has anyone needed a colostomy bag?

[appa]

I have had very bad constipation for a very long time. I was diagnosed with endometriosis in 2020 and they also found a lot of adhesion's around my colon. I am only very recentkly diagnosed with ME/CFS and honestly the two symptoms I have been seeking medical help for since I somewhat recovered from epstein barr have been constipation and insomnia. I have a lot of other symptoms but those two always seemed to be what causes my fatigue and pain and other issues. I was told recently that I am on the last medication available for constipation and my next option would be to have a colostomy bag and they recomended total removal of my colon. I really don't feel ready for that and find the prospect quiet scary. Has anyone else been told this? has anyone else had a colostomy bag? did it help? I know people who have them who still have pain and constipation with them and the doctor who suggested this even said it may not help me any. the medications that do help me go cause me so much pain and make me so miserable. I am hoping the medication he said I can try but that it is the last one he knows of will work.

 

[sam.d]

I suffer from extreme constipation too.
What is this "last medication" you are on?

 

[appa]

I have to pick it up from the pharmacy but it is called Trulance. I have been taking linzess which works but causes me as much pain and discomfort as not taking anything really. I also take motegrity which I am uncertain if it helps in any way but it doesn't seem to cause any harm and helps my anxiety about the constipation.

 

[sam.d]

I use Macrogol, 3 bags a day. Ask your pharmacist for the trade name (macrogol is the generic name).
Without it I would have to go to the hospital within a couple of days because of total impaction.
I've used macrogol, 3 bags a day, without any ill effects for 5 years now. Totally passive. That Trulance looks like an active laxative with an aggressive effect on your colon. I can't tolerate active laxatives either.

My doctor said there are patients with much more extreme constipation than me (I don't even understand how that's possible) that are taking 8+ bags of Macrogol per day and managing their constipation.

So no, removing your colon seems like an insane solution. You should fire your doctor immediately for even recommending this.

 

[appa]

I use Macrogol, 3 bags a day. Ask your pharmacist for the trade name (macrogol is the generic name).
Without it I would have to go to the hospital within a couple of days because of total impaction.
I've used macrogol, 3 bags a day, without any ill effects for 5 years now. Totally passive. That Trulance looks like an active laxative with an aggressive effect on your colon. I can't tolerate active laxatives either.

My doctor said there are patients with much more extreme constipation than me (I don't even understand how that's possible) that are taking 8+ bags of Macrogol per day and managing their constipation.

So no, removing your colon seems like an insane solution. You should fire your doctor immediately for even recommending this.

I looked that up to see it's other names. I don't tolorate it well. it is why they put me on linzess. i had to take so much of it to work at all. i should try it again in case it works better than what I have now. when anything works I go so often as to have incontinence or if something works it takes days with so much cramping for those days that rest is not possible. I was diagnosed with a redundant colon when I had surgery for endometriosis in 2020 and they also found all the adhesion's then and I had surgery in 2021 to repair a very severe prolapsed colon that I had assumed where very mild hemorrhoids for years since it didn't bleed. doctors think there could be nerve damage from the adhesions. the constipation is what lead to the endometriosis diagnosis. it really has lead to all my diagnosis since it seems so intertwined.

 

[sam.d]

That's unfortunate to hear.
But you should definitely be able to tolerate Macrogol. It's a completely inert substance that just retains water in your colon by osmosis without touching the walls of your colon (which all other laxatives do). Just make sure to take enough bags (could be 8+ daily) and allow some time for it to work (up to 3, even 4 days).
Make sure you purchase Macrogol with zero additives, lots of variants have all sorts of sugars added to make it palatable. I also cannot tolerate any of these variants. I only take the one which tastes absolutely super dull/awful. The only ingredients should be Macrogol 3350 + Sodium Chloride + Sodium Hydrogen Carbonate +
Potassium Chloride, nothing else.

 

[appa]

yes I know what it is and how it works and I did try it repeatedly for a year after my surgery for rectal prolapse where my colon was going outside my rectum. I have talked to others who also do not tolorate it. I have talked to doctors who have had patients who don't tolerate it. I still sometimes use it with the linzess when the linzess isn't working. sometimes doing a colon prep like you do for a colonoscopy doesn't work for me and i am forced to do anal irrigation as my only means to go. this is why doctors are talking about a colostomy bag for me which is very scary.

 

[appa]

a big part of the problem is if i rest and do not move much the constipation gets much worse but I can't do much but rest. i force myself to get up and move so I can go but then I get PEM

 

[sam.d]

I'm sorry to hear this and wasn't aware of the fact that there's so many that don't tolerate it.
I hope there's others on this forum who can speak on these severe structural issues you have. This is clearly beyond my knowledge.

 

[lenora]

I wonder if this has been tried. I had GI surgery a few years ago and yes, any adhesions will cause problems. I can only imagine what endometriosis could do insofar as damage goes.

A friend who has really bad GI problems told me about Miralax a few years ago and it changed my life. It's easy to use, you can adjust doses to your own needs, has no flavor whatsoever and I don't take any prescribed meds now. Some people take it in the evening if needed, but I don't know how bad your situations are. This is something that is OTC and it's strictly something that may or may not work. It's not going to help with pain....but it's worth trying for a few days.

I also don't eat anything after about 5:00 p.m. That helps, as a does a heating pad (but I'm sure you've tried many of these things). I don't mean to insult your intelligence, it's just worth a try before a colostomy...especially one that may/may not work.

You may be so far beyond this that you're irritated with me for even suggesting it. I'm not saying it's perfect, but may help you avoid something more drastic. It's not addictive. Good luck, both of you. Yours, Lenora

 

[Judee]

Are you able to do Citroma once in a while? It helped my Mom on occasion.

Also Mycopryl is a palm oil caprylic acid supplement that seems to help with this issue. It also kills Candida. I only need one once in a while but the bottle dose is 6 capsules per day.

Have you ever tried anything like that?

(Caution: I do have to sit up for a while after I take it though or it can back up into the esophagus and cause irritation.)

Edit: I just noticed now that you said colonoscopy prep things don't work for you. Sorry. That probably means the Citroma wouldn't either.

 

[Judee]

Also, I found this old post on Lassessen's website cfsremission. Perhaps something mentioned here would be helpful. I hope.

https://cfsremission.com/2016/04/30/constipation-in-ibscfsfm/

 

[Judee]

Have you tried mineral oil at all? https://www.amazon.com/Swan-Mineral-Oil-16-oz/dp/B001B2RG1C/ref=sr_1_8?keywords=mineral+oil&qid=1656698248&sr=8-8&th=1

I also wonder how you do on antibiotics. My Mom always started going well when her doctor put her on doxycycline for a sinus infection. This may be a bad suggestion because I think for some antibiotics make the problem worse but just an idea.

Edit: and one more...canned spinach. Again, some have oxalate issues and this is very high in oxalates but sometimes it helped her.

 

[appa]

Have you tried mineral oil at all? https://www.amazon.com/Swan-Mineral-Oil-16-oz/dp/B001B2RG1C/ref=sr_1_8?keywords=mineral+oil&qid=1656698248&sr=8-8&th=1

I also wonder how you do on antibiotics. My Mom always started going well when her doctor put her on doxycycline for a sinus infection. This may be a bad suggestion because I think for some antibiotics make the problem worse but just an idea.

Edit: and one more...canned spinach. Again, some have oxalate issues and this is very high in oxalates but sometimes it helped her.

I was diagnosed with methane type SIBO last winter I think and did a course of antibiotics. i didn't notice it help and doctors have not seemed interested in prescribing more antibiotics for me. today and yesterday the constipation has not been a problem which is either related to hormones and possibly supplements I take for the SIBO are working or it is the NAD+ I started or the LDN the doctor who diagnosed me with me/cfs prescribed is starting to do something. I actually slept last night for maybe 8 hours too which pain usually prevents. my biggest issues with health have been constipation and insomnia and the more i read here the more I agree with the doctors who diagnosed me with fibromalgia and me/cfs but it is also weird to digest when my biggest issues have been these ones.

 

[appa]

also yes I have tried mineral oil. some of the things people suggest do technically work just the amount of pain I am in and the degree to which they prevent me from doing anything all day but sit on toilet and get exhausted from that become so bad that I start to wonder if I should get the colostomy bag but then I have friends with them who suggested i join a group for people who have them and I see all these people with constipation and cramping and pain I get but with a colostomy bag which the impact that would have on my mental health is worrying. hopefully things are starting to change.

 

[Judee]

today and yesterday the constipation has not been a problem which is either related to hormones and possibly supplements I take for the SIBO are working or it is the NAD+ I started or the LDN the doctor who diagnosed me with me/cfs prescribed is starting to do something. I actually slept last night for maybe 8 hours too which pain usually prevents.

Hurray!!!!

Edit: Don't add anything right now then because it will be nice to see if the improvements keep happening for you. I hope. Saying a prayer.

 

[Zebra]

I was told recently that I am on the last medication available for constipation and my next option would be to have a colostomy bag and they recomended total removal of my colon. I really don't feel ready for that and find the prospect quiet scary.

Hi, @appa

First, I'm REALLY sorry this is happening to you. It sucks that something most folks take for granted (being able to eliminate solid waste) is such a painful and exhausting aspect of your daily life.

I suffer from GI dysmotility that primarily affects the esophagus, stomach, and small bowel, but over the years has evolved into constipation as well. I also have a prescription for Lizness.

I experienced my first fecal impaction in 2020, and boy was that a MISERABLE experience. I consulted with my neuro-gastroenterologist afterward, and she ordered a test called an Anal Manometry. Unfortunately, because COVID was surging at the time, I did not get it done (which I regret). Have you ever had one done? Would it possibly shed more light on your situation? Or have you already had "all the tests"?

Also, I wanted to share some news about a new treatment for severe constipation on the horizon. It's a vibrating pill!!!

Check out this link: https://www.fiercebiotech.com/medte...tion-heads-fda-after-completing-phase-3-study

Lastly, it's never a bad idea to obtain a second opinion. Have you consulted a second GI doctor to see if he/she would advise a colostomy at this time, or perhaps they might have a few more treatment options up their sleeve?

I wish you all the best, and I hope you will keep us posted, wether it be in the near future or a year from now.

Warmly,
Z

 

[appa]

Hi, @appa

First, I'm REALLY sorry this is happening to you. It sucks that something most folks take for granted (being able to eliminate solid waste) is such a painful and exhausting aspect of your daily life.

I suffer from GI dysmotility that primarily affects the esophagus, stomach, and small bowel, but over the years has evolved into constipation as well. I also have a prescription for Lizness.

I experienced my first fecal impaction in 2020, and boy was that a MISERABLE experience. I consulted with my neuro-gastroenterologist afterward, and she ordered a test called an Anal Manometry. Unfortunately, because COVID was surging at the time, I did not get it done (which I regret). Have you ever had one done? Would it possibly shed more light on your situation? Or have you already had "all the tests"?

Also, I wanted to share some news about a new treatment for severe constipation on the horizon. It's a vibrating pill!!!

Check out this link: https://www.fiercebiotech.com/medte...tion-heads-fda-after-completing-phase-3-study

Lastly, it's never a bad idea to obtain a second opinion. Have you consulted a second GI doctor to see if he/she would advise a colostomy at this time, or perhaps they might have a few more treatment options up their sleeve?

I wish you all the best, and I hope you will keep us posted, wether it be in the near future or a year from now.

Warmly,
Z

Hi
Yes I believe the test you ask about the Anal Manometry is one of the tests I have had. I had that one last fall. That is very good news about that pill. a vibrating pill sounds like something that could very much help me. anal irrigation works when laxetives do not work though I find it extremely unpleasant it is something that works enough for me to keep my colon while waiting to find other options. i am hoping that the past few days being a little better continues though I tend to have a few good days every month. the colostomy was the suggested of one of the 3 GI doctors I went to in the past year. I plan to talk to the other ones about it before i go through with that type of surgery though as I am very anxious about that. If I rest as much as the mecfs doctors advice the constipation gets so much worse but if I move as much as it takes to get things moving the rest of my health issues get worse.

 

[Judee]

but if I move as much as it takes to get things moving the rest of my health issues get worse.

I was talking to one of the other members about peristalsis awhile back after I tried a TENS unit for my IBS. Even though I have the IBS mostly in remission by avoiding my trigger foods I still get pain at the four corners of my large intestines so I got the idea to try the TENS unit for that.

I don't remember...I think it did help some with the pain but what I also remember is that at least 2 out of the 3x I tried it, I started to hear very loud active bowel sounds starting so I think it also does stimulate peristalsis.

The attached pic shows roughly where I placed the pads. (Maybe you would need to place them differently though.)

Some of the TENS units also work as EMS (Electrical Muscle Stimulation) units. I don't think mine has that feature.

Anyway, just another odd idea but maybe it would be a way to simulate your moving without you actually having to get up to do so, if that makes sense. (I mean I have heard of therapists using EMS to help keep the muscles of paraplegics from going into atrophy so maybe ???)

And of course, I don't think you mentioned peristalsis being an issue for you so this might not be that helpful.

Also this might be something you would want to run past your gastro doctor as well to make sure it would be okay to try before you do.

 

[YippeeKi YOW !!]

I was told recently that I am on the last medication available for constipation and my next option would be to have a colostomy bag and they recomended total removal of my colon

Good grief !!! They're out of their tiny, little reductive medical minds. You're too young, no matter how bad your constipation is, to take an extreme, life altering, irreversible measure like removing your entire colon.

My doctor said there are patients with much more extreme constipation than me (I don't even understand how that's possible) that are taking 8+ bags of Macrogol per day and managing their constipation.

So no, removing your colon seems like an insane solution. You should fire your doctor immediately for even recommending this.

I totally, completely, angrily agreee !!! Your Dr is a perfect example of why the US medical community is held in what borders on contempt.

Well, for some. For me, it whizzed past contempt and settled on fear and loathing ...

a colostomy bag which the impact that would have on my mental health is worrying.

It's absolutely terrifying, and I cant blame you for being frightened by the prospect.

I think that firing your Dr is way too gentle. Shooting comes to mind, with apologies to any sensitivities that statement might rile ....

Lastly, it's never a bad idea to obtain a second opinion.

In this case, a second opinion is absolutely REQUIRED, and by a Dr not in the same practice or even network, or if you can manage it, town, as the medical clown car that you're dealing with.


ON ANOTHER SUBJECT ENTIRELY ....
Early on in my ME, ad long before I knew what I was dealing with, I was struggling with horrendous cnstipation, and I have some impressive frames of reference for 'horrendous'. In fact that's where my journey here to PR started, with investigating all treatments for IBS-C and finding nothing that helped. It took a long time to find a solution that worked for me.

I don't know if you're open to trying yet one more thing, but the one that worked for me was MAGNESIUM OXIDE.... I'd been taking a strong herbal laxative for several years on Dr's orders until it finally started not to work, which was frightening, and produced impaction after impaction, along with some not inconsiderable colon damage. I'll spare you the tales of how I dealt with that, because ..... eeewwwwww.

The mag oxide works as naturally as possible, and without any of the many chemicals that are included in all laxataive preps from MiraLax to every other one I tried, right on to the damaging prescription treatments.

Mag Oxide is magnesium bound to oxygen. It's a small molecule, so it races thru your system like a bat outta hell and goes straight to your colon, where it draws in large amounts of stool-softening water. The volume of water and the impacted stuff you need to move out of your system forms enough bulk to get your colon moving, and yes, you might spend some time (understatement alert) in the bathroom, but far from damaging your colon further, it helps it heal.

I had to experiment with dosages until, 1) I unimpacted my colon, and .... 2) Figured out the optimal dosage for regularity without cramping, gripping or diarrhea, which the mag oxide produces very little of. Well, execept for the diarrhea part if you take too much.

It was a God-send, and it took a minute, but it resolved the problem for me. It still pops up frm time to time for all the reasons that you mentioned, like not being able to jog around the block to keep things moving, but I up my dose slghtly, and wait for the healing to start.

I also added 2 Citrucel tablets twice a day, since my diet is, shall we say, sub-optimal and could use more bulk. There are days when eating anything is difficult.

This has gotten ay too long. Sorry. Foggy today, so editing is hard for me.

Lemme know if you want the recipe for the warm and not untasty beverage I used to ingest the mag oxide yes?