Have I told you how much I hate bowel IC???

[Harley07]

You need to change doctors... I was diagnosed with lupus 26 years ago at 1st my systems were mild, in 2011 I had my 1st really bad flare got the point I could barely walk, had reactions to meds they gave me that led to being hospitalized, then later that year I had a lung hemorrhage that landed me in the hospital again , was diagnosed with vasculitis .... Since then I've been getting series of Rituxan infusions every 6 months... 2015 I was having blood pressure Issues that lead to a retinal hemorrhage in my left eye lost sight for a while had to get a injections in my eye, and now a got back most of my sight with it. 2016 I started getting Neuropathy, 1st noticed it with numb feet and increasing fecal incontinence on top of urinary IC I had.. Last Sept got covid for the 1st time was in the hospital for 3 weeks and oxygen at home for 6 weeks after that... I haven't worked since 2012 I'm on disability.... I don't pay attention to test results and let my wife handle that, and despite all my heath issues I try to stay positive, stay active and not let it keep me from doing things I love riding my Harleys, playing golf 4-5 times a week....

 

[greatlake5]

It’s amazing how much poop can exist in the large intestine and colon. If you do go for a couple of days, without going, it can get very full and give its owner quite a shock on the occasion you find out how much it holds

I can't remember the last time I went a couple of days without having a BM. I don't have gastroparesis. I have pelvic floor dysfunction and weak control of the external sphincter along with bladder incontinence. I'm not a doctor but I know when I have a healthy diet (including fiber supplement), almost all of my BM's are large. Consistency of my stool is usually solid (not loose, firm or hard). My health is good despite having IC.

Thankfully almost all of my BM's happen when sleeping, the early morning and/or the evening. Which keeps me from having daytime accidents (rare but it does happen). So my BM frequency is one to two times per day. As for how much my large intestine and colon contains, I suspect a BM can be
fairly large and if you empty this, it could be gigantic (~12" to 24"+). I know. Odor can be difficult without using internal deodorants. Again, I know.

The poster has been having terrible accidents. The worst is when it happens in public. I'm sure your doctors are doing everything they can do to help maintain your health. I wish I could help. The best thing I can do is to support you. Stay strong.

 

[Diaperman95]

I can't remember the last time I went a couple of days without having a BM. I don't have gastroparesis. I have pelvic floor dysfunction and weak control of the external sphincter along with bladder incontinence. I'm not a doctor but I know when I have a healthy diet (including fiber supplement), almost all of my BM's are large. Consistency of my stool is usually solid (not loose, firm or hard). My health is good despite having IC.

Thankfully almost all of my BM's happen when sleeping, the early morning and/or the evening. Which keeps me from having daytime accidents (rare but it does happen). So my BM frequency is one to two times per day. As for how much my large intestine and colon contains, I suspect a BM can be
fairly large and if you empty this, it could be gigantic (~12" to 24"+). I know. Odor can be difficult without using internal deodorants. Again, I know.

The poster has been having terrible accidents. The worst is when it happens in public. I'm sure your doctors are doing everything they can do to help maintain your health. I wish I could help. The best thing I can do is to support you. Stay strong.

I would take fiber if I could but that is a no no for gastroparesis. It really can lock my stomach up. I am not even suppose to eat fresh fruit with a peel on in or anything with much in fiber. Today other than a near miss at therapy has been pretty good. My stomach has had one of the best days for the year. I ate a Sancho and taco today with a ice cold tecate and lime in a frozen glass at my favorite Mexican restaurant. So far all is good I did not get sick. I only get a few days a month I can really eat a good size meal, the rest of the time I have to eat small amounts and stuff that digest real easy. I eat a lot of grilled fish. I use to love fish but after 7 years of it multiple times a week it is getting a bit old. LOL I make do and I really love hearing encouragement from you and my fellow incontinent friends. Well really from all my friends here. You are all like family at this point but I know the incontinent members understand a bit more.

I am trying to take my linzess and when I need mirlax around 7 or 8 PM. I would much rather have a accident at night or even poop in the potty in the morning. But I think the logic to keep my colon empty during the day is smart. The only issue is with GP is just because you eat or take meds in the evening does not mean they make them through my stomach until the next day. I can't tell you how many times I have taken my scheduled pain meds and hours later I feel like I am drying out, only to get slammed by it later when I take another dose and they both exit the stomach at the same time. People with GP that have diabetes has the same thing happen with their blood sugar. I am blessed not to have that.

Thank you for the kind words. This community really helps me and I hope my shares can help others feel less alone.

 

[Zeke]

Thank God no. I had one time I was up to bowl and my stomach turned I threw my ball it struck (thank God) and I ran the private bathroom. Thank God it was empty. I just got my diaper down in time and I blew shit all over the back of the seat as I was sitting down. But some how kept it off my clothes. Thank God for the strike because no way I would of made the spare without shit in my diaper. There was one other time I finished up and put my equipment up and was just visiting afterwards and it hit me. I told the wife I am heading to the car I am not going to make the restroom. As I walked across the lobby to the front doors it was just coming out. But it was not total liquid it was more like soft serve ice-cream thickness. It stunk but no one was next to the door and I made it to the car. But so far.. no I have not been embarrassed at the bowling alley yet. I almost crapped myself in physical therapy today though but I again made it just in time. Same thing pooping as pants came down. But it would not been as bad because the therapist knows I wear diapers and why. Normally the days I bowl I do not eat all day until I am done or on the last game. That and I never take laxatives the day before or the day of until I get home. My poop is not always liquid, I do still get stopped up from time to time and I do still have a hard time holding even when it is even firm. I have had countless firm stool IC as well. The difference is when firm the urge gets stronger and stronger until I just cant hold but I get a bit more warning, when soft I get the slightest urge then with in seconds to a few minutes I just feel it come out and I can not squeeze it off or anything. I have zero say in it. most the time I have numbness around my front edge of my anus to my balls. I have a few plastic pants but they are not very good. I think I am going to invest in some good pulpants if you know of any good ones. I want to try those Black protect briefs but they are $80 each

No eating soft serve ice cream before you bowl either as then your poop that has the consistency of soft serve ice cream WAS soft serve ice cream in another life.

 

[PaddedPonyboy]

That is how my gastroparesis was found. I was scoped at 2 in the afternoon nothing to eat or drink after midnight and it was in-fact 8pm the night before and I had a grilled chicken sandwich with olives and he shown my the pics. My stomach did not have a little left over it was full. It should only take 4 hours for food to move through. so the did a gastric empty study but it was a few weeks later and my stomach was not in flare and it emptied, but thankfully my GI new it was because my gastroparesis was not flaring. so he repeated the test a month later when sick again and I failed it big time. I have had 3 or 4 of those studies over the years and they all come back positive but the one.. So on my last gastric empty study after 4 hours later not only was the eggs and tracer in my stomach still but some was still in my esophagus. So for sure follow up on that. Try to do it when in a flare and If you are not in a flare & it shows negative and everything good don't put a lot of faith in it and try to have it redone. Are you a diabetic. Most people that get gastroparesis are. I am not and like everything else it is idiopathic... Meaning they have no clue why. But I went for years with very low B12 and it will damage nerves fast. I have pernicious anemia meaning my body does not make the chemical that binds to B12 so it can be absorbed from my food. So any and all B12 goes straight through me unless I take injections. It really causes memory fog and a lot more because it is what makes up the protection to the lining of your nerves. PM me if you want to know anything about gastroparesis. At this point I know more about it than most all family doctors. It is pretty rare. I will also tell you from experience weed makes it way way worse. It is a double edge sword because it helps the nausea but it slows the stomach and makes you hungry. For 2 years I had a doctor tell me it was the best thing for my nausea. Before getting my gastroparesis I had never even tried it, but I was a smoking gummy taking fool for a couple years and they was the worst years of my life as far as gastroparesis goes. Doctors are starting to realize this now. My gastric pace maker saved my life. I was fixing to spend the rest of my life with a feeding tube. Because my doctor did not want me to get a stimulator. It was the best decision I ever made. Not a day went by for about 4 years that I thought about seriously putting my pistol under my chin. I was that sick. My family was all that kept me from doing it. So if anyone has this diseases a little or a lot and wants to talk I am a open book and I have lived through the pure hell of constant GP attacks. There is hope!

I wish you the best and get that test done it is easy and painless. But try to do it when you are bloated and not feeling well. For me in the first year it was about 50% of the time, 5 years later it was everyday.

wow, that's nuts! they didn't tell me how much undigested food was left in my stomach, but it was almost the same as you, i got my scope done around 1 - 2 pm. i had no idea it should only take 4 hours for food to completely leave the stomach, well then that's definitely an issue! thank you so much, i will definitely give the hospital's GI department a call and follow up, because they just never contacted me, even for the noted inflammation in nearly all of my GI tract, and the hiatal hernia. that's a great idea to make sure to do it during a flare, i'll make sure to keep an eye on when it's at its worst and try to reach out to them. i am actually not diabetic, either! i've been tested for it almost every time i've gone to the doctor complaining about. anything. and because I'm 280 pounds i am always screened for diabetes. i am very muscular with a lot of fat, but they always just look at the number and assume that i am 100% fat when i'm not, i have very dense muscle mass. luckily my A1C is fine and i've never even been pre-diabetic. it makes me feel relieved to know that you are also not diabetic, because whenever i was researching gastroparesis the number one thing that came up was diabetes, it was beginning to scare me a little.

THANK YOU FOR TELLING ME WEED MAKES IT WORSE!!!! i had been using weed medically for PTSD and pain for about 4 years and while it helped with my nausea initially, like you, i noticed that it was beginning to make my stomach feel worse, not better. i was noticing an increase in pain and general discomfort after smoking, and i was wondering if cannabis has an effect on gastroparesis. i had been searching around only to really find nothing. thank you, i literally was asking myself "Wait, could the weed be making it worse???" I stopped smoking about a month ago, and I'm really glad I did, because I've noticed the pain has gone down a bit, even if I'm still struggling to eat and getting nauseous, i'd much rather not be making it actively worse anymore. i also was not happy about the increased appetite because i just couldn't eat enough to keep up... plus, now i'm saving money LOL

i'm really glad that you're still around and kicking! i have gotten to that point as well where i was just ready to be done with it all because i couldn't see a light at the end of the tunnel, being this miserable, exhausted and in pain all the time. i'm glad to hear that your gastric pace maker improved the quality of your life that much, that's inspiring and it gives me hope! my partner has crohn's disease and her going through the same things as me helped a lot in not feeling alone with my GI issues, but she doesn't understand everything i go through, so talking to you has been very refreshing! thank you! i'm glad there's hope!!!

i'll let you know how things go with the gastric emptying study, thanks for being such a huge help in all of this! you're awesome! i'm really glad you're here, you are such a helpful guy : D

 

[Diaperman95]

wow, that's nuts! they didn't tell me how much undigested food was left in my stomach, but it was almost the same as you, i got my scope done around 1 - 2 pm. i had no idea it should only take 4 hours for food to completely leave the stomach, well then that's definitely an issue! thank you so much, i will definitely give the hospital's GI department a call and follow up, because they just never contacted me, even for the noted inflammation in nearly all of my GI tract, and the hiatal hernia. that's a great idea to make sure to do it during a flare, i'll make sure to keep an eye on when it's at its worst and try to reach out to them. i am actually not diabetic, either! i've been tested for it almost every time i've gone to the doctor complaining about. anything. and because I'm 280 pounds i am always screened for diabetes. i am very muscular with a lot of fat, but they always just look at the number and assume that i am 100% fat when i'm not, i have very dense muscle mass. luckily my A1C is fine and i've never even been pre-diabetic. it makes me feel relieved to know that you are also not diabetic, because whenever i was researching gastroparesis the number one thing that came up was diabetes, it was beginning to scare me a little.

THANK YOU FOR TELLING ME WEED MAKES IT WORSE!!!! i had been using weed medically for PTSD and pain for about 4 years and while it helped with my nausea initially, like you, i noticed that it was beginning to make my stomach feel worse, not better. i was noticing an increase in pain and general discomfort after smoking, and i was wondering if cannabis has an effect on gastroparesis. i had been searching around only to really find nothing. thank you, i literally was asking myself "Wait, could the weed be making it worse???" I stopped smoking about a month ago, and I'm really glad I did, because I've noticed the pain has gone down a bit, even if I'm still struggling to eat and getting nauseous, i'd much rather not be making it actively worse anymore. i also was not happy about the increased appetite because i just couldn't eat enough to keep up... plus, now i'm saving money LOL

i'm really glad that you're still around and kicking! i have gotten to that point as well where i was just ready to be done with it all because i couldn't see a light at the end of the tunnel, being this miserable, exhausted and in pain all the time. i'm glad to hear that your gastric pace maker improved the quality of your life that much, that's inspiring and it gives me hope! my partner has crohn's disease and her going through the same things as me helped a lot in not feeling alone with my GI issues, but she doesn't understand everything i go through, so talking to you has been very refreshing! thank you! i'm glad there's hope!!!

i'll let you know how things go with the gastric emptying study, thanks for being such a huge help in all of this! you're awesome! i'm really glad you're here, you are such a helpful guy : D

Zofran 8mg that dissolves under the tongue is what I use for nausea. That and compazine is my secondary nausea Med and then I have vistiral 50mg I can take for nausea also. These are all prescription meds but vistiral is a lot like benadryl and it helps a little too. Now IV Benadryl... That is my main go to at the ER or hospital. So If the nausea gets to bad these are great meds to ask the doctor for. Best of luck I am always down to chat if you need help or want to vent.