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I saw my colorectal surgeon today.. at last!

2K views 17 replies 4 participants last post by  annie7 
#1 ·
Hello everyone! I am writing to share some good news from my appointment with colorectal surgeon which I have been waiting for 2 months. I spoke with him about my constipation/incomplete evacuation thing, excessive straining and he agreed with me that this could be due to my pelvic muscles not working properly. So, the good news is - he is going to send me for some testing!
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He mentioned the name of the test, but I can't remember it, but he said it is done by using ultrasound scan. I thought defectography is done by using x - rays.
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Does anybody know which test is done for pelvic floor muscles by using ultrasound scan? The bad news is that he said there is nothing else available for me to take instead of Movicol and Fybogel..
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That really disappointed me, because I have been suffering so badly recently, these medications doesn't work anymore and I don't know what to do. He told me to take senna on weekends and the rest of the week movicol with fybogel. But why did he prescribe me senna tablets for 2 weeks (2 weekends) only? I realised that only when I went to the pharmacy with my prescription. Isn't there really nothing else available for me to take apart of Movicol and Fybogel on the daily basis?? What about linzness? Why none of my doctors want to prescribe it to me?

However, overall I think my appointment was very successful, because finally, after 3 years of daily pain and discomfort, I am going to have some tests to be done on me. That really makes me feel much better, even though I am suffering a lot on these days as I can't find any solution to keep myself regular. Thank you for reading this, I would appreciate any comments you may have.
 
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#2 · (Edited by Moderator)
Hi Aidara

i'm so glad you finally got in to see your colorectal surgeon! that's wonderful! you've been waiting so long...

and i'm glad he's sending you for the test. when is it? yes i do wish you could remember the name of the test. is it a dynamic pelvic MRI ?

http://www.cedars-sinai.edu/Patients/Programs-and-Services/Imaging-Center/For-Patients/Exams-by-Procedure/MRI/Dynamic-Pelvic-MRI.aspx

http://www.cedars-sinai.edu/Patients/Programs-and-Services/Imaging-Center/For-Patients/Exams-by-Procedure/MRI/Dynamic-Pelvic-MRI-Procedure-Information.aspx

that's about the only thing i can guess at. i don't really know what kind of testing they do in the UK...

i'm sorry his treatment protocol is a disappointment to you. you could maybe give it a try, at least for a few days, and then if it's not working for you, call his office to leave a message about that for him and see what else he suggests. that's what i always do when my gastro docs have me try something---i give it a reasonable go and then if it totally isn't working for me, give them a call about it and leave a message with the nurse. and they get back to me about what steps to take next.

of course, if you don't want to do this because you're sure it's not going to help you, you've tried it all before etc, you could call his office tomorrow and leave a message saying that, giving your reasons why and ask for an alternative treatment.

and when you call, you could ask all your other questions too--like about linzess (linaclotide)-- as well. that way you would get some answers.

good luck with everything----take care...a least you're getting started with the testing and you're on your way to getting a diagnosis.

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#3 ·
Hi Annie, thank you for your reply. I think I am having MRI scan from what you sent me and what I heave read on google. I think it is going to be the same defectography, but I will have it done by using MRI scanner instead of x - rays. I will know the name of the test and date for sure once I receive my letter by post. It is going be a long wait though.

Annie, I think you are right, I am going to contact my doctor in couple of weeks time regarding my treatment. I just don't understand why they don't want to prescribe anything else for me. I will ask about linzness. I want to try this medicine so badly. If it worked for me, I could have a break from Fybogel and Movicol and hopefully after a while they would be effective on me again. What was your experience with Linzness?
 
#4 · (Edited by Moderator)
maybe your doctor just wanted to start you off on this treatment first to see if it works and if it doesn't then he'll move on to something else, like linzess. like i said, you can ask him about all this and find out why. here in the usa i've been told by my primary doc that many insurances require the doctor to first start out with OTC treatments or, if those aren't available, then the least expensive prescription treatment to see first if those will work and then if they don't, the doc can move on to the more expensive prescription treatment, linzess is a new drug so it is very expensive, at least, it is here in the usa. maybe the NHS has a similar protocol; i don't know.

and often, depending on the situation, it just makes good medical sense to start a patient off on the most conservative treatment first, to see if that works, before moving on to something else.

or maybe he just wants to wait to see what your test results are before he prescribes anything else.. i don't know but you can ask to find out.

i've had to do a lot of experimenting with linzess --experimenting with taking it at different times, etc. it does work but i have some abdominal pain with it so for now i'm staying with my laxatives. but i plan to experiment more with it if my laxatives stop working. please don't let my experience influence you. we are all so different in how our bodies react to medications etc. linzess has helped many people. i have read many linzess success stories both on this board and on other boards.

you could also ask to try resolor (prucalopride) it is another med available in the UK--not quite as new as linzess. it is not available here in the usa and i really wish it were because i would dearly love to try it.

and i also would love to try the peristeen irrigation system, which you also have available over there but here it's only available to a select small group of people.
 
#6 ·
Hi Oceannir
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how have you been? good, i hope...

my gastros and my colorectal surgeon have all told me that because i have pfd, the only surgical option left for me at this point is an ileostomy.

and yes, they've all told me an ileo really isn't the best option for me at the present time since i'm still able to go with laxatives. laxatives sometimes don't work so well and/or leave me feeling a bit bloated and ill but an ileostomy, because of all my other health problems, would be a bit problematic--i'd be quite susceptible to skin problems, prolapses and especially hernias...

hope you're doing ok...take care...
 
#7 ·
Annie, thank you so much for your post. It gives me hope as I know that there is plenty of things to try. I am sure those medicines (linzness, prucalopride and Persiteen) are very expensive, that's why it won't be easy for me to have them prescribed. I believe, that my surgeon wants to wait for my test results before offering me any other treatment. What I can't understand is whether it is really about the price or stimulant laxatives are safer then prescription medicines as it is so easy to get prescription for senna or biscodyl.

However, I decided to learn to live with my symptoms. At least till I have my test done. I have no other choice, because I don't want to start on senna as I know that it would definitely give me relief and I won't be able to stop it. I am too aftraid. Ive been having incomplete evacuation almost daily for the last couple of months. It makes me feel miserable, I am having lots of pain due to my haemorrhoids and fissure not to mention extreme bloating. I am just taking one day at a time and keep thinking that there are people who are suffering from worse conditions and that helps somehow.

Annie, one more question. You are taking stimulant laxatives and you mentioned that they don't always work. How often do they fail? Do you increase the dosage of your medicines if this happens? How often do you have 'bad' or 'good' days? I am asking because I am wondering if I am expecting too much from my laxatives. Should I expect them to be working every single day?
 
#8 · (Edited by Moderator)
really, we're all different in how our bodies react to any meds, otc or otherwise or stimulants, whatever...

what i mean when i say the laxatives i take don't always work is that--for me--they don't always work completely. there is still stool in there that doesn't come out. and that leaves me feeling bloated, gassy, very uncomfortable/painful.

but--again, for me--when this happens, the stool is not trapped in the rectum. if i can get it to the rectum i can get it out. i have slow transit constipation--as well as pfd. i feel the biofeedback has helped me get stool out when it is in the rectum. and my footstool (shoe box actually) helps with that too. but because my colon does not work by itself, i need help moving stool through the colon to begin with. that's why the laxatives are needed. and sometimes the laxatives move it through to the rectum quite well and other times they don't . i do always "go" though--everyday. so that is wonderful. and i am thankful for that. i develop impactions very easily so i have to keep things moving, is what all the docs and surgeons have told me. .

and no, i don't increase the laxatives when they don't work so well. i find generally my body will sort itself out in a day or two.

also--i have rectal hyposensitivity and megarectum so i don't get an urge without the help of laxatives. i'm a complicated case--lol..

i really can't speak to what you should/could expect from your laxatives---because that's you and your body and --well--sorry. i just don't know how to answer that...

and yes, i take one day at a time, too. really, that's all we can do. just do the best we can with however our bodies feel that day.

and yes--never, ever , ever lose hope. there are plenty of things to try and new drugs in the pipeline.
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#9 ·
Aidara, that is so great! I'm glad your doc actually knows enough to know that your muscles are probably the culprit here. I am guessing he is sending you for a defecography, also known as a defecogram. If he isn't then I would insist this is done! I am getting a defecography soon to see which muscles aren't working properly. My thinking is that this would help if I were to get botox in the future - I could show them the imaging and they could shoot to inject those particular muscles. Just a theory on my part I guess we'll see!

The good thing is that your GI doc is wrong about treatment for the pelvic floor. There has got to be a clinic over there for womens urology that works with constipation/outlet obstruction and biofeedback. I would go to a good GP there and ask them if they know of any. You may have to do a lot of research on this. Biofeedback really is the one thing that works at relaxing the pelvic floor. Your muscles are probably tense during the day so it's tough to get an urge and then tense when having a BM. They need to be trained to completely relax. A biofeedback device would tell you where you are at with lighted letters. Then you 'relax down' as much as you can and recreate that same feeling when you're standing, sitting, laying down, walking, etc. I will say this takes a lot of training and time. But it's worth it! I am usually able to have a BM by 'relaxing down' these muscles throughout the morning. Usually after eating. I still struggle on relaxing down when sitting or laying but I've got the standing down pretty well. I find the only 'real' way to know if you're relaxed in a given position is if you can get an urge while in that position.

In my experience, using Miralax and fiber only worked for about 2 years. After that, things just got worse and worse. Even Senna and Dulcolax didn't work. Though MOM does - it just gives me horrible bloating/gas/cramping/pain. I noticed the 'consistency' of my stool didn't really matter so much and only in the past year did I start to get intense stomach pain. Mayo did say the pelvic floor can slow the colon and stomach, which scared me enough to want to do the biofeedback every day for the rest of my life, if necessary.

Another option is Dulcolax suppositories. I find them to be a bit irritating so I use Valium suppositories if I can. If you use these both vaginally and then rectally, they work better. Switch them out. Another very necessary component is yoga stretching. I do Happy Baby, Cobra, Childs Pose, Bow and sometimes I'll even squat while looking at my laptop. Squatting is so important but I realize it's tough for some!
 
#10 ·
Hi Oceannir
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how have you been? good, i hope...

my gastros and my colorectal surgeon have all told me that because i have pfd, the only surgical option left for me at this point is an ileostomy.

and yes, they've all told me an ileo really isn't the best option for me at the present time since i'm still able to go with laxatives. laxatives sometimes don't work so well and/or leave me feeling a bit bloated and ill but an ileostomy, because of all my other health problems, would be a bit problematic--i'd be quite susceptible to skin problems, prolapses and especially hernias...

hope you're doing ok...take care...
Hey Annie, yeah I'm doing well. Not cured by any means and I've kind of resorted to taking stimulent laxatives a couple of times a week to keep things going, but I have a higher quality of life with them thats for sure.

That is bad news about not being able to have the complete collectomy, but its good news they're monitoring you and giving you options. I feel a lot of the time the doctors are quick to just throw it in your court. I do kind of agree that an ileostomy would not be pleasant, but there are far worse things that you could get in life thats for sure.
 
#11 ·
Annie, your symptoms sound so similar to mine. I go everyday too, but most of the days I have incomplete bm. You are suffering from so many conditions that it must impossible to go naturally. I know it is difficult, but could you or someone explain what are the symptoms(how do you feel) that stools are in the rectum? I often feel this happening, but I am not sure if my stools are in the rectum or somewhere close to my rectum, how do I know that?

Dreamcatcher, I think my doctor doesn't want to offer me any treatment before my pelvic floor test. He told me, that in order to have it, my anal fissure must heal, but since my medicines are not helping much, I have no idea how is this going to happen. However, he prescribed me some cream, I am praying for it to work, although it is unlikely if I keep straining, let's see.

Tell me, are you completely off laxatives and being able to control your symptoms with biofeedback therapy only? That sounds incredible and so promising.

I use Dulcolax suppositories occasionally, but since they are stimulant wants I don't want to use them too frequently. I use glycerine instead, they are not that effective, but it helps me a bit, especially with incomplete bm.
 
#12 ·
Aidara--often you can feel stool stuck in the rectum--or in the anal canal--by sticking a gloved finger up in there as far as you can go. and then you can feel the stool. and i could just feel it down there without a finger as well.

i used to have this problem a long long time ago, back when--on the advice of my primary care doc (whom i no longer am seeing) --i was eating lots of fiber for my constipation. and i wasn't taking any laxatives back then either. way back then the docs' advice for constipation was just the standard "eat lots of fiber and drink lots of water". i would feel like something was stuck down there and i could even at times feel stool stuck in the opening of my anus but it wouldn't come out. very painful.

i also have a moderately sized rectocele, which is another reason why it's bad for me to have stool stuck in the rectum.
 
#13 ·
Oceannir--oh so glad to hear you've been managing things so well--good for you!

and yes i do wish we could all get cured somehow but being able to manage things and find a treatment plan that works for us is the next best thing.

take care
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#14 ·
Annie, when I use suppositories, I don't feel stools in my rectum with my fingers. But the feeling I have is that they are very low as if they are in my rectum. I just wonder is this still common with pelvic floor or anal spincher disorders. Sometimes, I have a bm, but in the middle of it it stops going, I can feel there is plenty left, but I can't get it out (sorry, for being so graphic) and I loose urge as well. But if I use suppositories afterwards, I don't feel anything with my finger. These things are so complicated, even understanding your symptoms is such a big task. I have been thinking I have constipation, but my main problem seems to be incomplete evacuation, I just didn't realise that before I found this forum.

Also, I have got some wonderful book, called 'Why can't I go? Answer and relief for women with constipation.' by Chris Lahr. It is a wonderful book, it gives me so much knowledge. I just started reading it though. I highly recommend it to every women with these problems, especially who has had vaginal delivery and constipation issues following that.
 
#15 · (Edited by Moderator)
Annie, your symptoms sound so similar to mine. I go everyday too, but most of the days I have incomplete bm. You are suffering from so many conditions that it must impossible to go naturally. I know it is difficult, but could you or someone explain what are the symptoms(how do you feel) that stools are in the rectum? I often feel this happening, but I am not sure if my stools are in the rectum or somewhere close to my rectum, how do I know that?

Dreamcatcher, I think my doctor doesn't want to offer me any treatment before my pelvic floor test. He told me, that in order to have it, my anal fissure must heal, but since my medicines are not helping much, I have no idea how is this going to happen. However, he prescribed me some cream, I am praying for it to work, although it is unlikely if I keep straining, let's see.

Tell me, are you completely off laxatives and being able to control your symptoms with biofeedback therapy only? That sounds incredible and so promising.

I use Dulcolax suppositories occasionally, but since they are stimulant wants I don't want to use them too frequently. I use glycerine instead, they are not that effective, but it helps me a bit, especially with incomplete bm.
Oh good, I hope he offers you treatment AFTER the test. If you have anal fissures that's a clear indicator your pelvic floor is too tight. I get them too. The cream will work! Though I use it sparingly as it can thin the skin. When I get 'little' ones I just use Eucerin Healing Repairing Lotion, peroxide & liquid bandaids and also Tinactin. That's a foot spray for men but it seriously works.. lol! Probably better than the rest. What you're looking to do with the fissures is basically 'dry' them out. So definitely go without pants as much as possible and after baths, use a hair dryer. I'm laughing while typing all of these things but I'm serious when I say they work! Nope, so far I do not have to take laxatives to have a BM. My stool is already really loose (that's part of why I am in so much pain sometimes) and it's all a matter of relaxing my pelvic floor and then holding the urge long enough to where I don't strain. I do have to 'relax down' my pelvic floor while standing and it can be irritating. I think some can do it on the toilet but it's harder for me that way unless I have a 'good amount' in there. I also get spasms which don't help.
 
#16 · (Edited by Moderator)
Aidara---oh yes you are so right--it is so very complicated--at least, that's how it all seems to me.

and yes, like you mentioned, now when i use suppositories i can't feel any stool in the vicinity of my finger when inserting the suppository but i do have the distinct sensation that there is more stool close by up there . and the suppository helps me move that stool out. before i started taking laxatives i'd use a suppository and then i could feel stool in the rectum where my finger was.

that's good you're reading the book by Chris Lahr. i've read some good reviews about it. and good things about him, too. i remember some discussions here on the board from some lucky people who actually got to see Dr Lahr--they all said he was terrific and a tremendous help.
 
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