 6:07 AM (GMT -7)   
placement is actually above the beltline. it should not be too low, rather peristalsis works "uphill" internally (so the last part of the bowel will be internally situated to loop up to the stoma exit in the skin, and obviously there is no spinchter muscle so this flow is generally continuous. yes they can hold alot and you dont need to empty all day if you dont want to. Its life changing yes. Can i swim with it yes, but I dont since there is possible some stool at the closure, equivalent to the amount a normal person would have after a wipe if you really want to be specific. I have been in a swim suit with it but with the suit hiked up higher than normal about to cover belly button so even in swimsuit it can be covered, albeit when the swimsuit is worn slightly higher than normal. The upper part of the bag might still however, be exposed. It is completely waterproof. So there is no communication to outside air, nor would it leak into water. The attachment is adhesive and a small amount of paste is used between the stoma and adhesive to further that bond and if the bond is sound, the bag will gain the volume from gas as well as stool, so yes the bag will swell to accommodate that volume. heavy weight lifting is out, I would figure about a year before you can lift. regarding work, if you lift alot and continuously change positions consider changing your work. sweating can contribute to failure of the paste, but that would be considerable. For example if I want to reshingle my roof on hot day I can expect to change my bag as a result of sweating and movement. You basically lose the strength in your adominal muscles from surgery. This is a big deal but worth the difference if you run to the bathroom every half hour. Forget about 6 can expect a year of not being able to work, 6 months if your motivated.

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 3/17/2010 11:45 AM (GMT -7)   
Hi Brian, I too had a temporary stoma done last Jan to allow healing of resections for me it has been a horrible experience constantly had sore skin,Dehydration in the early days and the incovinience of having to do another thing in the morning. It may of been better if I had been told i might end up with an ileo after surgery and could of prepared myself I didn't even know what a stoma was! All i can say is get as much info as you can beforehand. Many people have temp stoma and have made the decision to keep it rather than get it reversed as it has given them a better quality of life Good luck to you Bev x
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

" I may not be there yet, but I'm closer than I was yesterday."

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