Seeking Advice on Transitioning from Colostomy to Ileostomy - Need Tips and Insights

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 polyps 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 gassy, 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. I 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 a total of 14 pounds. 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 guarantee, 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 a while. 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.

You will adapt just fine. I find that with them leaving more hanging out than the colostomy, I have fewer leaks and less trauma to my skin around it. Losing weight, I wish, but no, I have gained and I am not happy with that at all. I was 110, and since my last surgery on January 30th, 2017, I have gained to 141. I have way less gas, hardly ever does it make any noise. You will have to empty quite often. Everything will digest just fine, but everything for me goes straight out. I am not sure about your Crohn's because they treated me for Crohn's for 9 years, then my surgeon said I did not have Crohn's, I had a dead bowel, 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

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!

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

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

Thanks again!

Words of Encouragement from Ostomy Advocates I Hollister

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, sodium 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

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 eating 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 a 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 dissolved, 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.

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 will be a definite adjustment, but probably not a big adjustment for you!

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

Hope my ileostomy works out as well for me as yours has for you :)

I am sure it will. I have such a 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 website and got some great information plus watched YouTube videos. LOL Yes, I am an OCD nerd and proud of it LOL

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.

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 round trip 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 :)

I too have an ileostomy and have had it for 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 times a day. Time-release meds go right through me. My doctor has me on a new drug called Gatex because I am eating 2-4 times a day and have been in the hospital for hydration every 2 days for a month. Leakage is not a problem if I can get my bag on before I start to leak again, if not, it's back to the shower to start again. I can go through 10 bags a week. So I am always looking for the next new bag to help with the odor or a drug to help. And yes, my stoma makes a lot of noise. Good luck with your stoma, hopefully, you will have better luck than me.

Thanks for your thoughts.

Sorry you are having such a rough time :(

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 things 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 60 lbs. 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!

Hi Lady ... We are practically neighbors as I am in the southeast valley. I noticed you said you go through about 10 bags a week and I was wondering ... you are using a drainable bag aren't you? Just curious.

Paula

Hi GraphX12 ... I am sure you already know all of this, but have you tried a waffle cushion for sitting? I had everything removed from the small intestine too and the waffle cushion was a blessing ... I have not had any issues from about 6 weeks out from my surgery so I definitely am fortunate! Also, if you are sore and need something soothing ... try Preparation H wipes with Aloe! I still use those occasionally just for a clean feeling during the day ... just a thought!

Paula

GggraphX12, thanks for sharing your experience!

I also use an electric razor for hair removal and find it useful.

I have worried about hernias from the start as I have a pot belly and weight goes right to my middle. I have luckily avoided hernias. Sorry to hear you have to deal with that. I wear an ostomy belt religiously, a 4" belt and even sleep with it on. I also have a 6" belt that I wear occasionally if I am going to be actively doing something that involves any lifting.

Sorry to hear that about your muscle mass loss. I know that in serious weight loss eventually the body starts on the muscles when the fat is gone.

Thanks again for sharing your experience. I had not thought about mashed baked potatoes and such to thicken the output.

Good luck to you too!

Hi Paula,

I was given a very nice cushion immediately after my 1st surgery that has been by my side ever since. Couldn't have gotten by without it. Actually, these days, I generally keep it in my car for longer drives. The pain "down there" has generally resolved but occasionally creeps up from time to time. Thanks for the tips!

Best to you!

So glad you have been spared hernia trouble, KBD.

I also have hernia belts of various widths and fabrics, actually 4 of them. Still got the hernias. My 1st one required emergency surgery as 8 inches of my small intestine had pushed out through the "hole" and got kinked. I have to say the pain was the worst I have ever experienced. Passed out on the floor and woke up in the emergency room. The surgeon told me once he got in there the hole was big enough to put his fist through. I was extremely lucky that portion of the small intestine didn't die.

This 2nd hernia surgery was not emergency, but rather better to fix it now than later. It had grown to the size of a grapefruit and my surgeon told me it was a matter of time until the same thing would happen as the previous one. Mesh was used this time to try to reinforce the area so hopefully this will help to prevent further ones. To say that I will be extremely cautious from here on out is an understatement!

Best of luck to you, KBD!

No problem, GraphX12 -- I know my waffle cushion has been a tried and true friend over this past 1-1/2 years! I think many people make the mistake of getting a donut cushion and that is about the worst thing you can do. I have had no issues on long flights or anything else, so I am, again, quite fortunate! Take care!

Morning KBD... I have thought about getting a hernia belt and did not know if I should get the 4" or 6". Could you give me the info on them? I know they are generally purchased through Nu-Hope or through my supplier for my ostomy supplies. I would love to ramp up my workout (for lack of a better word as it is only walking)... but did not want to risk a hernia. In fact, I do not even know what a hernia would feel like or look like, the latter being a bulge? Thanks for the info!

Paula

GraphX12, sadly, some people are prone to hernias. I worked with a lady years ago, she did not have an ostomy, but she constantly had hernias needing operations.

Sorry you have struggled with hernias and I know the ostomy cannot be helping that situation :(

Best wishes.

Paula,

You could just get a 1" ostomy belt for general use. Perhaps a 4" belt for exercise and workouts. Depending on your insurance, the belts are covered. My 4-6 inch belts are Nu-Hope. For the 4 and 6 inch belts, you need to order them according to your appliance size opening. For instance, I think mine is a 2 and 1/4 inch diameter opening.

I have Crohn's and an ileostomy. Ileostomies dry you out, Crohn's is throughout your small intestine too so getting rid of your entire bowel will not matter as far as Crohn's goes. Your bowel siphons out the water from your waste, you need that. If I had it to do over again I would have kept as much of my colon as I could. I am always dehydrated which makes me dizzy and sick to my stomach. I have no bowel. My food does not digest well and I can only take gummy or chewable vitamins as the other type seem to pass right through me. With my ileostomy I get a lot of blockages as the small intestine is much smaller than a large intestine and when they sew the end of it to the front of your stomach the scar tissue constricts the opening even more. Since the food does not digest all the way the acid in the liquid output corrodes your skin and gives you a diaper rash-like wound that can ulcerate and make painful bleeding holes in your stomach skin. I have to watch what I eat, no almonds, coconut, watch out for popcorn. Potato skins and other fruit skins block your gut, I can't eat many raw veggies, too much fiber blocks your gut. When I get a blockage I drink Phillips Milk of Magnesia and water, a lot of water. I have an ileostomy because med students cut holes in my bowel taking biopsy pieces during a colonoscopy. The holes leaked sewage into my body cavity and I went septic. That was 7 years ago. I don't know what it is like to have a colostomy but an ileostomy has affected my whole life. I can do almost nothing that I did before the surgery. Be super careful of hernias, don't lift anything. It will hurt you if you do. I get vitamin deficient because I don't digest my food, I am so exhausted always and my gut stump always bleeds. My gut stump keeps trying to tear free of my stomach I believe because of the corrosive acids eating away at it. If you have a choice to keep any part of your bowel, keep it. I believe God put us together the way we are for a pretty good reason. We need all of our body parts, they all do a certain job. Good luck to you.

Hi Paula,

Just to add to Kbd's info: Seeing that you live in Arizona, you may want to check out the cooler fabric belts Nu-Hope has to offer. In my experience, the belts can get a little warm. The cooler fabric ones are more breathable. Good luck!

Sorchia,

Sorry to hear you have an ileostomy due to such reasons. Thank you for sharing your experience and offering ideas. I'm not sure if every last bit of my colon will be removed, but since they found polyps further back as well as a stricture, it does not sound like much, if any, will be left. I take several meds that dry me out now due to asthma and allergies, so I am concerned about all the feedback about dehydration and electrolyte problems. I drink fluids all day the way it is.

Thanks again for your thoughts.

Hi, just as Paula said, I think your only major issue is the medication. Anything you swallow will go through very quickly, so make sure to work out a plan with your doctor(s) about the adjustments. You will probably need supplements too.

Very best wishes and don't be worried. Check out the recommendation regarding diet and maybe start changing now; it makes it easier.

Thanks Shona!

Yes, I figure I will have to use regular Metformin and drop the extended release pill. I take chewable acidophilus, chewable multivitamins, and chewable Vitamin C. And will try the Powerade Zero that Paula mentioned. Am I missing anything on the supplement front? Should I plan on a low residue diet?

Thanks for your thoughts!

Laying in hospital bed typing this. Went from ileostomy to colostomy yesterday. Starting to pass gas. Of course, this is what we were waiting on. Let me have breakfast. Waiting on surgeon making his rounds. Very little pain. All seems good! Steve