has anyone needed a colostomy bag?

[Zebra]

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.

Hi, @appa

You may be able to ask the Nurse Practitioner for a referral to Dr Linda Nguyen, specifically.

Dr Nguyen is one of the few physicians that I actually trust. She is incredibly smart, and hasn't lost her compassion for those that suffer from GI dysmotility.

She is ALWAYS up-to-date on the latest research, what solutions or treatments are on the horizon, and when she realized I was medication hesitant, she recommended herbal supplements to try first. Because her specialty (neuro gastroenterology) is still fairly niche, be prepared for a long wait for a first-time appointment, but it's worth it.

Dr Nguyen *might* be just the right person to look at your medical history and test results with fresh eyes and perhaps a different approach to your problem. That's what she did for me!

When I showed up in her office, I had an existing MISdiagnosis of "scleroderma esophagus," a feeding tube, and constipation. Her testing, interventions, suggestions, and guidance have greatly improved my quality of life. As I mentioned in another post, my constipation is no where near as complex, painful, or life-disrupting as yours, but Dr Nguyen has seen it all!

https://med.stanford.edu/profiles/linda-nguyen

https://mobile.twitter.com/LindaNguyenMD?ref_src=twsrc^google|twcamp^serp|twgr^author

 

[Booble]

I haven't read the other responses yet but wanted to say that I had severe endometriosis as well... though I didn't know it until they cut me open. After surgery they told me the endometrial adhesions were everywhere including the bowel. I had two wonderful female surgeons and they were able to scrape off as much as they could. From a poop perspective, I go about once a week or 10 days. Sometimes a couple days in a row. It doesn't seem to be bad except for when I eat something that wants to get out ASAP and I have to get through all the week worth of poops to get to the diarrhea part. That gives me bad cramps and a lot of time at the toilet. Overall though, it's not too bad and I have been pooing this infrequently for decades. Honestly I feel worse when my colon is empty. I'm not sure why but I often get sick and brain fog for a couple hours after pooping.

I would get a second opinion on the colostomy bag option. That sounds like a last resort thing to me.

 

[YippeeKi YOW !!]

I haven't read the other responses yet but wanted to say that I had severe endometriosis as well... though I didn't know it until they cut me open.

I think @appa is dealing with something a lot more difficult, tho getting rid of the endometrial growths would help. Appa has a redundant colon, which would need to be addressed for any real relief, along with as much of the endometriosis as possilbe ...

But removing the whole colon is just insane. A colon resection would not only be enough, but would, in all likelihood, resolve a lot of the problems ....

 

[appa]

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.

I have had a lot of trauma from unintentional medical gaslighting but I have also become sicker when taking advice from alternative type medical people and friends and well meaning strangers so I have learned to be very careful about what I do for my body and it's health. I basically have c-ptsd from medical care though. I have c-ptsd from how i was raised also but I seem to have healed as much as I can from my childhood stuff

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....

no one has told me what caused the adhesions but I suspected I had them from so many friends over the years saying it sounded like I had them. I had them where the small and intestine meats the large intestin or colon surrounding my apendix though my apendix was very healthy and i kept it. my own hypothesis which my nutritional counsler agrees could have caused this is that my older brother used to make me eat things like shampoo when I was very young. I am a survivor of childhood sexual abuse and other forms of abuse and the trauma from that probably damaged my body quiet a bit.

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?

i searched for what could cause my symptoms online and came to endometriosis. i was trying to find what could have caused the adhesions and that seemed like the most likely cause to me at the time unless it was childhood trauma but none of the people i know int he survivor community have had some of the health issues I was having. my endometriosis like most was not visible on imaging tests so the surgery was the laproscopy to diagnose and i went to a surgeon who removes all that he can find at the same time so you don't need a second surgery after diagnosis. he also does a lot of tests on the body he considers inhumane to do on someone who is awake. so he was able to check me for all sorts of other problems. he told me i had a redundant colon after the surgery and then i realized what i had thought where mild hemroids was actually my colon coming outside my body.

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.

it was actually a gi doctor at UCSF more recently that suggested nerve damage from the adhesions. i told him i need to understand what is going on and have words to explain my body and why it is malfunctioning and then he told me he suspected nerve damage from adhesions.

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

no and i would like to have tests for this however i need to recover for quiet a long time eveerytime i go for testing so I can't do to much at a time.

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 am afraid of colon removal cuz the doctor rold me i may still have the same pain as i do now and people with bags are so prone to hernias and still get constipated with only a small intestine. so i am hoping i can find an alternative. i am really afraid.

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.

I agree. i need to find a gi doctor who understands the other stuff. i have an appointment today with someone from standford chronic fatigue thing so I maybe will ask her some about this. I am autistic and I do have severe c-ptsd (actually also have DID from the child abuse) and it makes me get afraid to tell doctors things and ask for things. i get really anxious with doctors.

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?

in the redundant colon groups i am in it seems that most people are told that this is not an option but there are surgeons who will do it. i really want this. i suspect this would be my best and safest option.

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.

thank you lots.

 

[appa]

@Judee thank you. i have not tried that and will look into it.
@Tammy i need to see if i can get my husband to make it fresh for me. when i am bedridden i can sort of force any food cuz i get so i just don't care about taste. i have tried cellery juice but it wasn't fresh and so maybe that was why it didn't work. i could buy a bunch from local place and try the premade stuff again. i just don't have the energy to use my juicer these days. honestly what little energy i have has to be spent doing things that make me happy or my mental health gets to bad. so i sit in the garden and try and plant something every week. maybe i can put the juicer outside in the garden.
@wabi-sabi i really like your user name and thank you for the links. i will look into that. i think a colon resection sounds much better than colon removal. they may have suggested that because of how emotional i was at that appointment.

 

[Booble]

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.

I think that you need to isolate if the pain is actually from the constipation, something else with the colon, from endometriosis, or from another organ or something else completely.
You said you tend to think the pain is from the constipation but that needs to be determined. Otherwise you might go in the wrong direction.

When did the pain start to get bad/worse and when did they last go inside you?
Unfortunately ultrasounds and CT scans don't show certain things, such as endometriosis.
(In my case, they thought I had ovarian cancer. It was endometriosis.)

Stanford and UCSF have some of the best doctors in the world so continue to work with them and get 2nd and 3rd opinions so that there is some consensus by these experts on the best course of action.

 

[Booble]

Did the doctor's actually tell you that your hemorrhoids are your colon?
Going to give some tough love and suggest that a lot of guessing is going on here.
Eating shampoo doesn't cause endometriosis.
My advice is to take a break from seeking answers from people online (including me!) and continue with the medical professionals.
Ask them lots of questions. If possible bring a friend who can listen, take notes and ask further questions.
Dig deep with them. You have some of the finest medical experts in the world at your fingertips and while I know we've all had mixed results with doctors, 9 times out of 10 MDs from Stanford and UCSF are going to know more than random people on the Internet. Everyone's situation is unique. Let the doctors examine you to understand and make them review ALL the options with you.

Good luck!

 

[appa]

Did the doctor's actually tell you that your hemorrhoids are your colon?
Going to give some tough love and suggest that a lot of guessing is going on here.
Eating shampoo doesn't cause endometriosis.
My advice is to take a break from seeking answers from people online (including me!) and continue with the medical professionals.
Ask them lots of questions. If possible bring a friend who can listen, take notes and ask further questions.
Dig deep with them. You have some of the finest medical experts in the world at your fingertips and while I know we've all had mixed results with doctors, 9 times out of 10 MDs from Stanford and UCSF are going to know more than random people on the Internet. Everyone's situation is unique. Let the doctors examine you to understand and make them review ALL the options with you.

Good luck!

the surgeon who made it so my colon no longer was coming out my butt didn't say if I have hemroids. many years ago I was told I have hemroids from a sigmoidoscopy but the hemroids honestly never have bothered me. the only thing that was a bother that I thought was hemroids was my colon coming outside. i think I was right since the surgery fixed it and it stays inside now. they did diagnose me using a very special type of mri where they have you basically poop barium while watching it with the mri and that was when they told me i needed the surgery. they also diagnose pelvic prolapse and i think uterine prolapse but i can't remember it all. i was told i had 3 things prolapsed and to only repair the colon if there would be any chance of having a 3rd child which at the time i was hoping very much to have and i still want another child though at my age and with my health i doubt i can get pregnant. my husband and i have actually thought about trying since pregnancy is the only thing that has ever really improved my health.

 

[appa]

I think that you need to isolate if the pain is actually from the constipation, something else with the colon, from endometriosis, or from another organ or something else completely.
You said you tend to think the pain is from the constipation but that needs to be determined. Otherwise you might go in the wrong direction.

When did the pain start to get bad/worse and when did they last go inside you?
Unfortunately ultrasounds and CT scans don't show certain things, such as endometriosis.
(In my case, they thought I had ovarian cancer. It was endometriosis.)

Stanford and UCSF have some of the best doctors in the world so continue to work with them and get 2nd and 3rd opinions so that there is some consensus by these experts on the best course of action.

i had an endoscopy in late december or very early january i can't remember the date. i think the last colonoscopy was last year i am not sure. they found inflamation with the endoscopy and told me no more nsaids and i was on strong acid reducer for a while but i am seeing how i do without it now. if i take nsaids that pain from them comes back very quickly.

 

[appa]

i think i am going to try a few more supplements and things and then next time i am having a bad day where i feel very desperate i will message the gi at ucsf and ask about colon resection for the redundancy. if that would be an option. i do also go to an acupuncturist who is away on vacation aid i get the impression she would think this is a very bad idea. i can also talk to my nutritional counselor about it.

 

[YippeeKi YOW !!]

Regarding your appointent at Stanford today, I'm hoping you remembered this post from @Zebra re Dr. Linda Nguyen, cause she sounds like she might be exacltly what you're looking for.

You may be able to ask the Nurse Practitioner for a referral to Dr Linda Nguyen, specifically.

Dr Nguyen is one of the few physicians that I actually trust. She is incredibly smart, and hasn't lost her compassion for those that suffer from GI dysmotility.

I have had a lot of trauma from unintentional medical gaslighting

I've never found ANY medical gaslighting to be UNintentional. Quite the opposite. Medical practitioners, from naturopahts to MDs to some nurses, use it as a tool to control and subdue a patient who's actually insisting, however carefully, on getting realistic treatment for their illness.

I have also become sicker when taking advice from alternative type medical people and friends and well meaning strangers so I have learned to be very careful about what I do for my body and it's health.

I hear you, and I totally agree. Much as I love PR, and am deeply grateful to it (I really think that it saved my life), I'm careful about who I listen to, whose advice I trust my already badly mauled, battered, and beaten health to, and am careful about trialing new substances.

People mean well, and they want to help, but they're not always right. And as we've all learned here, what works for one doesn't necessarly work for others. So one persons miraculous 'cure' could be someone else's 2 week-to-recover nightmare ....

There is no excuse, however, for Drs, who undergo long and presumably thorough training both classroom and hands on during their internship and residencies, and they really should know better. Or care more. Or care at all.

I have c-ptsd from how i was raised also but I seem to have healed as much as I can from my childhood stuff

I had a nastily dysfunctional childhood as well. I'm not sure I've healed myself, but I've managed to survive it, with heart and soul still intact, as you seem to have as well.

There's nothing we can do to change the past or the people in it who so savagely hurt and damaged us. We can confront that damage as best we can, and move on to better things, always knowing that it may pop up again from time to time, and we'll deal with it when it does.

no one has told me what caused the adhesions but I suspected I had them from so many friends over the years saying it sounded like I had them

I dont think that's a reliable diagnostic .

my apendix was very healthy and i kept it

Excellent !!!! AFter dismissing the appendix as a useless vestigial organ and yanking them out like a infestation of ragweed, it was finally discovered a few years ago that the purpose, or one of the purpses, of the appendix is as a place for your friendly gut biome to hide safely from attacks by pathogens and ABXs.

I cant remember the other ones but the appendix turns out to be a really important little organ.

my own hypothesis which my nutritional counsler agrees could have caused this i

My faith in nutritional 'counselors' is, uhhhh, weak. A Licensed Nutritionalist is the only one, among an army of others, who's undergone rigorous training and testing before being licensed, The others .... nope.

i went to a surgeon who removes all that he can find at the same time so you don't need a second surgery after diagnosis. he also does a lot of tests on the body he considers inhumane to do on someone who is awake. so he was able to check me for all sorts of other problems. he told me i had a redundant colon after the surgery and then i realized what i had thought where mild hemroids was actually my colon coming outside my body.

He sounds like a decent human being and an even more decent Dr. That kind of consideration is largely absent in sooooo many others ....

i told him i need to understand what is going on and have words to explain my body and why it is malfunctioning and then he told me he suspected nerve damage from adhesions.

This sounds like a guess, absent any testing or explanation for why he 'suspects' this. He may be right, but as youve already noted, testing is the better counselor.

i am afraid of colon removal cuz the doctor rold me i may still have the same pain as i do now and people with bags are so prone to hernias and still get constipated with only a small intestine. so i am hoping i can find an alternative. i am really afraid.

You hvae reason to be. You're in a very frightening place, and one where it's really hard to find reliable, trustworthy allies.

But that doesn't mean that there arent any ....

i get really anxious with doctors.

Oh God, don't we all, and you have way more reasons for that anxiety.

Hang with us .... we may not have all the medical answers, but we can offer support, understanding, empathy, and a soundig board for ideas.

in the redundant colon groups i am in it seems that most people are told that this is not an option but there are surgeons who will do it. i really want this. i suspect this would be my best and safest option.

I cant express how much I agree with you.

The reason Drs discourage the bowel resection operation is that it's difficult, demanding of real expertise and experience, and may increase their insurance premiums since it's a longish (2 - 4 hrs) surgery ad a delicate one.

But, keeping in mind that I'm absolutely no sort of medical professional, it seems to me that given the agony you have to go thru on a hour-to-hour, daily basis, the colon resection appears to be the best, safest option, with the largest potential for really changing your quality of life .....

The Dr's suggestion to yank out your entire colon is really despicable. It's a much easier operation for them and requires much less expertise, patience, stamina, ad experience than the resection, but the impact on the rest of your life is HUUUUUGE, and largely unpleasant.

thank you lots.

Og, @appa, you're really welcome. We're here for you whenever you need us, and that applis to me as well.

Just know that there are answers, and you'll find the right person to help you find and implement them

At the risk of being tedious, let me repeat @Zebra's warm and effusive recommndation of Dr. Linda Nguyen, at Stanford. Maybe try to get an appointment with her ....

 

[appa]

I think that you need to isolate if the pain is actually from the constipation, something else with the colon, from endometriosis, or from another organ or something else completely.
You said you tend to think the pain is from the constipation but that needs to be determined. Otherwise you might go in the wrong direction.

I agree although I for sure get pain from the constipation. i am uncertain if the back pain is made worse by it or if the constipation gets worse when pain is worse. it is very much all related to my menstrual cycle. i usually have one day where suddenly the laxetives work like normal and i have a lot of diarhea all at once and then feel the best i feel for the month that day. it is also usually the day i have an appetite and actually want food.

Stanford and UCSF have some of the best doctors in the world so continue to work with them and get 2nd and 3rd opinions so that there is some consensus by these experts on the best course of action.

this sounds very important and good.

 

[appa]

I dont think that's a reliable diagnostic .

no diagnosis of adhesions happened when the surgeon had to remobe the adhesions to find my apendix. it was covered in many layers and he couldn't see it to see if it was healthy until he took them all off. but i went to him because so many freinds for so many years told me they thought i had adhesions. so when i looked for an endometriosis specialist and found one also specializing in adhesions i knew i wanted to go to him.

 

[appa]

Excellent !!!! AFter dismissing the appendix as a useless vestigial organ and yanking them out like a infestation of ragweed, it was finally discovered a few years ago that the purpose, or one of the purpses, of the appendix is as a place for your friendly gut biome to hide safely from attacks by pathogens and ABXs.

I cant remember the other ones but the appendix turns out to be a really important little organ.

yes this is why i asked the surgeon to leave it if it was healthy. i sometimes worry i made a mistake but i chose to keep it and am hoping it is helping my gut with the flora and stuff.

 

[YippeeKi YOW !!]

i sometimes worry i made a mistake but i chose to keep it and am hoping it is helping my gut with the flora and stuff.

Based on the little I know about your condition and it's many ramifications, I really don't think you did. I think youd be in even worse shape without it ....

My theory is that I intend to leave with as many of my unaltered spare parts as possible, which I'm sure will disappoint a lot of Drs.... and their accountants ....

 

[appa]

Hi, @appa

You may be able to ask the Nurse Practitioner for a referral to Dr Linda Nguyen, specifically.

Dr Nguyen is one of the few physicians that I actually trust. She is incredibly smart, and hasn't lost her compassion for those that suffer from GI dysmotility.

She is ALWAYS up-to-date on the latest research, what solutions or treatments are on the horizon, and when she realized I was medication hesitant, she recommended herbal supplements to try first. Because her specialty (neuro gastroenterology) is still fairly niche, be prepared for a long wait for a first-time appointment, but it's worth it.

Dr Nguyen *might* be just the right person to look at your medical history and test results with fresh eyes and perhaps a different approach to your problem. That's what she did for me!

When I showed up in her office, I had an existing MISdiagnosis of "scleroderma esophagus," a feeding tube, and constipation. Her testing, interventions, suggestions, and guidance have greatly improved my quality of life. As I mentioned in another post, my constipation is no where near as complex, painful, or life-disrupting as yours, but Dr Nguyen has seen it all!

https://med.stanford.edu/profiles/linda-nguyen

https://mobile.twitter.com/LindaNguyenMD?ref_src=twsrc^google|twcamp^serp|twgr^author

i just tried online to make an appointment with her but she is not showing up when i try. maybe she dosn't have any opening for new patients.

 

[appa]

i called standford and they said Linda Nguyen is not accepting any new patients at all right now. i get so emotional about this and feel so incredibly desperate.

 

[YippeeKi YOW !!]

i called standford and they said Linda Nguyen is not accepting any new patients at all right now. i get so emotional about this and feel so incredibly desperate.

With good reason. Its incredibly frustratin to think you may have found the answer and then to find the road blocked.

Maybe @Zebra can offer some pointers. I believe she mentioned talking to the nurse practitioner while you were there about seeing Dr. Nguyen. It might be possible to access the NP via phone ....

Hopefully @Zebra will see the tag and chec bac.

I'm probably going to take some time out, not having a good day .... so if I dont respond right away, just know that means Im not on-line here ....

Don't give up !!!

 

[Zebra]

I called standford and they said Linda Nguyen is not accepting any new patients at all right now. i get so emotional about this and feel so incredibly desperate.

Hi, @appa

I had suggested you ask the CFS Clinic Nurse Practitioner for a referral directly to Dr Linda Nguyen. Didn't you have an appt with her this morning? I hope it went well.

An internal referral (from one Stanford practitioner to another), is the best way to get your foot in the door, which is why I suggested getting a referral to Dr Nguyen from the CFS Clinic. Perhaps you can send the CFS Clinic Nurse Practitioner a message about this via MyHealth?

It seems like there is a HUGE demand for healthcare right now! Every specialty clinic is booking several months out, 5 to 6 week wait for imaging, it takes a lot of perseverance and it's hard not to get discouraged.

 

[appa]

Hi, @appa

I had suggested you ask the CFS Clinic Nurse Practitioner for a referral directly to Dr Linda Nguyen. Didn't you have an appt with her this morning? I hope it went well.

An internal referral (from one Stanford practitioner to another), is the best way to get your foot in the door, which is why I suggested getting a referral to Dr Nguyen from the CFS Clinic. Perhaps you can send the CFS Clinic Nurse Practitioner a message about this via MyHealth?

It seems like there is a HUGE demand for healthcare right now! Every specialty clinic is booking several months out, 5 to 6 week wait for imaging, it takes a lot of perseverance and it's hard not to get discouraged.

i will see if anyone i go to at standford can refer me to Dr Nguyen. I was to anxious to ask the chronic fatigue np i am seeing there. i did talk to my PCP in appointment i had afterwords about options and she encouraged me to reach out to the Gi i had good experiences with previously who has a private practice so less access to specialty testing but she is very easy for me to talk to. So i was able to make an appoinment at the end of august to talk to her for another opinion and then I will try and find someone at Standford if I cant see Dr Nguyen and talk again to the GI at UCSF about options.