[Effexorrx]

I'm Effexxorx, and as you can see from my tags, I suffer various mental illnesses. I've had IBS-C for about eight years now, but used to live a so-called regular life, though I don't know what that means any longer. I did have an eating disorder brought about by GIs getting sick of me and prescribing laxatives in enormous amounts, as well as restricting my diet, which led to disasterous results. I nearly died, then finally recieved treatment. It's a long story, very long, and finds me losing everything in the process. I'm on just Constella now, though I do drink some coconut water and eat a couple of stewed prunes every night (no stimulant laxatives for well over two years, and just the Constella every morning with breakfast, 290 mcg, which is a fight with my family doctor and the odd psychiatrist -- when I can see one, another struggle because the shortage of psychiatrists is horrific here -- who label it a laxative when my new GI, pharmacist, and other doctors have told me it's not). I don't know what kind of damage the laxative abuse (more dependence, as the damn things were prescribed, as in "you must take these!") caused, or if the Constella will cause the same problems, but I do know that the anxiety and depression make life and IBS even harder.

I'm usually more articulate than this. However, it's my first time out, and I don't know what to say. I'm 43, alone, suffer IBS-C, mood disorders, mental illness, and have no life at all -- as I mentioned, I lost everything, and don't know how to live with this condition. I'm scared all the time, I hurt physically all the time, and though I'm in eating disorder recovery -- again, no stimulant laxatives at all -- I am losing weight because of stress, anxiety, PTSD, and depression.

Can anyone relate? Am I alone in this? Will the constipation last forever? Is it as tied to my emotional state as my GI says it is?

Suggestions, comments (kind comments), support, or any words of wisdom would be greatly appreciated and looked upon with both gratitude and shared empathy.

Thank you for reading what really is a short introduction, believe it or not.

 

[flossy]

Hi Effexorrx -

To answer your questions, no, you're not alone. There are lots of people with IBS out there. In fact it runs in my family.

Chronic constipation will probably not go away on its own, but as you know you can take something every day to make the condition more manageable. I would have to say your emotional state can be tied to your constipation and sometimes vise-versa. Personally? I have IBS-C no matter what my emotional state is because I believe I have an imbalance in my gut flora, but I know people with IBS-D who's emotional state and IBS go hand-in-hand.

It is interesting how doctors and big pharma like to call their newer constipation meds something other than what they are: Laxatives.

Laxative:

-(Chiefly of a drug or medicine) tending to stimulate or facilitate evacuation of the bowels.

-A medicine which has a laxative effect.

To me? If your constipated and it helps you go? It's a laxative.

Sorry to hear you had bad luck with stimulant laxatives. I've been taking Dr. Schulze's Intestinal Formula # 1 for over 3 years now and have had no problems with it whatsoever. I love it.

Good luck with everything & keep us posted!

 

[stefan00790]

Hi Effexor no first you're not alone in this journey as there is alot of people suffering from IBS - C , you said you nearly die yeah and I was 5 times hospitalized in order to no take off my life because of this murderous condition but in short it is managable you are soo lucky that Constella or Linaclotide is still working for you after those years believe me you are lucky there is people that even those are not working like me so yeah i don't know why are you so afraid of stimulant laxatives i mean they are a medication too and are not harmfull ( i was afraid also) iam taking them daily and iam managing my life now and living happily and iam doing also mediacl researrch for this topic , and yes could i possibly ask how do you manage your psyhological state because you said you have mental issues too .

 

[annie7]

Hi Effexorrx

so sorry for your problems. as the others have said, you are most definitely not alone. a lot of people, both here on the board or elsewhere, suffer from chronic constipation. it is a very difficult thing to deal with. constipation generally does not go away but you can learn to manage it.

your new GI, pharmacist etc are right. technically speaking, constella (linaclotide or, as it's called in the usa, linzess) is not in the same classification as stimulant laxatives. see the link below, in the first paragraph: how Linzess Works.

https://www.linzess.com/ibsc-and-cic-symptoms/how-linzess-works

also here's a link to the FAQ--"how is linzess different than a laxative" :

https://www.linzess.com/ibsc-and-cic-questions/faqs

also--see the second paragraph:

https://irritablebowelsyndrome.net/medications/linzess-reviews-how-well-it-works-and-side-effects/

actually, stimulant laxatives are no longer considered to be harmful. the ones that were considered harmful were removed from the market years ago. i remember when that happened. since none of the C meds on the market worked for me, my gastro docs told me it was safe to take stimulant laxatives in order to go, which i did. they told me that it was better to take laxatives then to get all backed up and risk developing an impaction or, worse yet, as obstruction. here are a some articles regarding the use of stimulant laxatives:

https://www.ncbi.nlm.nih.gov/pubmed/12702977

https://www.ncbi.nlm.nih.gov/pubmed/8234421

https://www.ncbi.nlm.nih.gov/pubmed/15654804

good luck with everything. i do hope that you can find some relief from all your problems. take care.

 

[Effexorrx]

Because I'm not yet certain how to use this support group/forum properly -- where to post, who to post to, what subjects can be discussed, the general intracasies of the entire site -- I'm going to respond here, and put in a request for some help with learning the site and how-to's, if that's okay. I mean no disrespect, but would appreciate any help offered.

I wish to thank Stefan, Flossy, and Community Moderator for your responses, which are incredibly helpful. Suffering through IBS-C is terrible, and, indeed, I'm no longer sure if my mental health (particularly debilitating anxiety that crushes my muscles, especially in the stomach -- I tend to compary my body to a clenched fist, and consider that, due to anxiety, it never unclenches, and never relaxes) is impacting it, or if the constipation impacts my mental health. Generally, I think they work in tandem, like some kind of tag team that never catch each other. It seems like the mind/body connection, the gut-brain connection, have been severed, and I don't know how to get them to speak to each other again, receiving messages from each other in a language both can understand and use to communicate.

To let all of you know, I'm terrified of stimulant laxatives becasue my Eating Disorders treatment emphasized that I'd likely lose my colon unless I stopped taking everything, including Constella/Linzness. I continue to take the Constella/Linzness, although it's not as helpful as it once was, because it's really -- from what I've been told (and still have to fight over with my GP and any ED psychiatrist) -- the only thing I've got.

If I can learn to manage this condition, including the pain that comes with it, it would make life itself manageable. However, I've recieved no adivce on this, other than seek further psychiatric help and eat, eat, eat. So I seek further psychiatric help and eat, eat, eat. Psychiatrists, however, don't tend to speak to the GIs, and while my GI is more than willing to speak to any doctor, both about IBS being a legitmate condition (I've been told multiple times it's all in my head, a made-up illness) and the necessary use of Constella/Linzess, none of them seem willing to listen or even consider a GI's approach.

As I learn to navigate this site, I wish to become both a contributor and someone who will listen and be helpful, as I do have incredible amounts of empathy for anyone suffering through IBS-C (and IBS in general).

I've read all responses, looked at all links, and every one of them is helpful.

Thank you very much.

I'm grateful.

As much as I don't wish to be alone in this, I do not want anyone to suffer through it. It's ruined my life, among other things, which might sound hyperbolic, but isn't; it's all I think about, on top of trying to find my way back to life again after losing everything -- and I mean everything.

Much appreciation and, once more, gratitude,

Effexorrx.

 

[Effexorrx]

I didn't know how to reply to this directly, so please see below, and please accept my genuine thanks and wishes to get to know everyone on this site/support group.

Effe.

Hi Effexorrx

so sorry for your problems. as the others have said, you are most definitely not alone. a lot of people, both here on the board or elsewhere, suffer from chronic constipation. it is a very difficult thing to deal with. constipation generally does not go away but you can learn to manage it.

your new GI, pharmacist etc are right. technically speaking, constella (linaclotide or, as it's called in the usa, linzess) is not in the same classification as stimulant laxatives. see the link below, in the first paragraph: how Linzess Works.

https://www.linzess.com/ibsc-and-cic-symptoms/how-linzess-works

also here's a link to the FAQ--"how is linzess different than a laxative" :

https://www.linzess.com/ibsc-and-cic-questions/faqs

also--see the second paragraph:

https://irritablebowelsyndrome.net/medications/linzess-reviews-how-well-it-works-and-side-effects/

actually, stimulant laxatives are no longer considered to be harmful. the ones that were considered harmful were removed from the market years ago. i remember when that happened. since none of the C meds on the market worked for me, my gastro docs told me it was safe to take stimulant laxatives in order to go, which i did. they told me that it was better to take laxatives then to get all backed up and risk developing an impaction or, worse yet, as obstruction. here are a some articles regarding the use of stimulant laxatives:

https://www.ncbi.nlm.nih.gov/pubmed/12702977

https://www.ncbi.nlm.nih.gov/pubmed/8234421

https://www.ncbi.nlm.nih.gov/pubmed/15654804

good luck with everything. i do hope that you can find some relief from all your problems. take care.

 

[Effexorrx]

Because I'm not yet certain how to use this support group/forum properly -- where to post, who to post to, what subjects can be discussed, the general intracasies of the entire site -- I'm going to respond here, and put in a request for some help with learning the site and how-to's, if that's okay. I mean no disrespect, but would appreciate any help offered.

I wish to thank Stefan, Flossy, and Community Moderator for your responses, which are incredibly helpful. Suffering through IBS-C is terrible, and, indeed, I'm no longer sure if my mental health (particularly debilitating anxiety that crushes my muscles, especially in the stomach -- I tend to compary my body to a clenched fist, and consider that, due to anxiety, it never unclenches, and never relaxes) is impacting it, or if the constipation impacts my mental health. Generally, I think they work in tandem, like some kind of tag team that never catch each other. It seems like the mind/body connection, the gut-brain connection, have been severed, and I don't know how to get them to speak to each other again, receiving messages from each other in a language both can understand and use to communicate.

To let all of you know, I'm terrified of stimulant laxatives becasue my Eating Disorders treatment emphasized that I'd likely lose my colon unless I stopped taking everything, including Constella/Linzness. I continue to take the Constella/Linzness, although it's not as helpful as it once was, because it's really -- from what I've been told (and still have to fight over with my GP and any ED psychiatrist) -- the only thing I've got.

If I can learn to manage this condition, including the pain that comes with it, it would make life itself manageable. However, I've recieved no adivce on this, other than seek further psychiatric help and eat, eat, eat. So I seek further psychiatric help and eat, eat, eat. Psychiatrists, however, don't tend to speak to the GIs, and while my GI is more than willing to speak to any doctor, both about IBS being a legitmate condition (I've been told multiple times it's all in my head, a made-up illness) and the necessary use of Constella/Linzess, none of them seem willing to listen or even consider a GI's approach.

As I learn to navigate this site, I wish to become both a contributor and someone who will listen and be helpful, as I do have incredible amounts of empathy for anyone suffering through IBS-C (and IBS in general).

I've read all responses, looked at all links, and every one of them is helpful.

Thank you very much.

I'm grateful.

As much as I don't wish to be alone in this, I do not want anyone to suffer through it. It's ruined my life, among other things, which might sound hyperbolic, but isn't; it's all I think about, on top of trying to find my way back to life again after losing everything -- and I mean everything.

Much appreciation and, once more, gratitude,

Effexorrx.

Hi Effexorrx

so sorry for your problems. as the others have said, you are most definitely not alone. a lot of people, both here on the board or elsewhere, suffer from chronic constipation. it is a very difficult thing to deal with. constipation generally does not go away but you can learn to manage it.

your new GI, pharmacist etc are right. technically speaking, constella (linaclotide or, as it's called in the usa, linzess) is not in the same classification as stimulant laxatives. see the link below, in the first paragraph: how Linzess Works.

https://www.linzess.com/ibsc-and-cic-symptoms/how-linzess-works

also here's a link to the FAQ--"how is linzess different than a laxative" :

https://www.linzess.com/ibsc-and-cic-questions/faqs

also--see the second paragraph:

https://irritablebowelsyndrome.net/medications/linzess-reviews-how-well-it-works-and-side-effects/

actually, stimulant laxatives are no longer considered to be harmful. the ones that were considered harmful were removed from the market years ago. i remember when that happened. since none of the C meds on the market worked for me, my gastro docs told me it was safe to take stimulant laxatives in order to go, which i did. they told me that it was better to take laxatives then to get all backed up and risk developing an impaction or, worse yet, as obstruction. here are a some articles regarding the use of stimulant laxatives:

https://www.ncbi.nlm.nih.gov/pubmed/12702977

https://www.ncbi.nlm.nih.gov/pubmed/8234421

https://www.ncbi.nlm.nih.gov/pubmed/15654804

good luck with everything. i do hope that you can find some relief from all your problems. take care.

Hi Effexor no first you're not alone in this journey as there is alot of people suffering from IBS - C , you said you nearly die yeah and I was 5 times hospitalized in order to no take off my life because of this murderous condition but in short it is managable you are soo lucky that Constella or Linaclotide is still working for you after those years believe me you are lucky there is people that even those are not working like me so yeah i don't know why are you so afraid of stimulant laxatives i mean they are a medication too and are not harmfull ( i was afraid also) iam taking them daily and iam managing my life now and living happily and iam doing also mediacl researrch for this topic , and yes could i possibly ask how do you manage your psyhological state because you said you have mental issues too .

I didn't know how to reply to this directly -- since learned -- but there is a more substantive reply in this thread. Please know I'm grateful, wish to get to know everyone on this site. Thank you again.

Effe

 

[Effexorrx]

Hi Flossy,

I didn't know how to reply directly to a response or post, so please see this thread for a more substantive reply. Thank you so much,

Effe

Hi Effexorrx -

To answer your questions, no, you're not alone. There are lots of people with IBS out there. In fact it runs in my family.

Chronic constipation will probably not go away on its own, but as you know you can take something every day to make the condition more manageable. I would have to say your emotional state can be tied to your constipation and sometimes vise-versa. Personally? I have IBS-C no matter what my emotional state is because I believe I have an imbalance in my gut flora, but I know people with IBS-D who's emotional state and IBS go hand-in-hand.

It is interesting how doctors and big pharma like to call their newer constipation meds something other than what they are: Laxatives.

Laxative:

-(Chiefly of a drug or medicine) tending to stimulate or facilitate evacuation of the bowels.

-A medicine which has a laxative effect.

To me? If your constipated and it helps you go? It's a laxative.

Sorry to hear you had bad luck with stimulant laxatives. I've been taking Dr. Schulze's Intestinal Formula # 1 for over 3 years now and have had no problems with it whatsoever. I love it.

Good luck with everything & keep us posted!

 

[annie7]

oh you're using the forum correctly

. you've posted in the right section--the ibs-c and chronic constipation board. and you're replying correctly to the posts. as far as subjects are concerned--anything and everything can be discussed here. if you have specific questions about the board, i'll be more than happy to answer them. and you can respond directly to the posts, like you did the first time--that response was just fine. . or you can click on the "quote" button if you prefer and respond that way. sometimes people prefer to use "quote" if they are directly replying to something someone has said.

i going to post this now and then respond to the rest of your post.

 

[annie7]

i think you are right--that anxiety and constipation can kind of work in tandem, like a tag team. yes, there is a mind/body/gut connection. what is going on in the mind can exacerbate what it going on in the body. and vice versa. but ibs IS a legitimate condition. it is most certainly NOT "all in your head."

i really do think that it is a shame that your ED psychiatrist won't speak to your GI doc. your ED psych. needs to realize that your ibs-c is NOT all in your head.

i'm also sorry to hear that your ED treatment emphasized that you'd lose your colon unless you stopped taking everything inclusing constella. i know that sometimes people with ED abuse laxatives by taking boxfulls at a time in an attempt to purge themselves . that's not good. but when taken as prescribed (or as directed by your doc) , laxatives, constipation meds will not damage your colon. i've been reading this and other boards for over 16 years and i've never ever heard of anyone losing their colon because they took laxatives as prescribed or as directed by their doc. your ED psych seems to have a very closed mind. i do wish your could find a different doc but like you said, they are in short supply. still, i wish you could find another one.

you mentioned linzess (constella) not being as helpful as it once was. this happens. there are ways to tweak constella (linzess):

one of my gastro docs has done research and has run clinical trials on linzess. he told me that linzess works on the same receptors that food does. so generally, the closer you take it to eating a meal, the more diarrhea you get. and conversely, the more time that elapses between taking linzess and eating, the less D you get. so the closer you take linzess to eating--ie: 20 minutes before breakfast instead of 30 minutes as prescribed, the quicker it works. generally speaking that is. if taking it 20 minutes before doesn't help, try taking it 15 minutes before or even 10 or 5 . usually that helps. that's what i and others on here have found.

if linzess does stop working and you cannot tweak it, tell your GI doc. there are other C meds that might work for you instead--prucalopride (resolor, restoran) is available in canada (although not yet in the usa) and i've read very good reviews about it. also you might have trulance (plecanatide) available there.

good luck with everything. wishing you all the best.

 

[flossy]

Effexorrx, you could also try taking a few aloe gels a day for the pain in your intestines, they should help, they are soothing.

I used to take these, I took two twice a day for a couple of years:

https://www.amazon.com/NOW-Aloe-Vera-10000mg-Softgels/dp/B00772AQD0?th=1

Good luck & keep us posted!

 

[Effexorrx]

i think you are right--that anxiety and constipation can kind of work in tandem, like a tag team. yes, there is a mind/body/gut connection. what is going on in the mind can exacerbate what it going on in the body. and vice versa. but ibs IS a legitimate condition. it is most certainly NOT "all in your head."

i really do think that it is a shame that your ED psychiatrist won't speak to your GI doc. your ED psych. needs to realize that your ibs-c is NOT all in your head.

i'm also sorry to hear that your ED treatment emphasized that you'd lose your colon unless you stopped taking everything inclusing constella. i know that sometimes people with ED abuse laxatives by taking boxfulls at a time in an attempt to purge themselves . that's not good. but when taken as prescribed (or as directed by your doc) , laxatives, constipation meds will not damage your colon. i've been reading this and other boards for over 16 years and i've never ever heard of anyone losing their colon because they took laxatives as prescribed or as directed by their doc. your ED psych seems to have a very closed mind. i do wish your could find a different doc but like you said, they are in short supply. still, i wish you could find another one.

you mentioned linzess (constella) not being as helpful as it once was. this happens. there are ways to tweak constella (linzess):

one of my gastro docs has done research and has run clinical trials on linzess. he told me that linzess works on the same receptors that food does. so generally, the closer you take it to eating a meal, the more diarrhea you get. and conversely, the more time that elapses between taking linzess and eating, the less D you get. so the closer you take linzess to eating--ie: 20 minutes before breakfast instead of 30 minutes as prescribed, the quicker it works. generally speaking that is. if taking it 20 minutes before doesn't help, try taking it 15 minutes before or even 10 or 5 . usually that helps. that's what i and others on here have found.

if linzess does stop working and you cannot tweak it, tell your GI doc. there are other C meds that might work for you instead--prucalopride (resolor, restoran) is available in canada (although not yet in the usa) and i've read very good reviews about it. also you might have trulance (plecanatide) available there.

good luck with everything. wishing you all the best.

Thank you, Annie, I appreciate all of your advice, as well as the information. My old GI told me to take Constella with food, which I sometimes do, although it seems to make the constant pressure in my lower abdomen even worse, and ends up causing the medication to take longer to work. I'll check into the other drugs you mentioned -- I already have since you posted re. restoran -- but the price is extremely off-putting, in two ways: I can't afford it, and it tends to cause frustration that a drug that could help hundreds of thousands, if not millions (we're a large bunch, IBS and IBS-C sufferers) becomes accessible only to those who have health insurance or coverage under governmental plans (Canada's governmental plan doesn't cover much of anything, I've found, at least not much of anything if you're an IBS patient). Again, thank you. With gratitude, Effe.

 

[Effexorrx]

Effexorrx, you could also try taking a few aloe gels a day for the pain in your intestines, they should help, they are soothing.

I used to take these, I took two twice a day for a couple of years:

https://www.amazon.com/NOW-Aloe-Vera-10000mg-Softgels/dp/B00772AQD0?th=1

Good luck & keep us posted!

Thank you, Flossy, I will definitely look into aloe pills. If they're something that'll help and not hurt, I'll certainly give it a go. I haven't yet found a probiotic that doesn't make me sick (I mean sick, really sick), so this sounds like a great way to soothe. Thank you again, with much appreciation, Effe.

 

[Effexorrx]

Just a quick note to say, once more, thank you to everyone. I know you're all suffering, too, and I wish that wasn't the case. Knowing it isn't "in my head" -- the claim made so many times, along with "pain receptors follow the same pathways as anxiety receptors, so, guess what, it's all in your head" -- does help, and while I always knew it wasn't confined to the space of my brain/mind, getting some doctors (psychiatrists in particular, and any eating disorder docs as well, who view every patient as wanting to be sick in some way, which merely shows how bloody jaded they are, but that's another discussion entirely) to move past their own biases is difficult. I often feel as though I'm constantly throwing myself against a brick wall over and over again, getting bloody, broken, and bruised, with all the effort just to make a single brick dislodge. To get that medical wall to come down entirely might take an entire army of individuals, but I've got myself for now, and keep slamming that wall.

I'll be posting on here more regularly as soon as I can, and wish to be a contributor not just of my own struggles, but a contributor to the whole support group. Offering support is essential with this condition, so misunderstood and waved off by most people, and empathy is what I've got to offer. It's always heartfelt, as are my thank yous to everyone who cared enough to read this and offer words of advice and encouragement.

Please hang in there, all of you.

By the way, I do care -- and I always will.

Effe

 

[flossy]

Thank you, Flossy, I will definitely look into aloe pills. If they're something that'll help and not hurt, I'll certainly give it a go. I haven't yet found a probiotic that doesn't make me sick (I mean sick, really sick), so this sounds like a great way to soothe. Thank you again, with much appreciation, Effe.

I always say if you're chronically constipated? Just say no to probiotics. For most of us here, on the CC side of the board? They just make us more constipated.

 

[Effexorrx]

I always say if you're chronically constipated? Just say no to probiotics. For most of us here, on the CC side of the board? They just make us more constipated.

I'm glad to know this, so thank you very much, Flossy. I've found the same thing, and my body simply cannot tolerate them. I get some kind of reaction that causes my lymph nodes to swell, dizziness, and, following this -- which persists -- I end up barely able to move. My GI keeps saying that the future of treating IBS generally and IBS-C in particular is in probiotics, but twice now, I've used them for two months straight each time, and had to stop because they make me just that sick, and the time it takes to recover once I've stopped them (and will not try them again now that I've heard this from you) is about a month. And, yes, the constipation does get worse. I thought it was just me, as my GI and a group of psych doctors working with GIs in Hamilton keep running studies claiming they've found a miracle treatment in probiotics -- with little evidence published and a very small subject pool, but the claims are making waves in Ontario, Canada. I don't live there, and haven't been a part of studies, but my last appointment with my GI found her writing this down for me: "take Bifido bacterium combined with Lacto bacillus, avoid Align as it did make you ill, make sure you take 10 billion live organisms daily, refridgerate." I obviously haven't: I'm too scared of getting sick again after the other two probiotics.

Lord, I think I've generally just had overall bad luck with doctors.

Please take care, and thank you again for your response. Much appreciation.