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Colostomy vs Ileostomy

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Posted: Wed Apr 05, 2017 5:10 pm

Looking for feedback from those who have ileostomies and especially anyone who had a colostomy that was changed to an ileostomy.

A little over 6 years ago I got a permanent colostomy. But now my gastro doctor said because of a bad stricture and polops in my bowel he is recommending to my colon surgeon that it be made into an ileostomy with most of my bowel removed--right now I have about 40% of my bowel left.

Questions:

Anything in particular, any suggestions or ideas you have that will help me adjust to an ileostomy?

In particular I also want to know:

Am I likely to lose weight with more of my bowel removed?

Will the ileostomy be less noisy, less gassey, than the colostomy?

Will I have trouble with medication, pills, not fully digesting with less bowel?

Will I have more skin issues, leaking and such with the ileostomy?

I have Crohn's Disease with no signs of the disease in my small bowel. By getting rid of most of my large bowel am I less likely to have Crohn's issues in the future?

Anything else I should know?

Much thanks for your thoughts and feedback!

Edit/Update:

Today marks 5 weeks since my ileostomy surgery. Will answer a few of my own questions from above in case anyone is interested in my experience now with both a colostomy and an ileostomy.

Weight loss: I lost 7 pounds during my first week after surgery and an additional 7 pounds in the two weeks following for 14 pounds total. Most of this was due to terrible nausea after my surgery. But even now at 5 weeks I am still 12 pounds lighter after my surgery. I don't expect to gain more than a couple more pounds because my gut is more sensitive to what I eat now than when I had the colostomy.

Ileostomy noise: at times it has been worse than with the colostomy. I think it is more touchy about certain foods now, but when I am very careful about what I eat I would say it does not create more noise.

Medication: timed release medications are definitely out. Everything moves through my system much faster because of no colon.

Length of wear time for appliance: I can go 5 days with some leaking next to the stoma. 4 days is probably ideal. I went 5 days with the colostomy with a tiny amount of leaking onto the skin next to the stoma. So I'm not talking about leaking outside of the wafer. Probably the ileostomy gets about 1 day less wear overall compared to the colostomy.

Crohn's Disease: the surgeon and I are hopeful that the Crohn's Disease will no longer plague me since scans of my small bowel showed no damage and the Crohn's appeared limited to the large bowel. There is no guarrantee and time will tell.

Other observations: on the positive side the bag is much easier to empty/clean with the watery output compared to the colostomy. Yet I'm emptying the bag almost twice as much. Learning to adjust to my bag being on my left side compared to the right side with my colostomy has been a big adjustment, bigger than I would have imagined. During my first week home I caught my stoma on a door latch as I was leaving a room and had some serious bleeding for awhile. I'm still adjusting to the stoma being on the opposite side. Yet being right handed I think it will be an advantage having the stoma on the left. Water/Fluids is a huge deal. With the colostomy I was drinking lots of fluids, but drinking much more now and constantly waking up being dried out at night and having to keep at least two bottles of water by my bed. I have also noticed that medications can get more concentrated in your system if you are not drinking enough water. Hydration is one of the biggest issues so far. My gut seems more sensitive to foods now, and nausea still creeps up on me at times. That may disappear over time or it may be a symptom of a more sensitive gut. 

Ileostomy better or worse than a Colostomy?

In my particular case the ileostomy will prove much better if it keeps me free of Crohn's. Yet there is no doubt you are generally better off with a colostomy than an ileostomy. My salt levels have gotten very low, and I had to have a magnesium infusion. I begin the day now drinking gatorade. Loss of electrolytes is a huge deal with the ileostomy. I never worried about that with the colostomy. I wore an ostomy belt with my colostomy. With the ileostomy I have no idea how one can avoid wearing an ostomy belt. That mostly fluid output from an ileostomy puts huge pressure on the skin and area around the ostomy. Of course we have no choice in whether we get an ileostomy or colostomy, but there are notable differences.



Last edited by kbd on Mon Jun 05, 2017 11:41 am; edited 1 time in total
Posted: Thu Apr 06, 2017 10:06 pm

You will adapt just fine, I find that with them leaving more hanging out than the colostomy that I have less leaks and less trama to my skin around it. Losing weight I wish but no I have gained and I am not happy with that at all as I was 110 and since my last surgery Jan 30th 2017 I have gained to 141. I have way less gas, hardly ever does it make any noise. You will have to empty quit often. Every thing will digest just fine but every thing for me goes straight out. I am not sure about your Crohns because they treated me for Crohns for 9 years then my surgen said I did not have crohns I had dead bowl so I don't know. I hope this was of some help, if anything else just hit me up I am new here and looking for answers just like you are.........

Good Luck

Angel Primiano

firefighterangel

Posted: Fri Apr 07, 2017 11:15 am

Thanks firefighterangel!

That is interesting about leaving the stoma out farther. That would be helpful. My colostomy stoma only sticks out about a half inch or so. And good to know there is less gas and it is quieter. I suspected that but was not sure about it. Emptying more will be a slight adjustment. I probably empty about 4-5 times a day right now.

Thanks for sharing your thoughts and experiences!

Posted: Mon Apr 10, 2017 12:37 pm

Hi there kbd ... I cannot speak to having a colostomy as I have always had an ileostomy.  I actually only empty my bag a few times a day but first let me answer your questions: 

As far as weight loss -- Oh how I wish LOL  just like firefighterangel, I have gained weight.  However that is probably due to the fact that before I had my surgery I basically could not eat much at all because of severe ulcerative colitis with strictures.  Now I can eat -- no pain but weight gain.  I definitely am not complaining though!  

As far as less noisy or less gassy -- that will depend basically on what you eat as that is what gives you gas.  I know my ileo (Sheldon) was much noisier when I first got him ... now he is quiet except for first thing in the morning and of course if he makes noise during the night i do not know about it.  I do tend to have more gas output at night so I am sure he is making noise I just sleep through. 

As far as medication ... well, watch carefully as far as what may appear in your bag.  Timed release medications or some coated medications may go right through and not dissolve.  You can always check with your WOCN or surgeon or his PA or wherever you get your info but that is something to watch out for.  

I have absolutely no leaking or skin issues but I also am very fortunate to have found just the right "fit" of appliances, rings, etc.  I use Hollister convex wafer (2-piece system) and Perfect Choice barrier rings.  I usually change my appliance once a week.  I realize that everyone is not that fortunate and if I were getting skin issues of any type with changing once a week I would change more often but so far (I have had Sheldon for about 1-1/2 years now) so good. 

The biopsy of my colon showed I actually had Crohn's Disease, too and there were no signs in my small bowel.  I was told that that was the best scenario to have but as far as less likely to have issues in the future ... I guess it is a "wait and see" situation.  I had a total proctocolectomy so there is nothing left from my small intestines down ... so I am hoping the Crohn's went away and will not return.  

Just keeping asking any question that pops into your mind.  If the wafer you have now is a good fit and you do not have issues with leaks then you should be good with that for your ileostomy.  

Paula

Posted: Mon Apr 10, 2017 1:00 pm

Thanks Paula! Very useful info. Impressive that you can go a week before a change.

Thanks again!

Posted: Mon Apr 10, 2017 1:08 pm

kbd ... I actually was not able to go that long until I started using the Perfect Choice barrier rings.  For some reason they are just the perfect thing for me. 

With your colostomy, from what I understand, you have pretty regular output just like you did before you had the ostomy, or at least somewhat predictable output.  With an ileostomy things move through very quickly ... you need, and this is VERY IMPORTANT, more hydration, soidum and potassium.  The reason for that is the colon is what absorbs these things into your body -- the fluids, sodium and potassium.  You will no longer have the colon doing that.  Different people have different levels of things -- I find that a Powerade Zero each day (either the 20 or 32 oz.) is good for me to keep my electrolytes balanced while some people actually use powders and such that they dissolve in water, etc. to increase their electrolytes and potassium.  I try to eat a banana each day for potassium.  But hydration is very important as you will be expelling more of the fluids that your body has been absorbing through the colon, thus the thin, watery output.  

I usually can control the consistency of my output by the foods I eat.  I am sure you have found what foods agree with the output of your colostomy, too.  As you know, it is a learning curve and it will be a bit different with an ileo but you will do just fine! 

p

Posted: Mon Apr 10, 2017 1:19 pm

Thanks Paula!

  I notice even with 40% of my colon remaining right now I'm constantly thirsty and must drink lots of fluids. Will check out Powerade Zero. Luckily I have a habit of eatling lots of bananas.

  My ostomy setup is a 2 piece Hollister system and I use a barrier ring. I will likely keep the same setup if my stoma is about the same size --1 and 1/8" right now--but will look at something else if the stoma is much different shape and size after surgery.

  I am concerned about my diabetes medicine. I take Metformin extended release and even now they sometimes come through partially disolved so that is something I will have to keep an eye on. Regular Metformin without the extended release was too hard on my gut.

  Hopefully the change to the ileostomy will not be a jarring change for me. I do like the idea of the stoma being on my left side after the surgery compared to my right side now.

 

Posted: Mon Apr 10, 2017 1:37 pm

I really cannot eat a lot of bananas, just one a day is about it for me.  Otherwise my output gets too thick and it may cause some issues.  As I said -- I basically control the consistency of my output with food.  I find that if things do get too thick I have hot tea and that works like magic.  Have no idea why hot tea does it as opposed to coffee or any other hot drink, but it does.  I don't question, just glad it does work if I need it.  In fact if I eat things during the day that I know will firm up the output more than I would normally like I will drink a cup of hot tea in the evening just as sort of insurance.  

I think we are about the same size -- I order precut wafers so measuring is not something I have done in quite a while.  I would think the gear you use now would work ... strange you said that about which side your stoma is on now ... my ileostomy is on my right side which I prefer.  

Definitely watch the Metformin ... any pills tend to move through fairly quickly.  You might even want to call the doctor that takes care of you regarding your diabetes and check with him/her and also check with the WOCN.  Of course I am sure they are going to tell you to "wait and see" which would only make sense.  

You know at first my output was immediately after I ate something but now it has slowed down, almost as if my small intestines are trying to compensate for some of the functions of my colon, which is something that does occasionally happen.  So it is will be a definitely adjustment, but probably not a big adjustment for you! 

 

Posted: Mon Apr 10, 2017 1:46 pm

Yes, will be talking to my doctor about the Metformin.

Hope my ileostomy works out as well for me as your's has for you Smile

Posted: Mon Apr 10, 2017 1:58 pm

I am sure it will.  I have such better quality of life since having it ... it's like I tell people ... I did not realize how bad I felt until I felt good again!  I travel now without any worries, I can do anything I want without fear of not finding a bathroom in time ... well, you know what I mean.  Should have had it when they first discovered the strictures forming but they (my CR surgeon at Mayo) was able to traverse the strictures up until 2015 and then he could not get through so it was time.  But I had 6 months to prepare for the surgery, read and learn everything I could.  I found this site plus the Inspire web site and got some great information plus watched YouTube videos.  LOL  Yes, I am an OCD nerd and proud of it LOL

Posted: Mon Apr 10, 2017 2:04 pm

That's awesome that things worked out so well and you were able to prepare for it.

I'm fairly well prepared as well since living with a Colostomy for over 6 years. But dreading the surgery and recovery. I don't know if it is better or worse knowing exactly what I have to go through surgery-wise beforehand.

Posted: Mon Apr 10, 2017 2:10 pm

I know what you mean.  I had never had a major surgery before that and have to admit the abdominal pain was something I do not think you can prepare for post-surgery but I made it okay and was actually driving at 3 weeks post-surgery.  Mayo is about a 120 mile roundtrip for me (worth it as far as I am concerned) so I drove myself to an appointment there 3 weeks out.  I was fortunate that my youngest daughter could telecommute on her job for the first week after my surgery (went in on a Tuesday, surgery that day, discharged Friday morning) and of course she drove me for a follow-up appointment on that Monday.  But I did not have any "real issues" ... just had to take my time and get my strength built back up.  

Just look at it as a chance to kick back and relax a little Smile 

surprised

Posted: Mon Apr 10, 2017 3:35 pm

I too have a Ile ostomy and have had a few years . At first I lost a lot of weight more than 100 pounds and I have to empty my bag 10 to 15 time a day. Time release mess go right the me . My dr has me on a new drug called gatex because I am eating 2-4 time a day and have been in hospital for hydration very 2 days for a month. Leak is not a problem if I can get my bag on before I start to leak again , if not its back to the shower to start again.  I can go through 10 bags a week . So am always looking for the next new bag to help with the or drug to help. And yes my stoma make a lot of noise Good luck with your stoma hopefully you will have better luck than me.

Posted: Mon Apr 10, 2017 7:52 pm

Thanks for your thoughts.

Sorry you are having such a rough time Sad

Posted: Mon Apr 10, 2017 9:21 pm

Hi kbd,

I had my ileostomy surgery 4 years ago at the Mayo Clinic (Rochester). In my case, I had everything removed from the small intestine down. I am currently 2 weeks post-op with my 2nd hernia surgery. There was some question as to whether or not the surgeon would need to move the stoma for the repair. She wouldn’t know until she got in there. Luckily, she was able to rebuild the existing site with mesh. My stoma is on my right side. As you probably already know, hernias are a byproduct of this type of surgery.

Prior to my recent hernia surgery, I had to empty 8 – 10 times daily (my body is still in the adjustment/recuperative stage following the “fix”). My output has been consistently “liquidy” and I have struggled to keep things thickened up. I have found that bananas, mashed or baked potatoes, and potato chips are the only thing that work for me. I do have what I consider quite a bit of noise but I’m not sure what the norm is – if there is a norm. I recall immediately after my ileostomy surgery I had a lot of gas and ballooning of the bag, but this slowed down quite a bit once things settled in.

I had lost 60lbs. prior to my original surgery due to a serious bout with CDIF, but have since gained all and more of the weight back. Unfortunately, my muscle mass was the first to go and I never have been able to regain it.

One of the hardest parts of my surgery to recover from was the removal of the rectum. It took a full year to heal and I still occasionally find it painful to sit for long periods of time.

I have used the Hollister 2 piece bag system from day 1 and have had only 2 leaks in 4 years. Initially, I had a lot of skin irritation but seem to have solved that problem by switching to an electric razor for hair removal.

As stated by others, definitely talk to your doctor about medicines you take as they sometimes do not fully dissolve. Also, the hydration thing is SO important.

Since you’ve had a colostomy for 6 years, I believe you’ve already gone through the hardest part already – learning to deal with “the bag”.

I’m sure you will do fine, and good luck!

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