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Has anyone had ostomy due to internal anal sphincter spasm?

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Posted 4/29/2008 1:04 PM (GMT 0)

I'm a 37-year old woman and I'm just wondering if anyone here had an ostomy due to internal anal sphincter spasm?  Seems nobody except for my doctor has seen this, and he says it's usually due to neurological reasons. I also have trouble pushing urine out of my bladder.  I have had all the zillions of tests, including the one for colonic inertia which showed I "may" have that as well (have to retest.... long story), and also did biofeedback, which helped me learn to relax my external anal sphincter, but not the internal one, because that is INVOLUNTARY and I cannot control it.  My main symptoms is that I cannot have a bowel movement at all without an enema, because the internal sphincter is spastic and very tight - like it's locked closed.  Even enemas aren't working too well anymore.  I'm very ill with all the toxins in my all the time, and I'm not sure what to do.  None of the meds he gave me worked.  The doctor said he could cut the sphincter, but there are lots of risks with that.  The only other option is to have an ostomy, but I must admit that scares me.... but I'm running out of options.

Anyway, has anyone here had an ostomy b/c of a problem like mine? 

And also, how bad (or not bad) is an ostomy?  It just really scares me, yet I know many people have them and if it would help my quality of life to be better, I may consider it.  I just keep hoping there are other solutions, but there don't seem to be any.  I feel so alone in this.

Thanks in advance for any input.

:-)  

Posted 5/1/2008 1:22 PM (GMT 0)
Hello..I had a subtotal collectomy/ileostomy on April 3. The reason I had mine done was for two reasons..first chronic constipation due to the sphincter muscles not working because of scleroderma..(an auto immune illness). Constipation is due to pain meds for scleroderma. Mine is a permanent illeostomy. And I was concerned about the surgery and also living with a bag for the rest of my life. The surgery was a breeze! I was out of the hospital in two days. The pain was managed with pain meds and I was up walking the night of the surgery. Now I am four weeks post surgery, I am having pain in my side under the stoma. It is a sharp pain with spasms. But my surgeron says this is normal as everything is healing inside. I am using heat to help with the pain as suggested by my visiting nurse. I feel so much better now that I have all that stool out of my body! I was so bloated and sick feeling with all those toxins! I have more energy and look healthier. Everyone I see comments on how good I look..color in my face and just look healthier. I am doing fine as far as my self image and the bag. My husband has been very supportive too. If you have any other questions..please ask. Good luck. Marie
Posted 5/1/2008 1:25 PM (GMT 0)
Also..I too have trouble pushing urine out! My surgeon said that during my surgery, my bladder was huge! And she did have a catheter in place with good output. She said my bladder looked thickened..which makes sense since I have scleroderma. She had to move the bladder out of the way with her tools! TMI as far as I am concerned. lol.. Good thing she didnt nick my bladder. I have heard of this happening. Anyway..I just wanted to let you know about the bladder issue..Marie
Posted 5/1/2008 11:26 PM (GMT 0)
KAP,

I'm a 37 year-old woman with a permanent ileostomy. I had it done two years ago because of the opposite problem - chronic diarrhea - from Crohn's Disease. I could've had the surgery in 1999, but I was too scared of the bag, so I treated it for 7 years with medicine and a restricted diet. The disease kept getting progressively worse, so I finally had to have surgery to save my life.

Once I had it done, I couldn't believe how much better I felt. For me, it was the cure I'd been praying for. I was pleasantly surprised by how much I liked having an ostomy (compared to being sick). Imagine never having to worry about going to the bathroom again. It's truly amazing!

Here's my opinion, since you have a problem that's not going away on its own, and your surgeon has told you that an ostomy will fix your problem, then I think you should do it. You can't live without going to the bathroom, and this is a wise solution to your problem.

Having an ostomy is honestly no big deal. It's completely hidden under your clothes, so nobody will even know you have it. I started a new job 2 weeks ago, and nobody there knows I have it. I also go to the beach and swim in the pool with my young nieces and nephews, and they don't know I have it.

I just wanted to let you know that if you decide to have the surgery, your life will not be over. It will be a new beginning to a healthy you. Do you have a hubby and children?

If you want to see what we look like, you can visit our www.photobucket.com page. The user name is crohnsdisease and the password is 6mp3asa. Good luck with your decision and please keep us posted on how you're doing.

:-) Cecilia
Posted 5/2/2008 1:20 AM (GMT 0)

KAP-I totally agree with Cecilia.  An ostomy is much better than living with an illness, if there is no other (or better) alternative.  I also have crohn's, and have had many different problems along the way.  This isn't my first ostomy...I had my first one (which was temporary) reversed the moment my surgeon said I could and was back in for surgery within a few months for #2!  I did finally take the plunge and have a proctocolectomy in February, so it's permanent now.  With the ostomy I finally felt good, can go out whenever/whereever I want, do sports, ride a horse and travel.  The only limitations are the ones people put on themselves. 

While my diagnosis was different from yours, your life could be just as good as mine is now.  Everyone is different and comes to their conclusions on their own time.  I know mine took many years and my doctors didn't push me, they let me come to the conclusion.  I am 40 now, was diagnosed at 20 and have had an ostomy for at least the last 7 years.  I would suggest meeting with an ET nurse, learning about the products and even meeting an ostomate if possible.  My hospital has volunteers that work with the ET nurses and meet with possible ostomates to help answer questions.

I wish you luck in any road you take and like HisWill mentioned, we are here if you have any questions, just ask!

Posted 5/2/2008 5:04 PM (GMT 0)
I just want to thank all of you for replying. I found your posts very encouraging and I very much appreciate you taking the time to write me back. It sounds like you have all been through it but that you're feeling better, and that is wonderful. I am praying a lot about what to do, and maybe an ostomy is the answer, but even still I'm nervous about it. I'm into alternative therapies and have heard of people getting better from my condition, but it seems that no matter what I try, it doesn't work like it does for other people. I sometimes wonder if this is God telling me to just have the ostomy, but I'm still just not sure. It's just such a huge decision to make, and I keep wondering if there's something out there that might help me....
Posted 5/4/2008 10:10 PM (GMT 0)

KAP, I can relate to what you're thinking. I knew someone with Crohn's who was in remission while on a vegan diet, but when I tried it, it didn't help me. sad  Hopefully, something will work for you, but if not, you know that surgery is always an option.

You're doing the right thing by researching what it's like to have an ostomy. Then, you can weigh your options and decide what's best for you. If you have any questions, please ask, and we'll do our best to answer.

:-) Cecilia

Posted 5/5/2008 12:01 AM (GMT 0)
Cecilia, Thanks so much for writing again. That's so sweet. I forgot to answer your questions about whether I'm married and have kids. I do have a wonderful husband, but decided years ago not to have kids just b/c I am so ill from this condition and some other health problems as well.  I think I've accepted it pretty well, though there are days I feel bad about it.  Do you have kids (forgive me if you said you did... my memory isn't too great these days)? And how did your husband do with you having an ostomy?  I'm sure it was probably a relief to him after all your suffering over all those years. I think that's how my husband will feel if I have it done.

And thanks again to ALL of you for writing to me. I can't express how much RELIEF I feel after reading your posts -- how you said it's so worth it versus feeling so ill all the time, how it doesn't show, even when you swim, etc... WOW!! Those are things I've worried about.
!! It really helped me feel more confident about possibly having an ostomy. It seems that when I mention the possibility to my friends and family, they act like having an ostomy is the equivalent of having my legs amputated!!! I think that has definitely added to my fears about it .

I have a slow computer server but this week we are hoping to get higher speed. When that happens, I'll be able to check out the photobucket page more easily. I did see a little of it, but took forever to load. Looking forward to spending more time on that site and getting to know you better.

I have some questions about ostomies that I'm wondering if you wouldn't mind answering.

*Does having an ostomy hurt, even after it's healed up? I have VERY sensitive skin, and in the past I had a port when I was in the hospital for something, and that thing hurt terribly for as long as I had it (3 weeks), but nobody else's seemed to hurt. That is honestly one of the big things I worry about concerning the ostomy.

*How many times a day do you have to "empty" the bags? I assume you empty them into the toilet?

*Do the bags make noises? My mom said her step-father had one that made funny noises. Or has technology helped with this over the years?

*Is there an odor at all?

*What does "irrigation" exactly mean?

Thanks again for replying to me. It has really helped tremendously. This past weekend I have spent so much time in the bathroom doing enemas that don't work well, and feel Sooooo ill..... today I told my husband that an ostomy sounded like a very welcome relief!!

In the meantime, I'm still learning more about it and praying a lot.

Thanks and love,
KAP

Post Edited (KAP) : 5/4/2008 6:06:14 PM (GMT-6)

Posted 5/5/2008 1:32 AM (GMT 0)

KAP, I'm sorry you've been feeling sick this weekend. You're in my thoughts and prayers.

I've been married 10 years and also chose not to have children, because of my illness. My husband has been very supportive and is so happy that I'm healthy again, which has really helped me accept having an ostomy.

You had great questions! To answer them, an ostomy does not hurt, and they make wafers for people with sensitive skin. The bags don't make any noise, but sometimes my stoma will sputter a little first thing in the morning while I'm sipping my coffee, but I'm the only one who hears it.

There is absolutely no odor, except when you empty the bag, but that can be avoided by putting a capful of hydrogen peroxide into the bag when it's empty. If you do that, then there's no odor when you empty.

I empty it every time I go to the bathroom to pee, which is about 5 or 6 times a day. The bags have velcro closures on them, so all you do is sit on the toilet, un-velcro the opening, let it empty into the toilet, wipe off the end, and re-velcro it. It's that easy!

I change my wafer once a week, and it only takes a minute to cut a hole in it and stick it on. The bag then clips onto the wafer. The bags have a cloth, flesh colored covering, so you can't see the contents. I sometimes wear a mini bag, which is good for intimate times with hubby. :-)

Irrigation is for people with colostomies (I have an ileostomy). From what I understand, they can give themselves an enema, empty the contents of their bowel, and not have to wear a bag.

Hope that helps!

Cecilia

Posted 5/12/2008 3:37 PM (GMT 0)

Hi Cecilia,

Sorry for the delay in replying. I really appreciate you answering my questions! They helped encourage me even more.

A few more questions, if that's okay?  How big are the bags? Do they come in different sizes?

And what exactly is a stoma and what is a wafer, and how big are they?  Sorry to bombard you, but I really have no idea about any of this stuff yet. Thanks so much for answering everything. :-) Also - would it be okay if I email you sometime? If not, I would understand completely and can keep posting here. But just thought I'd ask.

Take care and have a great day! tongue

Posted 5/12/2008 11:28 PM (GMT 0)
Hi KAP,
You can email me anytime! :-) Just click on my screen name, and you'll see my email address listed there.

You ask really good questions! A stoma is the part of the intestine that the surgeon pulls through your tummy. It's about the size of a strawberry, and looks like one too!

The wafer is round and flat and has an adhesive backing that sticks to your tummy. It's about the size of an orange. (I just finished eating some watermelon, can you tell that I have fruit on my mind?!) You cut a hole in the wafer for the stoma to show through, and the bag clips and locks onto the wafer.

Bags come in all different sizes. The smallest ones are called mini's, and they're only a few inches long, and the longest ones are called maxi's, and they can be tucked into your underwear.

I'm glad you're feeling encouraged by learning more about all of this. I look forward to e-chatting with you!

Cecilia
Posted 5/14/2008 8:12 PM (GMT 0)
As a lurker from the Crohn's board, thank you from me too for the responses!
Posted 5/21/2008 2:32 PM (GMT 0)
Hello HISWILL,

I just wanted to know if the pain is subsiding for you. I really hope it is, and if it's not yet that it will very soon! :-)

Also wanted to know if before you had the surgery, did you have acid reflux and/or hiatal hernia from all the waste backing up? I have this very badly. Have been seeing a chiropractor for the hiatal hernia, but I'm not having progress I think b/c everything is backing up and pushing all this gas and stuff upward. I'm just wondering if you had problems like this before surgery, and if you're doing better now.

Also, did you lose any weight from the surgery? And is the bloating gone now? I'm really so glad you're feeling better than before the surgery. I can't wait to feel better someday!!

Thanks and take care. :-)
Posted 3/20/2014 2:15 AM (GMT 0)
KAP,

I found another post here from you on the ostomies board! I too have a hypertonic anal sphincter problem and it is destroying my life. Enemas everyday. Where are you? Can anyone help me find KAP? Kim is the only other person in my 15 years struggle that I've found to be suffering with the same condition.
Posted 6/4/2014 8:43 PM (GMT 0)
Someone please help me contact KAP (Kim)!
Posted 6/5/2014 2:20 AM (GMT 0)
I have no idea who that is, but I have an ileostomy due to colonic inertia and pelvic floor dysfunction... I did enemas everyday and took many laxatives. I had botox injections into the spincter muscle, but it did not help. I did biofeedback, again, this did not help. My only option was to bypass the rectum altogether and that's why I now have an ileostomy. I also had my paralyzed colon removed. Life is much better now.
Posted 6/30/2014 8:42 PM (GMT 0)
answers4me2,

Thank you for replying to my call. KAP's story sounded exactly like mine, and yours sounds similar too. I've confused many a GI doctor, they keep pushing the Miralax, but no matter how soft it gets, it just won't come out on it's own. I need 1.5 to 3 7.8oz (double size) fleet enemas every single day just to exist. If I don't evacuate daily (every 12-24 hours) I get severe muscle spasms in my sacrum and out to my hips. I feel wonky from using so many fleets and it the process takes me 3-6 hours everyday, sometimes twice a day. It has completely disabled me.

One doctor recently diagnosed me with a hypertonic internal anal sphincter (the involuntary one) and has told me I was a sample of one, and there was no way to help me. I'm not sure if that is my problem or not, because I'm doing so many enemas, I'm afraid that is why my IAS is tight -- it's too overworked. He told me my only options were either take a ton of Miralax to keep the consistency liquid, or an ostomy. I took a colonoscopy dose (like 1/2 gallon) of miralax, and nothing.

Someone else mentioned Lateral internal sphincterotomy (LIS), which scares me, just like ostomies do. I'm ready to do anything that will help me get back my life, but i've already tried so many meds, implants, and other therapies that have not worked, I'm fearful I'll end up in the same place, locked in the bathroom all day long but with more scars.

Can you tell me more about your evacuation disorder? What tests helped lead you to an ostomy being the right solution for you?
Posted 6/30/2014 9:44 PM (GMT 0)
T.MC, have you been seen by a colorectal surgeon? Even if surgery is not in your future, I believe a colorectal surgeon would understand the situation and potential treatments the best (better than a GI). IAS issues like you have are not common, but milder IAS issues are one of the primary causes of anal fissure (of which LIS is a treatment), which any colorectal surgeon would be familiar with. I think a colorectal surgeon at a large teaching hospital would be interested in your case, as well as familiar with similar cases or willing to do the research to find them.
Posted 7/2/2014 4:46 AM (GMT 0)
I had many tests. CT scans with and without contrast, sitz marker tests, defecography, anorectal manometry, balloon expulsion test. Most very humiliating, but they showed a non-relaxing puborectalis muscle, a paralyzed colon.

Nothing helped to resolve these issues and they only got worse and worse. I had to take mega doses of laxatives and some serious and time consuming bathroom acrobats that took hours of my time everyday and were disgusting.

I was sick and nauseas most of the time, and I was not a good mom or wife due to being so ill. One doctor said, well, at least this isn't cancer. I wanted to slap his ass. My quality of life was nothing and I even considered suicide to escape my misery.

I could not eat any fiber because this only made the constipation worse. I could go 5 weeks with no bm. I looked 7 months pregnant most of the time. When the 3rd colorectal surgeon suggested a bag, I told him he was crazy and left his office in a huff. I thought a bag was the worst thing that could ever happen to me.

Since these were 'functional" problems, there was no surgery, no medication, no cure. I tried biofeedback, botox, having the sphincter muscle clipped, TWICE, to no avail.

A year of researching and more misery, I went back to that colorectal surgeon and said I'll do whatever will give me my best quality of life. He suggested a temporary loop ileostomy to see if this would rest the rectum and eventually cause it to work. He had me do more testing and said my rectum just was not taking orders from my brain anymore.

So, I went and got that temporary loop ileostomy. From day one, I was a
million times better. I could eat and I wasn't nauseas constantly. My time spent in the bathroom was a thing of the past. I said I will never get this taken down and why didn't I get the ileostomy years ago!!!!

So I now have an end ileostomy. I went back and had my useless colon removed, and the doctor said it was huge, mega colon basically.

I know I'm rambling, but there is my story in a nutshell.
Posted 7/7/2014 12:38 AM (GMT 0)
T.MC

I was born with a mild case of Spina Bifida, which went undiagnosed until age 20. I am now 36. It caused severe nerve damage to my bowels and bladder. I was unable to control my bladder function--had a LOT of leakage, and when I would try to go pee, I was unable to empty my bladder, not even close. Ended up having a bladder augmentation and I now catheterize thru a small stoma in my abdomen. As for the bowel stuff, I have had chronic constipation for my entire life. And, at the same time, I had total bowel incontinence. What a mess! I attempted to just deal with it on my own (due to shame and embarrassment) until January of this year. For some reason, it had gotten a lot worse. I can count on one hand the number of times I've had a BM this year without the use of multiple meds and laxatives. It has gotten to the point now where I do not have any BMs "on my own". I have to do a "purge" every 10-14 days, where I drink the bowel prep solution (that people use before a colonoscopy) combined with other meds and laxatives. Not fun! I have done biofeedback, which was unsuccessful, and thru the manometry testing I found out that my muscles are not only incredibly weak, but also react opposite to what they should do. They relax when they should contract and contract when they should relax, making it pretty much impossible for anything to get past them. I also have some degree of colonic inertia, and significantly decreased sensation, which just makes it even crazier--I cannot at all figure out how to use my muscles/determine what they are doing, and it's super difficult to even tell when I am going to have a BM/when there is stool there.

I am scheduled for a bunch of very specialized testing to get as much detail as possible about what's going on inside, which parts are functioning, which aren't. After that, the plan is to go forward with surgery to remove part/maybe all of my colon and whatever else isn't working, and leave me with a permanent ostomy. (Unless they discover something new during the testing.) I'm sort of looking forward to having the surgery so I won't feel nauseous and bloated and just sick all the time. Of course, there's also a lot of anxiety about it--it's a big deal, life altering. But as my GI doc said, it may be the one option that could give me my quality of life back.

Sorry for going on and on, just wanted to share my experiences with you. Not sure I was of any help, but I'm curious to know more about your situation.
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