Seeking Advice on Colostomy for Rectal Dysnergia and Related Concerns

Hello all,

I'm getting a colostomy on May 1st for rectal dysnergia (my sphincter muscle is too tight), rectocele, and enterocele. I'm worried because I don't believe my large intestine is working properly. I did have a sitz marker test, which showed 4 markers left on the 5th day, which they consider normal. I don't understand how that is normal. I'm also on Motegrity, Linzess, senna tea, and dulcolax every 2 days, and this all still feels like I'm not getting rid of everything. I was just wondering if anyone has been in a similar situation and how it worked out for you. I want an ileostomy, but my surgeon is really pushing for the colostomy. I also have gastroparesis on top of it all.

G-Day Jjones2007,

If I were you, I would get a couple more opinions, even if it means holding up the operation. Too late once you're under the knife.

Regards, IGGIE

Hi Jjones, welcome to the site. I'm with Iggie on this; a second opinion makes a lot of sense.

Hi there, yes I have. My large colon was completely dead, not moving, and I had to have it removed. I have very severe pelvic floor dyssynergia (dysfunction) and I have gastroparesis, among other things as well. I had the sitz marker test, and that's how they found out about my large colon.

I will also tell you this: just because that's what the doctor recommends or wants to do, you have the final decision. This is your body and your health, and you know your body better than any doctor ever will. You know the struggles you are having and how you're feeling, and you know when something is and isn't right. So you make the decision, no one else. If you feel and know that your colon should be taken out, then that's what you do. And you straight up tell the doctor NO on the colostomy and that you want an ileostomy and your colon removed. It doesn't matter what the doctor wants to do; he isn't in your body, and he doesn't live it day to day. You know what's best for you, and in your gut, you know what to do. Advocate for yourself; don't be afraid to stand up and tell your doctor no.

Yeah, I got a second opinion the other day, and that surgeon said he doesn't believe the colostomy would even help my situation. But if he were to pick between the two, he would do the colostomy. I don't know; I'm all confused.

My Ostomy Journey: Kimberly | Hollister

Yes, he said he would do the ileostomy but advises towards the colostomy because of fewer complications. I honestly, in my heart, don't think the colostomy is going to do much without all these laxatives still. If you don't mind me asking, what were your results on the sitz marker test?

Hello J

As advised, second and third opinions can be a necessary thing when you have concerns. On the other hand, you could go from colostomy to an ileo if the colo doesn't work for you. No one wants more ops than are necessary, but you just don't know. Many here have gone with one solution only to need another at a later date. I have an ileo, but I believe the colo is much easier to live with. At least you have options to consider.

I have an ileostomy, and to be fair, I don't think the complications are much different. Would they also do a full colectomy? Layman's terms: Barbie bum? I know having the rectal stump in situ can cause complications. I'll be having Ken bum surgery sometime over the next few months; I've had the ileo for about 7 months.

They couldn't do it all at once because I was still on steroids when I had the first surgery, and that would have caused complications.

If you're not happy, try speaking to a third doctor and then make a decision with the majority.

You have to be happy with anything they suggest because it's your health and ultimately your decision.

I know that's what my doctor was saying, but I've been sick for so long that I just don't want to be one and done, u kny.

For me, 3 is the magic number,

you get three opinions, and if two match, then you know you're onto a winner.

Any more than that, you're just trying to find a doc that agrees with you, and you've already made your mind up about what you want.

The only spanner is if you get three different responses…. But then again, they all might work for you or none of them…

You have to do what's right for you; having an ileo is pretty final. The only way you can revert it to a j pouch. But a lot with a j pouch end up back with an ileo. A colostomy still gives you the option to go to ileo, as Axl advised.

It's all about how bad your current symptoms are and if you'd be okay having multiple surgeries and then recovery time.

I can tell you how it is with my ileo, and others can tell you what it's like for them with a colostomy, but everyone's different with how they manage. There are benefits for both and also downsides.

Yeah, I just know deep down that my colon isn't working properly and that an ileostomy would ultimately be best. There are just far more colon-related issues that I have that make me feel this way. I saw my surgeon today, and we decided to go for the ileostomy, so I'm much more comfortable with that. But thank you; I appreciate your feedback.

Good luck with your surgery. You are not that far from where I had my surgery. If you are going to Beaumont Troy Hospital, I think you'll have good care. They were wonderful to me.

Hi, are you seeing doctors at one of the larger hospitals in MI? How far are you from Cleveland? It might be worth a drive to the Cleveland Clinic or at least try to get a virtual second opinion.

I sent you a message.

LOL yeah that's where I'm having surgery, actually. So I'm actually getting an ileostomy now instead of a colostomy. 🙏🏼

They have a dedicated colorectal surgery ward, and the nurses and aides on that ward are familiar with ostomies, not just the ostomy nurses. My ostomy nurse there was great, but it was nice to have such great support from all the staff. I've read some other people's stories and learned just how lucky I was.

I'm glad you are getting the surgery you preferred. Stick around; we can help if you have questions after your surgery. This should substantially improve your quality of life.

Thank you so much. I appreciate the heads up. 🥰

Hi Jj, I can relate to your story. I had what I was told was chronic constipation for most of my adult life. I tried every new drug as it came on the market and used laxatives daily, mostly just PEG for the last few years prior to my ostomy. I always felt that my colon just didn't work properly. Finally, five years ago, it perforated, and I ended up in the ER and was given a colostomy. Well, no surprise, my colon didn't work any better with the colostomy, and it was just one bowel obstruction after another. I was finally properly diagnosed with 'colonic inertia,' and my surgeon proposed an ileostomy. I started with a loop ileo, leaving my colon intact in case they wanted to reattach me. Well, the ileostomy has worked very well for me, so my final surgery was to remove my colon and the colostomy site. You may very well be in the same situation as me, and it may be that you need an ileostomy to function well. However, getting a colostomy does not have to be the end of the road. It sounds like your surgeon wants to be cautious and give you the option of having an ileo if the colostomy doesn't work for you. You are young, and living with a colostomy can be a little easier than with an ileostomy. No one wants to have a surgery they don't need; I get that. But if there is a chance that a colostomy will work for you, wouldn't you like to take it? I guess that is a question you need to answer for yourself. If you feel really strongly that an ileostomy is the only way you want to go, then continue to advocate for yourself. Seek another opinion. I wish you luck going forward. Let us know how things go.

Terry

I really appreciate your feedback, and I'm glad you got the help you needed. I did speak with my surgeon again today, and he agrees with me that the ileostomy will work. He was just being cautious, like you said, since there can be more complications with the ileostomy as far as dehydration goes. So I'm ultimately going with the ileostomy, which I'm happy about, but still just nervous. I also have gastroparesis on top of it, so I know it won't help with that, but at least it'll help with the downstairs pain and issues.

That's great! It sounds like you are in good hands. Make sure to keep in touch with us here as your journey begins. There will be a learning curve, but we are all here to help you.

Terry

Oh, I'll definitely be on here asking questions, lol.

Ostomy surgery is considered the method of last resort for pelvic floor disorders. You mentioned that you had 4 markers on the Sitz test — less than 5 is considered normal colon motility. You stated that you have other issues with your colon. Perhaps you have seen MRI or CT results indicating that you have more serious issues with your colon than motility. When a decision to have an ostomy is made, the colostomy is preferred because it bypasses the pelvic floor disorders and preserves the colon's water and electrolyte absorption. The second surgical opinion seems quite weak when it is stated that you need an ileostomy, but a colostomy is less complicated. What surgeon would suggest a less complicated procedure when they know it will not do any good? Obviously, an ileostomy will work since it bypasses most of your GI tract. A decision to forego a colostomy in favor of an ileostomy is not to be chosen lightly, without tests showing your colon is indeed problematic. Are both surgeons colorectal surgeons?

— Proud owner of lifesaving ostomy, vintage 2023, V6 colostomy engine.

I know 4 markers are considered normal, but I honestly feel that my colon isn't working properly. It's not that it isn't working at all. I just feel like the colostomy isn't the best option because I have to take 2 constipation meds, senna and sometimes Dulcolax, and I still feel like there is stuff in my colon. I constantly have pain in my lower abdomen. It hurts so badly that I can't even walk for more than a few feet. I've been dealing with this for too long, and I'm so over it lol.

All the symptoms (necessity of taking multiple laxatives, incomplete evacuation, and pain) you describe are also symptoms of pelvic floor disorders. If you are so certain of the colon, get a colostomy and MRI to see if they reveal any diseases of the colon. Both an ileostomy and colostomy will allow you to bypass the pelvic floor — the ileostomy at the expense of a good colon. The Sitz test shows you do not have a dead colon. If tests reveal only a portion of your colon is diseased (e.g., diverticulitis), you can have it removed during the colostomy — I have more than one-third of my colon removed.

Ostomy management has its own set of challenges; you should aim to minimize as many of them as possible. With an ileostomy as compared to the colon: blockages are more likely; the effluent when on the skin is more caustic; dehydration and loss of electrolytes require constant attention; the liquid/semi-liquid nature of the output makes preventing leaks more challenging; and finally, you will have to empty pouches more frequently.

Unless your colon is diseased, an ileostomy is overkill. Don't let pain cloud your thoughts — for your condition, an ileostomy is quite extreme.

— Proud owner of lifesaving ostomy, vintage 2023, V6 colostomy engine.

I went through the tests you describe, with the markers, on two occasions, a few years apart. On both occasions, I was told I was within the 'normal' range, even though I knew I was far from 'normal'! The colostomy did nothing to improve things, as the problem was with my colon not functioning properly. I even had a second surgery to remove a larger portion of my colon, but that didn't help either. It wasn't until I got the ileostomy that things improved big time. I just don't think those tests always reflect what is really happening. Sometimes it's true that only you know what is really going on inside your body.

Terry

The Colon Motility Test (it's only a test for motility) is not the sole determinant of whether you have a defective colon — x-rays, MRIs, CTs, colonoscopies, and many other tests should be considered. I had a colonoscopy, and my gastroenterologist thought I had diverticulitis, but he sent in a culture to be tested. Turns out I had diverticular colitis, which is different. With the markers, where the markers are is just as relevant as the number of markers. If you have one in the ascending colon, a couple in the transverse colon, and one in the sigmoid colon, then your colon is not functioning correctly even though your count is 4. Most people can tell when something is wrong, but not many are adept at determining if the problem is the small intestine, colon, or pelvic floor — they all can produce similar symptoms, which is why doctors have to perform different tests and/or imaging before making a definitive call. An ileostomy will certainly bypass any pelvic floor disorders and the colon. There is no guarantee that an ileostomy will resolve the problem of the abdominal pain. Beach Boy talked about how testing and imaging were not the answer for him; the surgeons had to do exploratory surgery. Beth talked about having similar problems, and she has an ileostomy — sadly for her, she has still had to undergo multiple surgeries and procedures since. Obviously, there is no easy answer.

— Proud owner of lifesaving ostomy, vintage 2023, V6 colostomy engine.