Not sure why this happened

[JudeD59]

I'm want to start my post by saying that I'm going to describe my leak test experience and I don't want anyone else who is scheduled for a leak test in the future to be frightened and think this will happen to them, because it probably won't. I think I just had an unusual reaction or a bad radiologist or the wrong tubing was used.

I had my leak test at 9 o'clock yesterday morning. I had searched through the posts and online and even started a thread asking others to describe their experience and most comments were that it was uncomfortable and humiliating, but not painful. For me, it was agony. I don't use that word lightly and nothing I've experienced so far in treatments or surgeries even comes close to the pain I felt during the test. It was so painful that if my surgeon told me that I'd have to have the test again in order to reverse my ileostomy, I would keep the ileostomy, even with all the problems I've had with it. I had no problem with the cramping from the fluid they pumped in. I could handle that. It was the part of the tube they inserted that hurt so badly. I was sobbing throughout the entire process. I know this is going to sound melodramatic, but I am actually traumatized by the experience. I couldn't talk to my husband on the ride home and haven't been able to answer my family's questions about the test. Every time I even think about it, I start crying. Over the course of being diagnosed and treatment, I've had plenty of different instruments shoved up my backside and although it's been unpleasant, it's never been like this, not even when they were irritating my ulcerated tumor. It's never made me cry, much less sob.

The part of the tube that they inserted was a little wider around than a nickel. Before the test, I asked them about using a smaller one, but they said that was the standard one for the procedure. The script asked for a barium enema with a contrast dye (I can't remember the name of it) but they used something else instead that was thicker and stickier. It wasn't the gastrograffin stuff. I know this because I asked while I was waiting for the test to start). The radiologist asked me if the surgeon wanted the test done through the rectum or the stoma. Shouldn't he know that? Thanks to reading on here, I knew it shouldn't be done through the stoma. He also asked questions about why I was having the test done and what I had removed during surgery. He didn't even know I had cancer until I told him. It just gave me the uneasy feeling that he didn't even read the notes and I was just another in an assembly line of people he had to get though.

The radiologist tried to inflate the balloon to hold the tube in and I almost jumped off the table, so he gave up on that. Because the balloon wasn't holding it in, a lot of the contrast flowed out onto the table which meant they had to have me change the two gowns I was wearing while the probe was still in me because the contrast on the gown would show up on the x-ray. Moving around like that while it was still inserted made things even more sore. I heard him tell one of the assistants that there was hardened stool in there which might have been causing the pain, but he never offered to try a smaller tube or do anything to make it less painful. At one point, someone accidentally got caught on the tubing while the the probe was still in me and it gave a good jerk, which made me cry out in pain. I didn't have any problem holding the liquid in until I could get to the bathroom and the cramping wasn't too bad, but there was blood every time I went and the traces of blood continued until after midnight last night. I have still been passing small milk dud size or a little larger bits of formed stool all day today. It is also very sore up inside of me.

The surgeon called today to tell me that I passed and we could go ahead with the reversal. I told him how painful it was and asked if that was normal. He said it can be for some patients because that part of the colon hasn't been used in awhile and so cramping can occur. I told him that cramping wasn't the problem and that all the pain was in the area that used to be my rectum where the tube was inserted. He said that area can still be tender and have scar tissue. He has done numerous rectal exams on me including a sigmoidoscopy and knows I don't usually complain. I was disappointed that he took my level of pain so lightly. Because of how painful it was, I'm really worried about getting the reversal done. If it's that narrow and sensitive in there, how bad is it going to hurt every time I try to pass stool? Over the last couple of weeks, I've passed formed bits of stool several times without pain, but since my body tends toward constipation and clustering, I don't have a good feeling about this at all.

Just disappointed that it was so much worse than I expected and worried about what this means for my pain level after reversal.

Judy

[Jachut]

I'm sorry it was such a traumatic experience and I don't think you're being melodramatic. Not at all. For literally years after treatment finished, I could be teary thinking about the indignity, pain and humiliation of the things that were done to me. I truly felt violated and I once said on here, I felt as if I'd been raped and someone on here really had a go at me for it, but that's how it felt to me. I definitely suffered post traumatic stress after the whole rectal cancer ordeal. So don't push those feelings aside or assume they're not valid, they very much are. Years down the track though, those feelings have definitely passed for me and I can look at it all with much more logic and much less emotion.

[O Stoma Mia]

I'm sorry to hear that you had such a rough time with the leak test. I don't know what to say, because my leak test was very straightforward and caused me no problems at all. However, there is something in one of your previous posts that I found very puzzling.

... I had pasty bowel movements every single day for the first 4-6 weeks with my ileostomy and a fully formed stool just two weeks ago and was able to easily make it to the bathroom every time, so I'm hoping that bodes well for my ability to control after the reversal, but we'll just have to wait and see...

In the above post you mentioned having bowel movements while having an ileostomy. But my understanding of ileostomy theory is that an ileostomy is installed for the very purpose of preventing any bowel movements from ever reaching the colon/rectum and to avoid having any solid materials traveling through the colon/rectum while the anastomosis is still in the healing process. This is really puzzling to me, especially your statement that you had a fully formed stool just two weeks ago, i.e, almost 6 months after your operation.

How could this possibly happen if you have an ileostomy that was correctly installed? In my opinion, you should not be having any "fully formed stools" at all coming through the anastomosis opening this long after your initial ileostomy operation.

I know that there are often some remnants of stool and mucus that come through in the first few weeks right after the ileostomy operation and that this is usually attributed to some left-over stool, mucus and blood that was present in the colon at the time of the LAR (due to incomplete clean-out prior to the LAR, etc.). But for you to have fully formed stool coming out 6 months after your ileostomy has been performed doesn't make any sense at all to me.

Maybe others will have more insight in this area. Right now it is late at night, so I think you may have to wait until tomorrow when more folks are around to read your post.

- - -
EDITED, for clarification:
.

.

[chrisca]

You might have had a reaction to the contrast. Check out the WebMD page on the side effects:

http://www.webmd.com/drugs/2/drug-8617/ ... ideeffects

If so, be sure your doctor notes it in your chart. At my hospital, they asked beforehand if I had any known reaction to contrast. The good news is, no leaks! After reversal there will likely be some pain associated with bowel movements but in most cases it resolves over time as the bowel stretches to accommodate the stool. It's highly unlikely your experience will translate to something similar after reversal.

Another thing to ask about is a pelvic floor resting EMG test. If you get it now, you'll get some exercises to stretch the pelvic floor and measurements to track your progress. By doing the work before reversal, you will have a better experience instead of waiting until afterward and going through the pain while waiting for the exercises to work. The EMG test is just skin electrodes, it won't be painful at all.

[MissMolly]

With a loop ileostomy, it is very possible to have passage of feces/output and mucus from the lower digestive tract via the anus the "old normal" way. It is also possible to have passage of pasty feces/output and even a bowel movement.

This is possible with a loop ileostomy . . . not with an end ileostomy.

The mechanics of how a loop ileostomy is created accounts for this, otherwise, unexpected passage of stool/feces/output in an otherwise resting lower digestive tract. In creating a loop ileostomy, a surgeon brings up a portion of length of small intestine and slices the segment of intestine along its length about 2 inches. Picture a length of garden hose with a longitudinal slit, 2 inches in length. The slit is then laid open. This creates two openings - one opening that communicates upward with the small intestine and one opening that communicates downward with the remainder small intestine toward the ileum and the entire large intestine. A small length of a plastic tube or rod is placed under the slit, elevating the segment of intestine involved, and keeping the two side-by-side openings separated. The plastic tube or rod is left in place for about 1 to 2 weeks post surgery.

In a loop ileostomy, output from the working stoma (which communicates with the upward digestive stream) will invariably exit and migrate over to the non-working/mucus stoma (which communicates with the downward digestive stream). Not all of the digestive output from the working stoma will be collected in the ostomy pouch/bag. Some output will make its way to the non-working/mucus stoma simply due to the close proximity of the two stomas in a loop ileosotmy. The output/stool/feces will drift to the non-working stoma and down-the-hatch it goes . . . traveling down the resting/diverted large intestine and exiting the "normal way" out the anus.

For someone with a loop ileostomy, seeing mucus/stool/feces/brown paste exit the anus can be an alarming experience unless they have been forewarned by their surgeon or ostomy nurse that this can be an expected happening.

The occurrence of mucus/stool/feces/brown paste passing the "old normal" way varies from person to person with a loop ileostomy. For some people, it is an almost daily event, a few tablespoon or so. For other people, it is a rare event. For still others, a fully formed normal appearing bowel movement can occur. It depends on how much partially digested food material migrates is way from the working stoma and into the mucus stoma, the two stomas lying adjacent to one another.

I hope that this helps clarify how passage of a bowel movement/output via the anus can occur with a loop ileostomy.
- Karen -

[KElizabeth]

I just want to say how sorry I am that you had to endure this awful procedure with so seemingly incompetent radiologists. You have already gone through so much, the least they can do is be prepared for your appointment.
I'm not a rectal patient but I have endured a BE and still feel scared by it , and it was pretty normal as far as that goes. I would have the same reaction.

Give yourself some time to process and heal. Hugs.

[Lydia666]

I'm want to start my post by saying that I'm going to describe my leak test experience and I don't want anyone else who is scheduled for a leak test in the future to be frightened and think this will happen to them, because it probably won't. I think I just had an unusual reaction or a bad radiologist or the wrong tubing was used.

I had my leak test at 9 o'clock yesterday morning. I had searched through the posts and online and even started a thread asking others to describe their experience and most comments were that it was uncomfortable and humiliating, but not painful. For me, it was agony. I don't use that word lightly and nothing I've experienced so far in treatments or surgeries even comes close to the pain I felt during the test. It was so painful that if my surgeon told me that I'd have to have the test again in order to reverse my ileostomy, I would keep the ileostomy, even with all the problems I've had with it. I had no problem with the cramping from the fluid they pumped in. I could handle that. It was the part of the tube they inserted that hurt so badly. I was sobbing throughout the entire process. I know this is going to sound melodramatic, but I am actually traumatized by the experience. I couldn't talk to my husband on the ride home and haven't been able to answer my family's questions about the test. Every time I even think about it, I start crying. Over the course of being diagnosed and treatment, I've had plenty of different instruments shoved up my backside and although it's been unpleasant, it's never been like this, not even when they were irritating my ulcerated tumor. It's never made me cry, much less sob.

The part of the tube that they inserted was a little wider around than a nickel. Before the test, I asked them about using a smaller one, but they said that was the standard one for the procedure. The script asked for a barium enema with a contrast dye (I can't remember the name of it) but they used something else instead that was thicker and stickier. It wasn't the gastrograffin stuff. I know this because I asked while I was waiting for the test to start). The radiologist asked me if the surgeon wanted the test done through the rectum or the stoma. Shouldn't he know that? Thanks to reading on here, I knew it shouldn't be done through the stoma. He also asked questions about why I was having the test done and what I had removed during surgery. He didn't even know I had cancer until I told him. It just gave me the uneasy feeling that he didn't even read the notes and I was just another in an assembly line of people he had to get though.

The radiologist tried to inflate the balloon to hold the tube in and I almost jumped off the table, so he gave up on that. Because the balloon wasn't holding it in, a lot of the contrast flowed out onto the table which meant they had to have me change the two gowns I was wearing while the probe was still in me because the contrast on the gown would show up on the x-ray. Moving around like that while it was still inserted made things even more sore. I heard him tell one of the assistants that there was hardened stool in there which might have been causing the pain, but he never offered to try a smaller tube or do anything to make it less painful. At one point, someone accidentally got caught on the tubing while the the probe was still in me and it gave a good jerk, which made me cry out in pain. I didn't have any problem holding the liquid in until I could get to the bathroom and the cramping wasn't too bad, but there was blood every time I went and the traces of blood continued until after midnight last night. I have still been passing small milk dud size or a little larger bits of formed stool all day today. It is also very sore up inside of me.

The surgeon called today to tell me that I passed and we could go ahead with the reversal. I told him how painful it was and asked if that was normal. He said it can be for some patients because that part of the colon hasn't been used in awhile and so cramping can occur. I told him that cramping wasn't the problem and that all the pain was in the area that used to be my rectum where the tube was inserted. He said that area can still be tender and have scar tissue. He has done numerous rectal exams on me including a sigmoidoscopy and knows I don't usually complain. I was disappointed that he took my level of pain so lightly. Because of how painful it was, I'm really worried about getting the reversal done. If it's that narrow and sensitive in there, how bad is it going to hurt every time I try to pass stool? Over the last couple of weeks, I've passed formed bits of stool several times without pain, but since my body tends toward constipation and clustering, I don't have a good feeling about this at all.

Just disappointed that it was so much worse than I expected and worried about what this means for my pain level after reversal.

Judy

Oh Judy, I can't believe this!! I'm sorry you had to go through this. Reminds me of a nasty procedure i had to have done for my thyroid cancer. They stuck a tube down my nose all the way to my throat to verify my vocal cords. I had it done several times! From all the medical procedures i had so far in my life, that was the nastiest thing. First time they did it, i was pregnant and felt like throwing up. I feel for you, really. I'll have mine in june! Yikes!

[juliej]

Oh my goodness, what a frightening and painful experience! Does your hospital have a patient representative you can talk to about what happened? Most hospitals monitor how well the staff addressed your emotional needs, how well your pain was controlled, responses to concerns or complaints made during your stay, etc. You should let them know how little concern the radiologist had for what you were going through. They need feedback or they can't improve.

At my leak test, the radiologist was quite the opposite. He positioned several pads under me in case of leaks, ask me to tell him if I felt anything more than discomfort and he would stop immediately, and reassured me that it wasn't as embarrassing as it felt. Afterwards, he gave me time to clean up and gave me several pads to use on the way home in case there was residual leakage. He also congratulated me and said based on what he saw (But, he added, the surgeon would have the final say!) everything looked perfect for my reversal. You deserved a supportive, understanding radiologist, not some insensitive jerk who couldn't take the time to read your chart or listen to what you were saying. I'm so sorry.

[lauragb]

I have never posted in detail about my leak test experience for fear of scaring someone before getting one. My experience was unusual and also traumatic. The pain and nausea were excruciating during the test. I was better for a while afterwards but kept needing to release mucous and hard stool. The mucous was very bloody. Later, the nausea and pain came back and I had to be wheeled around the medical campus in a wheelchair, vomiting in an emesis basin while doing the rest of my pre-op testing. My ileostomy quit functioning. In hindsight, I realized that the test triggered a blockage. I probably should have gone to the ER but eventually got better hours later. It hurt my ileostomy area for two days, just trying to walk. Although our experiences were different, I wonder if the build up of stool and mucous caused both our issues. I am very glad your test was successful. Sorry for your suffering.
Take care,
Laura

[Delinda2]

Judy, this should not have happened to you and I'm so sorry that you go thru such an ordeal. Of course you were traumatized! Anyone experiencing what you did would be traumatized. I also agree that you should contact the patient representative so that they can take steps to ensure this never happens to anyone else. They need to acknowledge and validate your very real (and severe!) trauma. We experience so much pain, embarrassment, vulnerability, etc even when things go well that your treatment was unacceptable. Take the time to recover, and if and when you are able, speak out not only for yourself, but to hopefully protect others. Hugs to you, many of them. XXOXO, Delinda

[JudeD59]

Thank you for all the kind responses. Luckily, in preparation for my reversal, I bought one of those bidet toilet seats and it was installed yesterday morning, so that helped ease some of the pain for the rest of the day.

As Miss Molly so kindly posted (Hi, Karen! ) it is normal to pass some regular stool from the anus with an ileostomy. Most people don't pass as much as I have, but then I don't do many things normally when it comes to medical issues. The doctors are all aware of the stool I have passed since right after my LAR and none are concerned about it. The first six weeks or so it was just pasty brown stuff, about a half cup a day, but lately the stools have been formed and about the size of a quail egg.

Jachut, I'm sorry for all you went through, too. I did feel violated. Every other rectal exam of any kind I've had, the doctors have been careful and gentle, not only to keep from causing pain, but because you can cause perforations and other damage if you aren't. This guy didn't even talk to me during except to say roll on your side, roll on your back, etc. Not once did he say one word of comfort like, "It'll be over soon." Or "We just need a couple more pictures and we can get this out of you." Or "Is it better if I move it this way? Does that relieve any of the pain?" He just kept turning me like a skewered side of beef and was completely impersonal. He only addressed the assistants, never me. The assistants were trying to be comforting and whispering to me that it wouldn't be much longer, but not him. I'm not crying anymore today and I know the memory will fade, but I'll never have that test again. If they need to find something, they'll have to do it another way.

chrisca, I don't think it was the contrast. I think it was the size of the tube they used combined with hardened stool blocking the passage plus the narrowness of the passage from surgery and scar tissue, made worse by an incompetent radiologist. I definitely plan to contact the hospital and file a complaint. One of the assistants told me, before the radiologist came in, that he is very old school.

juliej, I'm glad you had a much better experience with a more compassionate and skilled radiologist. I will be giving them the opportunity to improve and to hopefully never put anyone through that again.

lauragb, thank you for sharing your story. I know it couldn't have been easy. I wrote my post Wednesday evening, but hesitated to post it for the same reason. But by Thursday, I decided to put it up because even though I know what I went through was unusual, obviously it can happen to someone else, like you, and I wanted them to know they weren't alone. I also believe the hardened stool was part of the problem, but I think the doctor could have flushed it out or used a smaller tube once he realized I was in pain. At the very least, he could have talked me through it and asked if moving it slightly one way or another helped.

Lydia, don't worry. Most people don't have pain and chances are strong that you won't either. You should know by now that things usually go abnormally for me in all the treatments and procedures. I"m sure you'll be fine.

Thank you all again.
Judy

[Willow.NZ]

So sorry you had such a bad experience

I think it is good to share, as this is what this forum is about..the good, the bad & the just plain ugly...

I hope you have an opportunity to really voice your concerns before the reversal so you don't have to deal with anxiety & doubt.

Take care xx

[Cowgirl918]

I would definitely contact the patient relations office at the hospital. They need to know.
Much of what we have been through is traumatic. I am certain that most of us actually qualify for a diagnosis of Post Traumatic Stress Disorder (PTSD). I will see if I can find a good link about it. My recent surgery was a great success and I still have been crying off and on as I recover. Be kind to yourself and don't be afraid to be your own advocate or ask which nurse in the room has been assigned to be your advocate. My very firm policy now is if it hurts, really hurts, I just say NO. Sometimes enough is enough and often they can make the procedure easier...it is just faster to rush through.
Take Care

[JudeD59]

So sorry you had such a bad experience

I think it is good to share, as this is what this forum is about..the good, the bad & the just plain ugly...

I hope you have an opportunity to really voice your concerns before the reversal so you don't have to deal with anxiety & doubt.

Take care xx

I agree. I don't ever want to scare anyone or make them more anxious about a treatment or procedure, but I also don't want people to only hear from people who have good or tolerable experiences and have them feel alone if their experience is more difficult.

Thank you,

Judy

[JudeD59]

I would definitely contact the patient relations office at the hospital. They need to know.
Much of what we have been through is traumatic. I am certain that most of us actually qualify for a diagnosis of Post Traumatic Stress Disorder (PTSD). I will see if I can find a good link about it. My recent surgery was a great success and I still have been crying off and on as I recover. Be kind to yourself and don't be afraid to be your own advocate or ask which nurse in the room has been assigned to be your advocate. My very firm policy now is if it hurts, really hurts, I just say NO. Sometimes enough is enough and often they can make the procedure easier...it is just faster to rush through.
Take Care

I've written a letter to my colorectal surgeon, who is the person who sent me there for the test. I think he should know exactly what happened and how I was affected by it. He has always been gentle, professional, and treated me with dignity and I think he would want to know if someone he sent his patients to was not adhering to those standards. He did my LAR and also a second surgery to fix a problem with my stoma. He's given me rectal exams with scopes and without and knows that I do not complain or get hysterical when it is done in the right way. He sent me home from the hospital two days after an open LAR and got me through when the incision came open a week later, so he also knows that I can handle pain and do what needs to be done without complaining. So I'm hoping he'll realize that the situation had to be severe for me to have a reaction like the one I had.
That was my first step. My second step will be to contact the hospital directly and describe the experience to them. They are always sending "How did we do" surveys so this time they will hear exactly how poorly they did. I have given birth four times and had seven surgeries and I have never complained about a hospital or a staff member, but I can't let this one just be swept under the rug. Not if it means even one other person will have to go through the same experience.

Judy