Out of the Bag: Getting an ileoscopy

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon

I’m sure at some point in every ostomate’s life, he or she will have to undergo an ileoscopy. For me, that day was yesterday. And I’m sure there will be more in the future, but this was my first one since my surgery over two years ago. I was a little nervous simply because I didn’t really know what to expect. But I am happy to say that, especially compared to a colonoscopy, it was an easy procedure and there was nothing to worry about it. But here’s a little of what you can expect…

First of all, for anyone who does not know, an ileoscopy is simply a scope of the small intestine. It is the same thing as a colonoscopy… just without the colon. It’s a quick procedure, but they do put you under anesthesia. For a person with an ostomy, they take the camera through the stoma and take a quick look around the small intestine for any signs of inflammation.

stoma colon ostomy ileostomy ileoscopy hospital procedure IV stomach stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomySo let me say that the best part of having an ostomy is that you no longer have to go through the horrible, awful bowel prep that usually precedes a colonoscopy. (At least in most cases you do not. I do know of someone who is still doing a prep before an ileoscopy.) For me, I was told to not eat anything after midnight the day before and to consume only clear liquids on the day of the procedure. This was a little difficult since my appointment was not until 3:30 in the afternoon, but it’s not so bad to just miss a couple of meals.

I had a cup of coffee in the morning and then drank a liter and a half of water during the day. It is very important to stay hydrated. I had to stop drinking three hours before the procedure, so I did my best to get as much down as I could before that time. I still felt a little dehydrated by the time I was going in for my ileoscopy and my veins were definitely not working with me that day. It took three pokes to finally get in a good IV. (Although that’s pretty typical.)

The pre-procedure part is very routine: You check in, change into a hospital gown, get an IV, get hooked up to a heart-rate monitor, meet with the anesthesiologist and your gastroenterologist. Then you do a lot of waiting. I was the last appointment of the day, which usually always means a bit of a delay. But they finally got me in and ready to go.

This is the first procedure where I was given propofol. I’m not sure what I was given in the past, but there have been times that I have woken up during a procedure and it usually makes you really loopy and exhausted for a while afterwards. The propofol is supposed to help with both the staying asleep and the waking up. It had a nice burn going in, but I didn’t wake up at all during the procedure and when I came out of it at the end I was almost immediately coherent. (I’m pretty sure I did ramble a little with the nurses, but oh well…) It’s probably the first time that I actually remember a conversation with my GI without my husband or my mom having to fill me in afterwards.

stoma colon ostomy ileostomy ileoscopy hospital procedure IV stomach stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy bag pouchBeyond that, everything was fine after the procedure. My stoma is maybe a little bit sore, but only when I’m really thinking about it. My GI also gave me a shot in the bum where my wound hasn’t quite healed up, so that was tender, as well. I’m hoping what she gave me will help clear that area up! I did bring extra ostomy bags, since I wasn’t sure if they’d need to take it off, plus I use the stick-on two-pieces, so there’s also the chance it might not stick it back together, but it did. However, I would definitely recommend bringing back up bags, because you never know what’s going to happen. I did get a kick of how my bag had been replaced when I woke up… with a little extra tilt.

One funny side-effect is that there was a lot of gas releasing after I woke up. (Read: There was a lot of stoma farting.) And it was so loud! I couldn’t help but laugh as the doctor and nurses were talking to me and it kept making noises. So just a heads up that you might be in for a little symphony after you wake up. It only lasted about 15 minutes, though, and I didn’t have any bloated, gassy pains with it.

And I am happy to report that the scope looked great. No signs of inflammation or Crohn’s anywhere! That was a big relief, especially after I have had a few issues with my proctectomy wound and the eye inflammation and a little issue while I was in Italy (that I will tell you about later). If felt really good to be told that everything was how it should be, considering that I don’t believe I’ve ever been told that after a scope in my life. I’m so thankful.

But that was my experience with getting an ileoscopy. Let me know if you had any different experience. Also, if there are any questions I didn’t cover, leave them below and I will answer them the best that I can. 

Sit down, stay a while. I'd love to hear from you.

  1. Hi Stephanie, I am so glad that you got a good report!! What is the shot you received in your bum? I too have been having some problems with healing from my proctectomy and would love to have more info. Thanks

      • I too have a lot of rectal pain, 2 years after my illiostomy. I also tend to have what are bowel movements but no stop, just a lot of mucus. My surgeon told me bowel movements are normal. I actually had a flexible sigmoidoscopy and they found a stricture in my rectum. I was given a cream called Nifedipine, which is a blood pressure med, but by putting it in the rectum, it releases the stricture. This has helped some with painful bowel movements.

      • chatkat576, do you still have your rectum? The reason I ask is because I had a lot of pelvic pain prior to surgery! I had a prolapsed rectum and it was soooo painful! Hope you feel better soon!

    • Same problem here with the bum! So frustrating! Had surgery to debride, made it worse! Had 30 hyperbaric oxygen treatments, helped close a little but still get drainage ughhh! Going on two years! Would appreciate hearing more about your shot and what it is supposed to do! Also, thank you so much for the great information on your ileoscopy! So glad everything was good for you! Thanks Stephanie!

  2. Thanks for the info. Sounds like you had a great holiday.
    Back to the real world.
    Can you explain what had not healed after 2 yrs?
    Do you still emit a liquid from your anus?
    I was told it is from a gland and that it would eventually dry up.
    Do you know of any website that can tell us more about color and consistency of poop that we get with an ileostomy. Also, is there any food we cannot/should not eat.
    So far I’ve noticed onion, mushrooms, cactus, red and green peppers, green beans even when cooked well, will not ‘dissolve’. I’m concerned that something will block the intestine.

    • “Can you explain what had not healed after 2 yrs?”

      I don’t know of Stephanie’s specific butt problem, but I was just in for a follow up with my surgeon as my butt wound also hasn’t healed (7 months now) and she said that some people just don’t heal up and others take a very long time. I have a history of severe perianal disease + Crohn’s and the combination means that it’s a more complicated wound and healing is often delayed or incomplete.

    • Hi Peter, it’s a little hard to explain what has not healed… it basically just still has attributes of an open wound, like sensitive skin, a little irritation. It’s actually only been 1 year since my proctectomy. Everything from my original colectomy 2 years ago is fully healed. And what hasn’t healed from last year is nothing major. It just can still be a little sensitive from time to time. It may put out a little discharge, but it’s not much any more. I don’t know of any website resources like that. As far as food, you nailed it pretty well. Those are the same sort of things that cause me issues. Even so, I have not given up eating any of them, I just make sure to eat smaller quantities and to chew really, really well! Also corn and steak can be a problem, but again, just chew, chew, chew. And drink lots of water. That will help with any potential blockages. I hope this helps. Let me know if you have any other questions.

      • Thanks Stephanie. You bring up new names. For some reason I thought you had an ileostomy because your bag is in exact position as mine. Plus I mistakenly thought surgery gets rid of colon and they attach a bag to the end of the ileum, which is the bottom of the small intestine. I have this. I read that proct relates to a tumor in colon. Have they attached the bag to something lower than the the ileum? This is all very fascinating stuff. Thanks for writing this blog. It shows there are many people like myself who are still searching for answers and best practices. Do you know of any other forum for those like us?
        And thanks vegan for the reply.
        One last question. How often do you empty your bag? I have to empty at least 8 times a day and sometimes more if the waste is very liquidy. I have a feeling this is alot and may be due to my hyperthyroidism. Plus I have a discharge from my anus on average once every 2 days. It has the same feeling before and during as when I had a colon. Do others have the same? My op was 6 months ago. I haven’t had a blockage yet even though I usually forget to chew properly. I must change that aspect pretty quick.

        • Peter, I do have an ileostomy, like you. I had my colon removed/colectomy and received the ostomy at the end of the ileum, as you did. At the time, they left about 6 inches of my rectum in the case I could be reconnected at some point. It was determined that I could not, so the next year I had the rectum & anus removed/proctectomy, which officially made it permanent.

          I would say that I empty my bag about 6-8 times a day and from others I know I believe that’s pretty typical, especially if it’s pretty liquidy. Prior to my second surgery, I had a lot of discharge, too, and the phantom feelings. Removing that last bit took care of it. Do you still have some colon left?

          • Stephanie, I am a new ostomate–just had my colectomy on Tuesday! I went into the procedure thinking it would potentially be permanent since I have heard so many negative things about the jpouch. I’m 30 years old and looking to start a family soon. Your blog really helped to prepare me for surgery and it’s really nice to hear of another young female with a permanent ileostomy. So many our age opt for the reversal if they can. Looking forward to being a part of the community you have started here.

          • Yes, they did. It was in case of possible reconnection, but that area was too diseased for that to happen. That’s why I decided to go ahead and have it removed.

      • Any thing that us a fibrous plant will not break down in the small intestine. Things l I like corn actually have 2 parts, the hull and the kernel. The outside hull of corn will not break down in the bowel and will be discharged just as it was swallowed but the heart or kernel will digest. Things high in fiber like broccoli or green beans will be treated just like the outside of the corn and will pass through in the same condition as it was swallowed. Normally these parts of plant material is compacted with other digested waste in the colon, we just get the fun part of being able to have mini science experiments each time we eat something plant based. As far as meats go the more cooked they are the less there is to actually break down in my experiance. Just remember to chew everything as much as possible, the smaller the pieces going down, the easier it is for them to digest and get expelled.

      • Wow – I am new here and actually have a lot of questions: My name is Kathy I have an ileostomy also (Crohn’s Disease) – Like someone else mentioned here they originally left the rectal stump but nine months later after very bad inflammation – gangrene they say .. . it was removed (this was 2009). However, I have some interesting issues that I cannot find any explanation for on the internet. (oh also I am stitched up) – 1. I have chronic pain down in the pelvic region – specifically around the rectal/anal area. An MRI was finally done in the area and they saw inflammation – but of course no one wants to go in there! They also know I have a loop of bowel in the region and it happens to be adhered to my bladder. Perhaps that is all the pain? They cannot find any fistulas BUT I have been having chronic UTIs/kidney infection that went septic even in the past several months. These infections have been bowel bacteria. Since we women get those bugs from the way we wipe (and I am stitched up I am perplexed as to how those bugs are getting into my urinary tract – any thoughts anyone?) Also passing a lot of air bubbles into my urine . . . surely some weird stuff here. I am having a cystoscopy etc. in a week and this week my new GI will be doing an upper GI as well as an ileoscopy (which is how I found your blog) I have had one of these before (My original and long time GI is up at Cleveland Clinic if anyone wants to know he is the BEST doctor and I love him – he has been my doctor for 25+ years but I was in need of a local GI – so he will be by 1-2 year dude while I see my new local dude 😉 ) Anyway, one of my other questions is how far can they even go on an ileoscopy? I am having a lot of abdominal pain and I am suspecting a flare . .. but previously the could only go about 10 inches my Cleveland GI said I was not comfortable during the procedure so he would not go further.

  3. Glad all went well for you with a spouse that supports you. I was diagnosed with moderate Chrones Dx a year ago. I lost my colon to UC when I was 17 yrs old some 32 yrs ago now. Now they know what I actually had all those years ago. I have to go in for a illeoscopy tomorrow, second time after being on Inflixamab for a year. I think I’m loosing the battle so I need to make a decision to hang in there or opt out. Many years of ostomy health and productivity but rejection issues around my intimate life. Might be time to move on? Thanks for your information. Take care.

  4. Your experience and information shared was tremendously helpful to me – I’m hoping my Dr agrees to remove the tiny piece of rectum after I had the ileostomy and attempted reversal which was not successful. Anal discharge now is really my only chief complaint thank God. Stay healthy and thanks for sharing!

    • Thank you, Glen. I’m glad it was helpful. I definitely hope you get the relief you need. I experienced the same thing, so I understand.

  5. Hi Stephanie,

    I am so glad that the results of your ileoscopy were good! That is the first I have heard of that procedure! My surgeon/GI doctors have not mentioned that one to me yet

    • Thanks so much. And it’s not necessarily a necessary procedure for ostomates, as a colonoscopy is for those with IBD or other digestive diseases. But I would think that probably most people with an ostomy will have to undergo one at some point in their life, however, that is just merely my thoughts. I ended up having one because I was having an issue with my wound site from my rectum-removal surgery, and there was some mild concern that I may still have some active inflammation. (Thankfully, there was not.) I also underwent it because I was starting to think about getting pregnant at that time and the doctor thought it would be worthwhile to take a look before doing so.

  6. Hi Stephanie,

    I am so glad that the results of your ileoscopy were good! That is the first I have heard of that procedure! My surgeon/GI doctors have not mentioned that one to me yet

  7. Good morning,
    I am 14 months post op for permanent ileostomy. I have crohns and Dr wants to do scope. I am very nervous. I’ve never done prep because I had a JPouch prior to this. Dr wants me to do golytely 2 liters. I’ve always done clear liquid day before. Do most people do prep?

    • I did not personally prep, but I know others who have. I would be careful with taking something as strong as golytely. I am not a doctor and they do know best, but I would probably make sure that it is common procedure to take that amount of the drink. With an ostomy, you can get cleared out really fast and also dehydrated really fast. Is there a second doctor to get another opinion?

  8. I’ve had my ostomy for 25 years and am probably going to have my first ileoscopy soon. I have my annual follow up with my Dr June 4th. He noted last year it should be done this year. I had no idea what to expect so thanks for being brave enough to share! I’m less apprehensive now.

  9. I have a j-pouch which means I have no colon. I have a scope about once a year because I have issues frequently. It’s defiantly nicer to avoid the prep.

  10. I had an obstruction 2 weeks ago that resolved with bowel rest and an NG tube for 3 days. The doctor said yesterday that since my strictures are less than 7 cm from my ililostomy he wants to scope and see if he can balloon the areas so I won’t have another obstruction there. Your description of your procedure has helped me to decide to go ahead with it. It has been 2 years since my j-pouch was removed and I went with a permanent ileostomy, but I am still having discharge from what is left of my rectum. The segment (stub) that was left has caused bloody tinged mucous. It was really bad before I had the obstruction. They took the opportunity while I was in hospital to give me Cipro and Flagyl thru my drip. It did wonders to clear that up, but it has started back to some degree. It is not as bad now, but I do have a surgeon who wants to go up in there and try to take it out. Decisions. Decisions. thanks for your post.

    • I can relate to many of the feelings shared here, thank you as I feel isolated. Myself in 2004, my son in 2005 and daughter in 2006 had our large intestines removed along with our rectums. Years of repeated visits for a rare genetic disease I had no clue I had and passed on to my children. We were all set up with the reversal and j-pouch. I continued with blockages, though chemo doesn’t shrink the inoperable soft tissue sarcoma that grew entwined on the small intestine and upper aorta I gave that a shot three separate times. FINALLY my bowel stopped working and the hospital that saved us doesn’t have a policy for testing. Just more chemo. I flew half way across the United States and everyone was wonderful, they reached an angulation and opened it up with the placement of two pigtail stents. My pelvic floor doesn’t function so they placed a Neurotransmitter into my sacral nerve in my spine with a box and probe. Think pace maker for incontinence . You see prior to all this after 12.5 years I had a red inflamed bottom going 140 times a day after the j pouch then nothing. With pig tail stents in I became incontinent. Still left me hurting. I flew home no more red bottom they gave me a cream that can be purchased only on amazon and target and the b-sure pads and presto three days and two pig tail stents and a neuro transmitter I was able to eat and drink. I flew home and two weeks later the stents came out my bottom. Imagine a pigs coiled tail made of something very hard and about 4 inches each piggy backed to the other coming out. Painful and scary. I flew across the country again and they prepared me for a procedure to take a few stitches and place new pig tale stents. That was June 8th of 2016, story has it that I screamed in pain for four hours from family sources and nurses( and by 10 pm the following day I was out of the back to back surprise surgery) who then called the G.i. who preformed the procedure. They kept pumping pain medication into me with no relief. At bedside I ..had an xray which showed they had perforated my small intestine. I came close to death and it was not certain in surgery if I would make it. Obviously, I made it, my daughter now 28 was alone with me as my husband had been my in the home patient full time for the last 23 years. We had to place him in a nursing home n frankly he is better. Multiple SCLEROSIS with dementia, no control of his bladder or bowel, paranoia and functions on ques. My daughter is my caregiver for my issues and myself and her husband for her things. I flew home nine days later with an ileostomy. I’ve been rejected by friends male and female and feel isolated, and scared. I became ill on the visit home my Gallbladder was leaking and our local regional hospital surgically placed a t tube and drain bag in. I went to my original hospital who did blood work and informed me I looked tragic on paper and ok in person. I have spent more time in a hospital than home in 2016 and 2017. My gall bladder attached itself to the small intestine left. I put out too many liters and face kidney issues. Tomorrow I go in for blood work as I will every 7 days and if needed I will receive Iv fluids. The following day I have my first upper and lower with an illeostomy. That is frightening the last one I had was with the j pouch. This is the short version but it felt good to purge and say no matter our age we share fears. The older you get with this disease my daughter states the more she can see how it affects what she eats and how she lives her life. Thank You for listening, I cant find friends who can relate or want to . It’s not a requirement but it would be nice if someone would say just once would you like to see a movie? cry on my shoulder? All friends have grandchildren and large families time shares and spouses. I feel like an empty sick nester and burden to my daughter. I would love to have one or two good friends my age, unfortunately they are busy. My mother is busy with her second generation grand babies and the lives of the daughters who meet all her needs. It sounds pathetic, I’m scared and I can’t share these fears with my busy daughter with the same illness as it has effected her in alarming ways different from mine. I don’t want to go to another support group nobody gets what I have with the exception they have an ileostomy. There is about 16 of them all in their late 60’s or 70’s. Oddly they have had their ileostomies for 40 and 50 years. They work and feel and look great. I feel foolish, they’re in better health than me. Posting with guilt.

  11. I have to admit that I was just diagnosed with stage 4 colon cancer. They are wanting to remove my large colon leaving me with a ileoscopy bag. I was under the impression that my anus would actually be sewn shut during the surgery. however, the questions or comments on this page leave me to believe that is not the case. Am I missing something?

    • I’m so sorry to hear of your diagnosis. There are different options as far as surgery, so either could be true. If the ostomy is going to be permanent, the anus is usually sewn shut. If there is a possibility for reversal, then it won’t be and could be reconnected in the future.