has anyone needed a colostomy bag?

[Wayne]

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.

Hi @appa -- I've had most of your symptoms, and have found a solution that works very well for me. Namely, I do daily coffee enemas (CEs). Some may call it "extreme", but to me, it's a whole lot better than having my colon removed! I've been doing CEs for many years, and can hardly imagine what my daily life would be like if I didn't.

They allow me to often go from a just about out of my mind state of misery, to a state of deep calm and sense of well being, usually within an hour or so. I've experimented with them over the years, and my latest discovery I find very helpful is to add a teaspoon of wheatgrass juice powder to the coffee solution. I also do a variety of lymphatic massage and energy balancing techniques while I do them.

Regarding the lesions you mentioned, I believe wheatgrass juice enemas, and/or implants, could be very helpful. Also, any number of herbs would also likely be very helpful.

Once I learned how to do CEs, I streamlined the process to make doing them very simple. I cringe when I see online descriptions and YouTube videos about how to do them on the bathroom floor, or in the bathtub, etc., and how it can take forever to set up and do them. I do them in the comfort of my bed, and takes less than 10 minutes before I start doing a variety of energy balancing techniques, making it all a very calming and healing experience.

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.

Thanks @YippeeKi YOW !! for your descriptive response. I was going to post something far more "strenuous" (?), but yours will suffice for the sense of outrage I felt. . . Perhaps part of my response is my older sister was given this advice about 40 years ago, and she now believes it was one of the worst decisions of her life.

I can hardly believe doctors do these kinds of radical surgeries without ever trying very safe and often extremely helpful alternative therapies. But hey, even if it ruins a person's life, at least they'll get paid handsomely for their handiwork regardless. AAaaarggghhh!!!

 

[appa]

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.

yes I have a very nice tens unit and have tried but maybe i didn't have the right points. i will try this.

 

[appa]

@Wayne I have thought about trying coffee enema. i have done matcha just because it is much easier. i worry about the caffiene since I am so sensetive but i will probably resort to trying the coffee enema as i am desperate. i just hate enemas in general and have to resort to them some already.

 

[appa]

@YippeeKi YOW !! I have tried the various supplements and things you recomend. the otc stool softner with sennakot worked again this morning so maybe i have found a solution. my constipation issues started before i had epstien barr in my late teens. i suspect it started from the endometriosis and i don't know if that caused the adhesions or not. i was exposed to chemicals in food when very young that could have caused a lot of intestinal inflammation so i wonder about it. the reason they suggested this serious of a surgery is they believe i have nerve damage causing the problems and that there maybe little that can be done currently. but i am going to keep trying stuff. i both have suspected i have mecfs for many years and been terafied of the diagnosis but what surprised me was to end up with this diagnosis when i have been seeking help for the constipation and numb feet not the lethargy i keep experiencing. i think it took longer to get the mecfs diagnosis because doctors usually ask what your biggest problem is and i have always said constipation and insomnia.

 

[Zebra]

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.

Yes! I can totally relate to this predicament!

My dysmotility came on swiftly, and my doctor at the time frequently reminded me that regular movement, such as walking, would stimulate peristalsis along the entire GI tract.

I was able to walk after "dinner" (aka soup) the first few months of my illness, but my ME/CFS has progressed to the point where even very short walks are few and far between.

I hope @Judee's suggestion of revisiting the TENS unit will be useful to you! I hope there's a nurse practitioner or other medical provider that can work with you to find the best application sites for you.

 

[Judee]

and things you recomend. the otc stool softner with sennakot worked again this morning so maybe i have found a solution.

I didn't realize that you hadn't tried senna before otherwise I might have suggested another thing called 10 herb: https://www.amazon.com/Esi-Ten-Herbs-strong-Ovalette/dp/B011R31H7I/ref=sr_1_3?crid=2XJL4YXAEAP1M&keywords=10+herb&qid=1656789945&sprefix=10+herb,aps,498&sr=8-3

It's a remedy they use in Italy hence the listing in that language but that is the Amazon US site. (Yikes, though it must be shipping from overseas though because of the long ship times. Sorry. I checked eBay too.)

Anyway, here is the label in English in case you wanted to know what the ingredients and instructions are:

I think a lot of those ingredients are also considered to be "bitters" I believe. In case you wanted to research that.

Edit: But again stick with what is working for you for now just to be safe.

Arrgh...I forgot that I couldn't figure out how to make that picture enlargeable...sorry.

 

[YippeeKi YOW !!]

I have tried the various supplements and things you recomend.

The only things I recommended were the mag oxide, and, since it's helped me, as an afterthought the Citrucel. So not particularly various.

he reason they suggested this serious of a surgery is they believe i have nerve damage causing the problems and that there maybe little that can be done currently.

One of the reasons I recommended the warm magnesium oxide 'tea' was because it not only addresses the impactions, it also gradually heals your colon, and magnesium is specific to nerves and nerve damage.

If you have adhesions from endometriosis, I assume they run more or less laterally from your uterus to your colon? Other than keeping your large intestine in good working order so as to side-step the adhesions issue, there's not much that can be done about them.

When you tried the mag oxide, did you use it in liquid form, or in capsules, or tablets? I found the means of delivery made a huge difference.

the otc stool softner with sennakot worked again this morning so maybe i have found a solution.

I'm assuming the stool softener was either Colace or a generic version of it. Be careful with it. It was implicated in the development of colon cancer in various research studies several years back.

And Senokot is a highly processed and modified version of senna leaf, which in it's natural state is one of the stronger and often more colon damaging laxative herbs. Both Colace (and its generic mimic) and Senokot are intended for short-term use, usually pre- or post op or post chemo.

Glad you're doing better !!! Hang in ....

 

[appa]

@YippeeKi YOW !! oh sorry. i am having a lot of brain fog. i have taken magnesium oxide but not as warm tea. i usually drink a lot of warm water when i take anything. the laxetives i am taking now where recomended by my doctors and they are not worried about me taking them long term. how much sennokot i need changes throughout my hormonal cycle same with anything i take. i will try warm magnesium oxide though.

@Judee i do take senna which was first recomended by a nurse friend but when i spoke to doctors about it they feel it is good and it is on my list of medications i take with my doctors now. i will look into that tea. i have tried a lot of herbal teas.

 

[YippeeKi YOW !!]

the laxetives i am taking now where recomended by my doctors and they are not worried about me taking them long term.

Uhhhhhh .... hopefully not the same Drs that want to yank out your entire colon.

Generally, Drs wouldnt worry about a patient taking OTC rat poison long term, so long as their name(s) werent anywhere on a prescription pad recommending it.

They now even less about herbs and herbal concoction than they do about butrition, and that's going a long way, since they get more instruction in med school in billing practices than in basic nutrition. It's the reason so many patients are moving over to naturopathic Drs, who unfortunately have become more and more like the Drs that they used to brag that they were the opposite of.

i will try warm magnesium oxide though.

Probably best to stick with what works for you and what you're comfortable with. Jus put it on the back burner for possible future reference ....

Should you decide you do want to try the mag oxide, I use Bulk Supplements mag oxide powder. I started with 1/8th of a tspn in about 4-5 ozs of very warm water with a little stevia in it for flavor, and adjusted up from there. I started getting results at a little over 1/4 of a teaspoon as well as I recall, sometimes 3/8ths of a tspn.

We're all different, just experiment a bit til you hit the sweet spot. I take it just before bed and let it work overnight. Rarely fails ....

I know how frustrating, frightening, and painfully uncomfortable what you're going thru is, wishing you peace and relief ....

 

[Jessie 107]

@YippeeKi YOW !!
I also suffer with impaction 😒 I have been trying to find Magnesium oxide in powder but can only find it in capsules/tablets,I am in the UK. Would it still work in tablet form?
Not sure how many to take.

 

[Rvanson]

Thankfully, my appendix is gone. You talk about some real pain, as it burst. Came close to dying. I was in the hospital for two weeks, having Penicillin shot in my butt 6 times a day, after the surgeons, removed it, and sutured it up. Most people don't know it, but the Apollo astronauts had to have their appendices removed. I was 10 years old.

 

[YippeeKi YOW !!]

I also suffer with impaction 😒 I have been trying to find Magnesium oxide in powder but can only find it in capsules/tablets,I am in the UK. Would it still work in tablet form?

I dont think tablets are as good as powder. As far as I know Bulk Supplements delivers to UK thru Amazon, which carries a pretty full list of all Bulk's many, many powders.

Give Amazon a quick search. I find that using Google, or whatever search machine you prefer to find them is much better than using the Amazon search feature, whcih seems to burp out anything it feels like. Th Bulk Supplements form of mag oxide is pretty cheap, and very effective.

Not sure how many to take.

I couldnt begin to guess, since I hvae no idea what the strength of your tablets might be. And again, the tablet form wasn't particulalry effective, partly because it doesnt allow for the fine-tuning of your dosage, which the powder form does, and because tablets have a host of additives, many of them bad news health-wise, and van take a lot longer to dissolve in you system.

The capsule form would be better, but you'd have to do some arithmetic to figure out your dosage on those. But at least you can open them and dump them into a cup with some warm water ....

Good luck, and dont give up !!!

 

[appa]

@YippeeKi YOW !!
i just tend to trust advice from doctors over advice from people online that i don't know.

i am still struggeling same. my guess is this is caused by the adhesions and i don't know if i mentioned redundant colon. but i think the me/cfs is making it much worse since it prevents movement which is the thing that helped the very most. i have friends with EDS who often seem sure I also have EDS though i don't have any hypermobility and have been unable to get tested for it so far. but some of my friends with EDS have told me that did have to get their colon removed and they wish they had sooner so i just don't know. when a doctor suggested this i felt like a doctor finally understood how serious the impact on my life the constipation is having and how futile medications have been. i can do colonic irrigation to go but it is so unpleasant and takes to much energy and strength. it is part of how i stay out of the emergency room though. i can take enough magnesium to go but the dosage i am taking is so huge i worry about my kidneys and it causes electrolyte issues. i have to take like colon prep amounts and that causes horrible cramping lasting sometimes more than 12 hours before i start going and then i am going every 15 minutes for hours and it takes all my energy just to manage to poop at all. everytime i tell people who are not doctors they tell me everything that works for them and i just feel really down about all of this. i am to tired for this.

 

[YippeeKi YOW !!]

i just tend to trust advice from doctors over advice from people online that i don't know.

Then I'm assuming that you've had better luck with doctors than most of us have, tho I agree with you about the caution needed to sift thru advice from unknown people on internet sites. Or even from well-meaning people, friends, and family that you actually know.

What you're going thru is horrendous. I cant find words to describe my sense of how truly awful it is.

I was diagnosed with endometriosis in 2020 and they also found a lot of adhesion's around my colon.

Did the Drs have any opinion about what caused the adhesions? I've been trying to put together a mental schematic of what led to which, and when it all started, because I'm so alarmed at your doctor's suggestion that you have your entire colon removed, with a lifetime ahead of you to have to live with that irreversible decision....

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.

What led to the surgery for endometriosis? By that I mean what preliminary testing did they do to establish the endometriosis, like a laparoscopy, MRI, or CT scan?

So far you've suffered from a redundant colon, diagnosed in 2020 when you had the surgery for endometriosis, which is also when they found the adhesions (from somewhere near the colon to the colon, or within the colon itself?), then a surgery in 2021 to repair a severely prolapsed colon (not unusual with redundancy), which produced the doctor's opinion that there could have nerve damage from the adhesions.

Were they able to establish that you had nerve damage, or is that still just an opinion?

All of this to more or less to prove that you have severe, crippling, constipation, with the only offer of relief being the complete removal of your entire colon.

I know you've heard a lot of opinions from a lot of doctors and a lot of random internet people, and one more is just another frightening reminder of how alone you are in all this, but I think you need to find another doctor, one who's familiar with all those conditions, especially redundant colons and their effects, which are rare and not thoroughly understood in terms of ramifications and inherent difficulties, and try to get something other than a drastic, irreversible surgical removal of a major organ.

Has anyone suggested a colon resection, where a portion of your overly-long colon can be removed to reduce the length of the colon to something more normal? This would also reduce the length of time food has to travel before evacuation, and therefore possibly correct at least one of the causes of your severe constipation, which might allow other less drastic measures, like relatively mild laxative medications, osmotics, etc, to actually do some good and retur you to a more livable life?

I wish I had something more to bring to this, but it's apparent that you've tried everything from the obvious to the more specialized and particular, so I have nothing new to offer. Except my useless empathy. You've been thru hell.

 

[Judee]

I wonder if you are low on acetylcholine. I was looking on this site for how antihistamines/alzheimers and then went and read the reviews for her product Parasym Plus on Amazon. Lots of reviews mentioned it helping with being able to have a bowel movement.

She talks about it in #3 here:
https://vagusnervesupport.com/top-ten-symptoms-low-acetylcholine/

Not recommending her product necessarily especially since it's pretty expensive but just the idea about low acetylcholine.

 

[Tammy]

I've had a history of constipation and the one thing that helped me the most was celery juice in the a.m on an empty stomach. I don't particularly like the stuff but man oh man does it clean me out. You only want to drink the juice and not the fiber, so if you have a blender you can blend and then drain either through a seive or some other draining product. I had to start out low drinking approx. 4 oz till I worked myself up to a full glass. I would drink it daily for some time but it's only occasional now. It's best in the a.m on an empty stomach but you can also drink at other times................but try to wait at least 2-3 hrs after a meal.

In the old days, they referred to it as natures toothbrush for the colon.

 

[Zebra]

Hi, @appa

On a different thread, I saw that you have access to Stanford Health Care.

Do you get your GI health care from the Stanford Digestive Health Clinic?

I am asking, because I want to recommend Dr Linda Nguyen, a neuro-gastroenterologist. Her treatment area is exclusively GI motility disorders.

I'm wondering if she would be a good second or third opinion for you regarding the need for colon surgery and a colostomy?

Wishing you all the best!

 

[appa]

Hi, @appa

On a different thread, I saw that you have access to Stanford Health Care.

Do you get your GI health care from the Stanford Digestive Health Clinic?

I am asking, because I want to recommend Dr Linda Nguyen, a neuro-gastroenterologist. Her treatment area is exclusively GI motility disorders.

I'm wondering if she would be a good second or third opinion for you regarding the need for colon surgery and a colostomy?

Wishing you all the best!

Hi. I was refered to a GI at standford who i had some very uncomfortable appointments with but that was last year. the doctor that suggested colon removal is at ucsf. i wonder if i can get to see Dr Linda Nguyen. I am really desperate. it is the pain that is the problem that i tend to think is caused by constipation since when i go then i hurt less. i dunno. i am having a hard day. i talk to the chronic fatigue np at standford tomorrow so maybe i will mention to her that the biggest problem right now has to do with constipation and that i don't know how to rest physically when i also have to go to the bathroom and that is exhausting.

 

[YippeeKi YOW !!]

Hi @appa .... please read my longish post to you, above. It doesnt have any recs for various forms of oral supps or juices or enemas. It does contain some thoughts that might be helpful ....

EDIT ... typo. Or two.

 

[wabi-sabi]

What a miserable situation! So sorry to hear this for you. I think these tummy problems can come from our autonomic nervous system problems in ME/CFS.

You might reach out to Dysautonomia International, since I have heard doctors talk about these sorts of problems at their conferences. http://www.dysautonomiainternational.org/

Another idea, since you mentioned going to Stanford- Have you talked to the Intestinal Failure group there? Seems like they deal with what you are going through. https://stanfordhealthcare.org/medi...nterology-and-motility-disorders-program.html