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So embarrassed please help

Constipation Fissure Pain Gas Laxative Bloating

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#1 GilmoreGirl

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Posted 04 June 2017 - 10:46 AM

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This is very embarrassing for me, and I really would appreciate if people could refrain from any joking or judgement. I really just need help


When I was twelve I developed an eating disorder and I believe this is how all of this got started. I developed a need to stimulate bowel movements with a gloved finger to relieve my feeling of bloatedness. I'm now 25, and recently got a chronic anal fissure (probably from doing this) and other damage to the area including possible perineal descent and hemorrhoids. I have all the will in the world to stop doing this - but it seems impossible. I'm plagued with never ending stomach pain, cramps, bloating, and gas that won't pass unless I do this. I have been able to go naturally using laxatives, and try to use a bulb enema or suppository when I can, but my body is adapting to these things and I'm left in more and more pain - the only thing that relieves the pain and discomfort is using my finger to stimulate a bowel movement.

I'm going to see a colorectal surgeon this week and I would like to talk to him about this, but I'm so scared of being judged. It's all from a silly mistake I made to start doing this when I was young - I couldn't even tell you how or when exactly it started. I can't go anywhere or do anything after eating or in the am until I have a bm, the pain and cramping is so bad.

There is nothing at all related to sexual gratification involved in this - it's simply a way of relieving pain for me, and has sadly become necessary in order for me to live my life. The longer it has been since I've stimulated a bm, the worse the pain and cramping gets.

How can I bring this up with him? I've seen people on other forums with similar issues, but I feel like a horrible freak. I'm suicidal at this point because I feel that I will be stuck with this forever, my life is centered around bowel movements. I just want to be a normal person. I've really been trying not to, hoping the pain will pass and I'll go naturally, but the pain gets worse and worse, I literally cannot work or go to school at all at this point.

I was thinking on writing it down and giving it to him so I don't have to say it. I don't know I'm just so scared and need some advice.

Thanks for your help

#2 annie7

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Posted 04 June 2017 - 01:52 PM

oh i am so sorry you feel this way--really--my heart goes out to you.  i can understand why you feel embarrassed about it but please don't be.  there are a number of people who have to rely on digital bowel stimulation in order to go.  it's nothing to be ashamed about.   i've read posts from people who do this.   also people with spinal cord injuries have to do this in order to have a bm.  and it's also recommended in bowel retraining programs.  there are digital bowel stimulators  for sale online.  and yes, of course it would be nice if you could have a bm without doing this but if you have to do it, that's ok.  in the world of constipation, we do whatever we have to do in order to go.

 

as far as talking to your colorectal surgeon about it--please don't worry about being judged.  doctors--especially c/r docs--have seen and heard it all.  there's nothing they haven't already heard.  possibly you could discuss this with his nurse before you see him, and she can put it in your file so he can see it there before he goes in to see you.   i understand your anxiety about talking to him--truly i do--but please know that you are definitely not a freak or anything like that--you are just doing what you need to do to go.  i'm sure he's had other patients who have also had to do this. 

 

my life was centered around bowel movements, too.  and,  like you, i just wanted to be normal.  but we do what we have to do.  and hopefully  things will change. there are a number of C drugs in the pipeline so there's always hope...

 

good luck with everything.  pm me if you ever want to talk.  take care.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#3 GilmoreGirl

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Posted 04 June 2017 - 03:04 PM

Thanks so much annie7 for your message and kindness, I'm crying now after reading it. I'm definitely going to tell him all because I can't go on like this, and am in the process of waiting for a gastroenterologist to take me on as a patient, so the CRS is my only hope at least for now.

I feel like doing this for so many years may have caused my gut pain...like if I don't stimulate things to move every few hours then nothing moves at all and I have trapped gas and pain. And I can't stimulate anymore because of the rectal pain that I also probably caused...I just hate that this happened and I'm ashamed beyond belief, but I've tried so hard on my own to live naturally and it's not working.

Are there medications that would keep things moving along all day? I take senna before bed and it helps but my body is adapting to it, and by 3 or 4 pm I'm back in pain and all that relieves it is a bm, which only ever happens in the am with laxatives

Again thanks for your message, you're so kind and it feels wonderful to not be judged for this

#4 annie7

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Posted 04 June 2017 - 04:11 PM

oh, thank you so much  for your kind words...

 

yes, do talk to your crs.  hopefully he can get to the bottom of why your gut  has slowed down  so much and what can be done to help your motility.  have you ever had a sitz marker test (colonic transit study) ?   i think there might be meds that can help keep things moving all day. meds like reglan, which is a gut motility stimulator--although that particular med can have some nasty side effects.  still, i know someone here on the board who (quite a long time ago) took it and it helped relieved her constipation. and then of course there are the C meds like linzess, amitiza and trulance.  

 

i was dx'd with colonic  inertia and some other problems and like you, i tried to live naturally without taking laxatives etc but i just couldn't do it.  my colon wouldn't work on it's own and i needed laxatives to go.  i did try the  digital stimulation  but for some reason i couldn't get that to work for me. i also have pelvic floor dysfunction, so maybe that's why digital stimulation didn't work.

 

my body started adapting to senna so i used to rotate my laxatives so it couldn't adapt so easily.  i rotated senna, dulcolax and cascara sagrada.  and i also took milk of magnesia along with the stimulant laxatives which helped me go better.  (don't take milk of mag within an hour of taking dulcolax or you'll get cramping.) i didn't like taking all those laxatives but it was the only way i could go. 

 

i can see why the digital stimulation causes you rectal pain because of your fissures--that must be miserable.  

 

good luck with your crs appointment.  keep me posted.   i do hope things get better for you.  wishing you all the best.


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#5 GilmoreGirl

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Posted 05 June 2017 - 05:31 PM

Thanks Annie7.

I have my appointment with the CRS Thursday and with my gp that same day. I'm trying to plan out what to say but I've had such a bad experience with my doctors so far that I'm nervous about how I will come across. My last gastro found nothing during colonoscopy/endoscopy/small bowel MRI or stool tests...but I was taking antibiotics, morphine and strong anti - inflammatories at the time, so I'm not sure about any of his results. I went into my appointment with him with my parents, because I was in extreme pain from my gut and fissure (like 10/10 pain) and was taking pain meds that made me woozy and not so coherent. He I think took that meeting as a sign that I was not mentally stable, and since then was convinced that anxiety was causing my symptoms and that I was exaggerating my pain. It was a very hurtful meeting and he was very rude to me - thank goodness my parents were there. I had a much better follow up appointment with him where he seemed willing to treat me, and gave me a trial of amytriptyline for three months, and scheduled an appointment for after the three months to follow up. Two days before the appointment his office phoned to cancel, saying he could not help me. They would not say that he was refusing to treat me, but he was. It was devastating for me and now I'm nervous to give the wrong impression to any doctor. I have a better gp now, who is trying to find me a new gastro, but she says it is unlikely to happen since I have had so many tests done already.

I want to cover my bases and ask my gp about h pylori, SIBO and constipation meds, and maybe try treating one of these things. I would also like to ask her about the transit tests you describe, but I don't want to make them think badly of me, like I'm overly anxious or whatever.

And to note, I've seen two different psychologists over several months, and even tried hypnotherapy for this - I meditate and exercise daily yet still the pain comes. The psychologists don't think I have undue anxiety - just a normal amount for a person in my situation.

The pain that bothers me the most is worst in the early evening, or right after eating. All of a sudden in the evening I get very bloated through my whole belly and tight in my chest (whether I eat or not. I have pressure in my chest and a feeling like a stitch in both my sides. It feels kind of like I need to have a huge burp, but nothing happens and I don't really get relief when I do burp. A bowel movement used to always relieve my pain and discomfort - but now it doesn't seem to always do that. And the pain is more upper gastro than lower recently. I also burp a lot (and large burps not small ones) despite taking enzymes, peppermint capsules, gas x, reglan, etc. I really suspect I have h pylori along with the transit issues I've caused - I've never had upper gastro symptoms before taking naproxen and morphine for a month, and I was not eating much at the time (because the fissure was so painful and the morphine made me throw up). I know strong anti inflammatories greatly increase the risk of h pylori. I just don't know how to get this across to my doctors without them thinking I'm researching and obsessing and crazy (I'm also a biology/physiology grad student so I know too much to begin with).

I already take reglan and I think (but I'm not sure) it has helped. I think that's a great idea to rotate the laxatives. I don't think I need a stool softner as things are soft still.

I also have pelvic floor dysfunction and see a pelvic physiotherapist about it - probably something I caused with this habit. Everything used to relax and I would be able to go easily, now as soon as I try and stimulate at all everything tightens right up and clams shut.

Anyways, sorry for the rambling post. I just am scared about how to present this to the doctors so they take me seriously. And I also wanted to get all my symptoms across - I've read of other people using digital stimulation but it's not necessarily associated with the pain I have - so I don't know if they are the same issue or different ones.

I can't do anything past 4 pm most days. It's exhausting and I've lost so much from this. I had a boyfriend before all the fissure business happened and I miss him so much - I just want to hang out with him in the evenings when he's done work. But I feel so bloated, painful, and uncomfortable all I can do is sit with a heating pad. Every day. I'm fighting the depression this is causing, and I'm positive when I feel good, but every evening when I feel sick again my mood crashes.

Thanks to anyone who takes the time to read my post - sorry it's so long. I'm just exhausted from living like this and I can't face a future where my every decision is limited by my gut

#6 willow_tree

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Posted 05 June 2017 - 09:50 PM

I just wanted to chime in and say that I'm thinking of you, and I hope you find answers and ways to help, soon! No judgment here, please don't be ashamed of anything. All you're searching for are ways to make yourself feel better, and what we are all dealing with can be extremely debilitating on different levels. 

 

I'm 27, and my symptoms have been so bad at times, I've felt like my life was over at such a young age. I'm struggling with anxiety and depression, but I'm working with my GI and a therapist to help me along. 

 

Stay strong. You've got a community here. And please keep us posted!



#7 annie7

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Posted 06 June 2017 - 07:49 AM

hi gilmore girl

 

that was really rotten of that  gastro doc to drop you like that but perhaps you are better off without him. he doesn't sound like a very proactive or compassionate or knowledgeable doctor.  he should have listened  to you and done everything he could think of to help you.  and he should have taken into consideration all the meds you were on at the time.

 

i wonder why your GP thinks she won't be able to find you a new gastro because of all the tests you have had.  tests are good--they help a doc figure out your problems and diagnosis  and treatment plan.  i had lots of tests and when i saw a new gastro and also my cr surgeon, they both found them quite helpful.

 

it's helpful to make out a list of everything you want to talk to your doc about.  i've found that doctors--the good ones, at least-- really do appreciate this--it helps them.  and it shows them that you are proactive and organized and have thought all this through--not obsessing and crazy.   like you, i also researched everything and found that my docs appreciated that..  your gp sounds like an understanding person so i don't think she will think badly of you for asking her about h pylori, sibo, constipation meds and the transit test etc.   on my first visit to my gastro doc, i  told him (nicely, of course) that i wanted to take a sitz marker test (transit study) because for years docs had been telling me that i "just" had ibs but i really felt that there was more going on than that.  he agreed to the test and sure enough, i had a lot more going on than ibs.  i also read up on the different C meds and asked if i could try those as well, to which he also agreed.  a good doc will listen to you--and will work with you--you are a team and a good doctor realizes that. 

 

i also have pfd. that's good that you are going to a pelvic floor physiotherapist. it can take a while (took me a year--i was a tough case)  but biofeedback and physical therapy can really help teach those muscles to relax.

 

good luck with your upcoming appointments.  please do keep us posted.  


these are just my own thoughts. for expert medical advice please contact a health care professional.


#8 annie7

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Posted 08 June 2017 - 04:28 PM

how did your appointments go today?  hopefully they went well....


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#9 GilmoreGirl

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Posted 08 June 2017 - 04:33 PM

Thanks guys for your kind words, I really really appreciate the support as I'm feeling really alone.

Unfortunately things did not go well with the CRS. He read my file before the appointment (with notes from previous GI about how anxiety ridden I apparently am) and didn't even ask me any questions before doing an exam. I had to try and tell him mid exam about the issues I currently have, and didn't even get into detail. I was hoping to have a frank discussion with him but he barely let me get a word in. Said my fissure is healed and to continue to see the pelvic floor therapist. I asked him about weightlifting (which was my passion before all this and essential to my job as a personal trainer) and he flat out said to avoid it completely, without question, and to find another job if I can't do it without lifting. It was a heartbreaking and pointless appointment - he merely told me to take fibre and drink water. I told him I couldn't tolerate fibre with the gut pain and that I have no gastro to help me, and he didn't offer any other suggestions except for to get exercise, which I do already.

My gp was slightly more helpful but not willing to run any tests and no referral to a gastro has been made yet (I doubt it will be made). She did listen to me as I explained the issues I have and agrees it's not good. She prescribed constella for me to try - but I read after the fact that this works by drawing water into the stool. I already have soft stool and when I've taken stool softners before, they've only made it harder to go (the stool is too soft and doesn't come out easily with the pfd).

I'm so frustrated and tired. I've seen two psychologists (just made an appointment with a third - a psychiatrist this time), two osteopaths, a dietician, a functional medicine doctor, two gps, the CRS, my general surgeon, the pelvic physiotherapist, a general physiotherapist, a visceral manipulation therapist and even a hypnotherapist and I still have discomfort at all times and pain at most, along with difficulty going to the bathroom.

I was really hoping one of the doctors would say "don't worry, we're going to get to the bottom of this no matter what" but they all don't think they can help.

I've lost my job, taken leave from grad school, lost my boyfriend and many friends, had to give up my passion of fitness and weightlifting, had to move home with my parents, eat an incredibly restrictive diet, and don't enjoy a moment of my life. When I try and remember the last time I enjoyed myself I can't. I'm sorry for all the complaining, I just need to write it down or it feels like I will burst with the pain of it all. It's exhausting and makes life feel worthless.

Thank you all for your support. Any ideas going forward would be so appreciated. As well, if anyone has had any experience with Constella I would like to hear it.

#10 annie7

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Posted 09 June 2017 - 07:54 AM

oh i am so very sorry that your appointments did not go well! how very frustrating and disappointing!

 

that's really a  shame that your c/r surgeon did not spend more time with you and listen to you.  i wonder why he doesn't want you to do any lifting?   is it because of the fissure?  how unfortunate that is, especially with you being a personal trainer. i'm so sorry.

 

and i'm sorry that your appointment with the gp didn't go so well,  either.  she really should refer you to another gastroenterologist.  as a patient, you have the right to see another gastro doc for a second opinion--that's your right as a patient.  you may have had a lot of tests but it sounds like you never had a sitz marker test (colonic transit study), which would be a very helpful test for you to have. also, like you said, it would be helpful to be tested for sibo and h pylori. 

 

even if you think constella won't help you, it would be a good idea to give it a try.  that's the only way you'll know if it will help or not.  it does help some people.  here in the usa, constella is called linzess.  there are ways to tweak linzess if it doesn't work for you.  my gastro doc did research and ran clinical trials on linzess.  he told me that it works on the same receptors that food does.  the closer you take it to eating, the faster it will work and the more D you'll get.  the way it's prescribed, you take it 30 minutes before eating.  if it doesn't work for you that way, try taking it closer to eating--like 15 minutes or even 5 or 10 minutes before.  i tried this and found that he was right.  or, if you're getting too much D from it, try taking it an hour before eating or even longer.  sometimes people have to experiment with it to see what works for them.

 

have you tried prucalopride (resolor--i think it's called restoran in canada) ?  it's not available in the usa and i really wish it were--i really wanted to try it.  prucalopride helps with motility--it's not one of those adding-water-to-the-stool meds.  it helps with gut motility.  it works a lot like zelnorm did, but with a better safety profile.  i've read a lot of posts from people who say it really works for them.  if constella doesn't help you, ask your gp for a script for prucalopride.

 

 

      https://en.wikipedia...ki/Prucalopride

 

 

again--i'm so sorry.  i really hope your gp gives you a referral to another gastro doc soon  so you can get the tests you want and some good advice and help.  usually gastro docs who work at university hospitals or motility clinics are more knowledgeable, up-to-date and proactive about treating chronic constipation than other gastros.  


these are just my own thoughts. for expert medical advice please contact a health care professional.


#11 GilmoreGirl

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Posted 09 June 2017 - 08:07 AM

Thank you so much for your help and advice.

I have a small perineal descent (prolapse) which may have been the cause of the fissure, and am working with the physio to strengthen my pelvic floor. This likely happened because of all the digital stimulation I had to use for bowel movements - my pelvic floor weakened and the fascia collapsed slightly. He says I'm too young to be having these issues so to stop weightlifting altogether. I've heard different things from my gp, physio, and CRS about weightlifting, but I was really hoping he would say not to worry about it or at least just to ease back in slowly. It's very depressing at the moment - I managed to make an appointment with a new psychologist, but the depression is overwhelming and the only thing that helped was going to the gym and trying to get back to routine. Now I feel that I can't do that, and even if I do i will be worrying the whole time about destroying my pelvic floor.

I will definitely ask my gp about restoran if the constella doesn't help. I really appreciate your tips about the constella and I'll keep them in mind as I try it. How long should I wait AFTER eating to take it? I normally have some dinner around 5 and then a snack before bed at 9 ish - is it ok to take between the two meals (both small)?

I think I will phone and make another appointment with my gp and bring one of my parents with me. I just need them to listen and realize how worthless my life is like this. I also think maybe I should get a referral to a urogynocogist or sports medicine doctor about the pelvic floor issues - I need to know for sure whether I will hurt myself lifting.

Scared and tired, it's really hard to get through the day like this. It's only 9 am here and I can't wait to go sleep tonight, it's a horrible feeling

#12 annie7

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Posted 09 June 2017 - 08:32 AM

the prescription instructions say to take constella before eating your first meal of the day.  sorry-- i don't know anything about taking it after eating.  most people take it in the morning, before breakfast.  it works best if you have a warm breakfast with some healthy fat in it. also, be sure and drink a lot of water with it.  we have a number of linzess threads here on the board. i've read that some people have tried taking it at night several hours after dinner (but no snack later) and then they have a bm in the morning.   if you take it at night between dinner and a snack--well, i don't know.  just a guess but you might get a lot of D if you take it that way.    you could be up all night..

 

i can see why your crs said no weightlifting if you have perineal descent.  although you're getting conflicting info from your other docs, so that makes it confusing.  and of course you don't want to destroy your pelvic floor.  what a dilemma. i do wish there was a way that you could still do your job without having to lift heavy weights. that's a good idea to see a sports medicine doc.  hopefully he/she will have some ideas and help for you.

 

and yes, it's a good idea to take one of your parents with you for your next appointment with your gp.  i always get copies of my visit notes after i see a doctor--i like to know what they are saying about me!  i ask the nurse for the visit notes.  the way our health system works, the gp also gets copies of the visit notes from all the specialists too. 

 

i understand what you mean about getting through the day. i have chronic pain from continual migraines and other health issues.  i have to claw my way through the day. i just try to take it one minute at a time....  good luck with everything..


these are just my own thoughts. for expert medical advice please contact a health care professional.


#13 GilmoreGirl

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Posted 09 June 2017 - 03:42 PM

I'm sorry about your chronic pain - I certainly can relate and it's exhausting.

Again, great advice and much appreciated. I ate a small dinner at 4 and normally take senna with it. Instead, I will take a dose of constella around 7, small snack at 9. If it gives me diarrhea I will change it up. Luckily I have absolutely no commitments for the next couple of days so even if it does wake me in the night or I'm in the bathroom frequently it shouldn't be a problem. I really would rather have a bm in the morning and my gp said to take it at night in order to do so.

I never even thought about asking for appointment notes but I should have been doing that earlier! Will see if I can from now on.

I just got an appointment in a couple of weeks from a pelvic floor physio who is a competitive weightlifter - she is sure she can help me out, and is the best pelvic physio in my area.

Thanks again

#14 annie7

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Posted 09 June 2017 - 03:52 PM

good luck with linzess.  hope it works for you.  it does come in three dose strengths--72 mcg, 145 mcg and 290 mcg so you can have the doc adjust the dose if necessary. hope it works the way you want it to. if it doesn't, try adjusting the dose amount or try taking it before breakfast.

 

that's wonderful that you got an appointment with a pelvic floor physio who is also a weightlifter!  abd even better that she thinks she can help you--hooray!  

 

good luck with everything and keep me posted--thanks. 


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#15 GilmoreGirl

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Posted 09 June 2017 - 04:48 PM

Thanks! I just actually phoned the pharmacist to ask her about it - and she said the same as you, so I will take it in the am 30 min before eating and hope it works wonders. I did take senna tonight as I usually do, but I suppose if i go too much tomorrow I can back off the senna. I think I was a little worried that the constella would bring liquid into my bowel but not move thins along (like when I last took a colonoscopy prep it didn't work for almost 24 hours).

I'm very happy about the physio. I don't see her until July but I'm looking forward to it.

Thanks again

#16 annie7

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Posted 10 June 2017 - 07:19 AM

oh that was a good idea--calling the pharmacist!  

 

hope constella worked for you!

 

i had the same problem with my last colonoscopy prep--it took hours to work and i was still full of prep gurgling around in there when i went in for the procedure.  they had to suction me out before they could do it.


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#17 GilmoreGirl

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Posted 10 June 2017 - 08:33 AM

Well...I took it at 5:30 am, ate at 6:00 am...it's now 9:30 and nothing has happened besides a little stomach rumbling. Frustrating because I was hoping it would work quickly as others have said - I don't feel well in the morning until I have a bm so I'm just sitting around waiting for it to happen as usual. I don't know whether to try before bed tonight or just keep going with the am doses and hope it starts to work.

Those colonoscopy preps are the worst. I've had 2 colonoscopies and neither time was a breeze. Had to do one to clear me out post op as I hadn't gone for over a week. It was awful.

#18 annie7

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Posted 10 June 2017 - 08:40 AM

oh dear--so sorry!   are you taking the 290 mcg dose? or the 145.

 

if it were me, i would try taking it tomorrow morning 10 or 15 minutes before eating.  or even take it  with breakfast.  that should get it working. and make sure you drink lots of water with it and eat a warm breakfast with some healthy fat in it...

 

i understand what you mean about not feeling well until you've had a bm. i was like that, too.  i just feel too bloated, gassy, stuffed up and miserable when i couldn't have a bm..


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#19 GilmoreGirl

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Posted 10 June 2017 - 11:48 AM

I'm taking the lower dose. I had to use an enema this morning to go and it's like everything is in slow motion. It's like the constella got everything to move to my lower abdomen, but it has no "propulsion" to come out if you know what I mean. I don't have pain yet, but I'm just extremely bloated and uncomfortable - more than usual for sure. Is there any reason why linzess would actually make the rectal muscles work less? It feels like that's what's happening, it's all just sitting there. It was better with senna where I would actually have an urge to go, have a bm, and be mostly done and feel good for at least a few hours.

I even went for an hour walk hoping I would get the rest out but nothing but gas.

Argh, I was hoping this would work. Perhaps there's a reason my gp said to take at night...or maybe it takes a couple of days to work? I will try again tonight or tomorrow and if it's not helped by tomorrow or Monday night I think I will call it quits rather than fill the expensive prescription (just using the sample now).

Thanks again for all the advice. I've been reading the linzess threads and I'm not super impressed, it didn't seem to really help a lot of people. Maybe the restoran that you mentioned would be a better fit.

#20 annie7

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Posted 10 June 2017 - 12:10 PM

so sorry that linzess still hasn't worked and that you had to do an enema.

 

i don't know why your gp said to take it at night.  that kind of advice is generally for people who are having too much D with it.  they take it at night, on an empty stomach, a few hours after eating dinner and then (if it works)  they have a more solid bm in the morning and not as much D.  so maybe she said that thinking that you'd have too much D when taking it as prescribed.

 

since linzess is not a laxative--it's more of a bowel regulator--it works best if if you're not already backed up when you take it. if you are backed up, it's best to do a clean out first and then try it. 

 

linzess generally works right away but i have read some posts from people who said that their gastro doc said it could take a week or so to kick in.

 

if i were you, i would take the 290 dose (two of the 145 pills) in the morning 5 or 10 minutes before eating or even WITH breakfast.  linzess works on the same receptors that food does, so the closer you take it to eating, the faster it works and the more D you get.  when i took 290 mcg with breakfast, i had lots of D.  it only worked once for me when i took it 30 minutes before breakfast.  i couldn't find a happy medium with it, so i quit taking it.

 

restoran increases peristalsis --and propulsion--so yes, it should work better for you.  i wanted desperately to try it but it's not available in the usa.


these are just my own thoughts. for expert medical advice please contact a health care professional.






Also tagged with one or more of these keywords: Constipation, Fissure, Pain, Gas, Laxative, Bloating


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