[Sunstar]

I started trulance today and I am still constipated and unable to have a bm but I looked it up and it says it takes time to work, so I’m trying to be patient. The Trulance is also giving me really bad gas and I passed a really smelly fart working on a project with my boss which was pretty embarrassing but she knows I have a rare disease and didn’t say anything.

 

[NinaS]

Hey Sunstar,
I've already mentioned what I think could work here in terms of something to take.
But I'm curious, what is your exercise regimen? Is there a specific activity you do daily?

Someone else in this forum posted about a biofeedback treatment for an area in their body sort of near their abdomen.
That person was upset that they were going to the bathroom more frequently than desired (more bowel movements).
It reminded me how much movement that affects that area (bowel/abdomen) can trigger bowel movements.

I successfully experienced this myself, and it looks like this person probably experienced it from the biofeedback.
Another person with IBS-c here also mentioned they were sedentary but felt exhausted hence why they were sedentary, but had trouble getting that bowel movement.

So, I'm wondering if that's a trend that could lead to a possible solution...consistent physical movement that affects the abdomen could help cause bowel movement?
My regimen is now more like 20-30 minutes of jogging, spinning, or a tabata/scientific workout a day or almost every day.

Just curious if you've tried that (daily exercise for a BM)?
Yoga even has specific poses to help with constipation.

 

[NinaS]

Ohh and if your fear in doing exercise is that it could release gas (which it often does), just do your exercise outside. You can start doing it alone, if that's what you're most comfortable with.
You can also do your yoga outside at a local park or green strip. If you do let gas out, most people won't smell it if they're farther from you , and even if they do, the wind and air will just dilute it so its only momentary. Don't worry about them.
For you to get better or just get in better health, you need your exercise and doing it outdoors is probably the space where it least affects anyone else. Plus fresh air is good for you too.

Hope that helps.
And yes, you're fortunate your boss is kind and understanding.
But usually this has a limit even if they want to be kind and understanding. They may often change to keep a distance, or schedule a tele-meeting vs in-person. You may get put in separate meetings from your colleagues or the rest of department/company just to help make the other people's experience more pleasant.
In other words, just get better soon, so that the social/work implications don't happen or are minimal (this was a few bad months/episode, not your whole career there).
If it does get really bad at the end of the day. That's ok, do the best job you can, often they will see and value you despite this inconvenience and your haters (there will likely people who will start to dislike you solely for this reason--yes life is a bit unfair).
Worst case, you can always switch jobs, but best to do this when you're better so you don't just cause the same social experiment there.

 

[Sunstar]

Thank you for your reply. I ordered the Renew Life cleanse online so hopefully it arrives soon. I have a rare genetic motor neuron disease and my ability to move my muscles is very limited so I get very little exercise. My physical therapist suggested biofeedback but I’m still working on finding a place in my area and price range. Unfortunately I didn’t poop today either and I’m feeling very full.

 

[NinaS]

Thank you for your reply. I ordered the Renew Life cleanse online so hopefully it arrives soon. I have a rare genetic motor neuron disease and my ability to move my muscles is very limited so I get very little exercise. My physical therapist suggested biofeedback but I’m still working on finding a place in my area and price range. Unfortunately I didn’t poop today either and I’m feeling very full.

Hey Sunstar,

Don't ever feel obligated to do or follow the suggestions or advice of people here.
They're there for you to consider, to research, to ask the doctor about. Its always the reader's decision to follow it, explore it or not. There is NO obligation to do them and in fact its a better and safer idea to take time to consider them rather than straight follow because some of the advice may work for other people but not for an individual's case or they could cause the opposite reaction. Just always research something you're considering in doing..
I can totally understand if you prefer to at least try the chemical drug first. That's understandable, I used to follow dr.'s prescription first too, so I'm not offended. Just know there's something else that could help in case this one doesn't work out, or you just want to switch from synthetic chemicals to herbs.

I'm sorry about your neural-motor disease.
But if you can walk, then an exercise you can do is to take 20-30 minutes and walk more.
If you're in a wheelchair, you can ask the person who helps you to try to help move your legs into the yoga positions and hold for some time.
They could also help move your legs as if you were marching/running (while lying down), this does a similar stimulation in the abdomen.
If you're able to, maybe you can use your arms to move your legs into these positions anyway.

It does sound like the lack of movement, or the limited movement is a player here for why you don't get bowel movements.
I don't know if it was you or someone else who mentioned that a drug that had helped them get a BM no longer was working after some time.
It's possible you may run into the same situation over time with other drugs or herbs.

It's best to try and see what can be done to get that movement in, whether its slowly training yourself to move that way, walking longer for a contiguous period (20-30 mins), or asking someone to help you get those movements in if you can't control/move it yourself.

 

[Sunstar]

Thank you. I am mostly wheelchair bound but I will try moving my legs with my hands to see if that can stimulate anything. I have not pooped since I started Trulance so I think it’s going to take more than that to stay regular. I have tried aloe and senna tea as far as supplements go and they didn’t stimulate anything. I’m trying senna tea again to see if maybe the tea with the Trulance will get me some relief. I have not received the cleanse yet but I’m interested in trying it. I am open to natural remedies, pharmaceuticals, or exercise, whatever works at this point.

 

[NinaS]

Thank you. I am mostly wheelchair bound but I will try moving my legs with my hands to see if that can stimulate anything. I have not pooped since I started Trulance so I think it’s going to take more than that to stay regular. I have tried aloe and senna tea as far as supplements go and they didn’t stimulate anything. I’m trying senna tea again to see if maybe the tea with the Trulance will get me some relief. I have not received the cleanse yet but I’m interested in trying it. I am open to natural remedies, pharmaceuticals, or exercise, whatever works at this point.

Sunstar,

You seem like a positive and driven person.
I hope you also have this mindset in terms of approaching your motor neuron disease.
I saw that most of them (or any of them?) seem to have a cure.
Of course this made me sad.


I'm sure once you get some/sufficient movement in that abdomen/gut area (from moving your legs up like reverse childs pose for ex) you will probably stimulate the gut to start moving as well (most likely involuntary muscle would be doing the reaction).
So, I wouldn't worry so much about the IBS-c, just make sure to do the movement, take something that helps cause it (Trulance or Clenase more), fix your fiber..
But you also seem to have to do more than just take care of your IBS.

I hope you do save enough energy and determination to fight whatever you can fight of your Motor Neuron Disease, and just make the most of every day too.
At least in your head try to tell your body to do the things you want them to do, maybe by being stubborn with how you talk to your body, you maybe able to hold on to some functions for longer, and so have a better quality of life for longer.

I have two experiences in my life with different diseases which I fought and had different levels of success (aside from IBS, which isn't even classified as a real disease anyway).

1. Asthma and lung function
2. Losing vision in an eye and control of its position

1. Asthma and lung function:
I had asthma since I was a very young child, I may have had my first asthma attack when I was 4 or 5? Anyway, I had my worst asthma attack around age 16. I was in bed for two weeks. I couldn't even sit to drink my soup. When I moved there was a terrible cough that would kind of inhibit or block my breathing? Anyway, it was horrible, and yeah I was basically unable to move my upper body (chest,spine, head), I could move my arms without causing a problem. I don't know if when we're young we're a bit dramatic, but it kind of felt in my head that I feared I could die or have a critical reaction if I sat up or walked (my cough and breathing inhibition was so bad when I moved my upper body). But there was this academic competition coming up in a week, and I had prepared for it prior to getting sick. I wanted to compete, but again, I couldn't even sit to study/take a practice exam. I was tired of my existence being mostly a vegetable (also I think I rarely went to the bathroom when I had this attack b/c I barely ate and couldn't move much either). My reasoning was that I was tired of existing to just be in bed and not do the things I'd like to, or go to the competition I already paid for and would probably need for my college applications and that I just wanted to go (plus I liked running and skating and other outdoor activities that I couldn't do). My mom had left the house, so one day after those two weeks, I basically said "screw that" (although I didn't use those words). "If I die, I die, I'm tired of not being able to do anything or move."
I remember mustering all the will power and strength I had and I sort of sat up for a second.. But not long. I rolled off my bed to the floor, found my socks and shoes and put them on.. But only to start crawling, see I couldn't stand up, somehow being vertical, was too difficult for my lungs. So I crawled slowly, but surely maybe 200-300 feet to the patio door. There I opened the door (again using all the strength I could tell myself I had or would create to use. IE, I would trick my brain to "give it all" if that's what it took to get this done. B/c I'd feel the breathing attack coming on everytime i was vertical, and here I had to pull the door. I told myself I didn't care if it meant I had nothing left (no energy to move or breathe). In reality, I'm sure I did care, but I think I had to tell my brain I didn't so that I wouldn't fear the movement and effort it required and the corresponding breathing attack (repeatedly, sometimes desperately gasping for air) that would ensue from the effort. Once the door was open, I crawled again until I made it to the grass. There was fresh air, there was sunshine, and there was green grass underneath my knees.
I figured, "its ok if I die here, I made it this far, I accomplished something, I got out of bed."
I was content to have made it that far, so I took a little break just there.
Finally, I forced myself to get up, another effort which required the same thinking as before.
Once standing, I still could see that my lungs weren't happy, and i was coughing and struggling to breathe.
I told myself "I don't care."
"I don't care, I want to run, I'm going to run this."

And I visually pictured my lungs.
I saw them the way they felt to me.
They felt squeezed and tight and crumpled like raisins. They felt clogged and stiff like the dry mucus that was sometimes coming out of my cough. They were in pain, and just trying to do their best to exist and function. But their best right now was not enough for me.

So, I imagined I could open them up.
Maybe I could open my lungs up like a balloon.
So, I used the visual I already had in my head of my lungs and tried to see if I could push them (open/outwards).
I don't think I had control of them immediately, but I kept imagining them and I would force an inhale, a deep inhale. But instead of just using my nose, I would force my brain to think of opening and pushing my lungs as large as they possibly could. I would inhale and hold the breath and push the lungs outward and hold. I did this for a bit, and at some point I got some control of my lungs (after fighting off the coughing and the gasping that happened at first). So, I kept this visual of this balloon I'm inflating and forcing open and practiced breathing. Once, I had some control of keeping my lungs open... yes, I did.
I ran.

I followed the same thinking I mentioned before to fight my fear. Which was something like "I don't care if I die, (because the asthma was so painful and the gasps for air during the attacks frightened everyone, including myself to wonder if I could breathe) I'm going to run, and I'm going to breathe."
So, yeah I think my heart rate went up a lot in that first step and those first few steps. Yes, I did gasp for air and cough.
But I just kept that mental visual of my lungs, and there was now this connection between my brain and my lungs.
I had some control of them now. I kept trying to communicate and put tension on my brain to tell my lungs to stay open and hold open.
Breathing helped.
While I inhaled I also would tell my brain to hold that breath and expand the lungs even greater, push that balloon (lungs) even more/bigger and hold for longer (to get the oxygen and control).
Eventually, I was able to make that run/jog and I think I did two or three loops (not a long distance) in my backyard. But, I did it.
I think 2 days later, most if not all my asthma was gone...
And I don't know if you'd believe me, but its the truth... I haven't had an asthma attack since an its been almost two decades since then.

I'm sorry the story is so long. I guess I was just trying to be descriptive.
The point is, see if you can visualize the body part you are trying to still move. See if you can still talk to it and form/keep a connection with your brain to that body part.
Put the pressure into the thought/brain more so than the body part (as its the one communicating to it) then try to put pressure for that body part to move the way you're asking it.
See if your breathing can help with the movement (inhales and exhales timed with specific movement or hold).
This may not work to help you gain more movement/control (or it might).
But, in the least, it may help you to keep the connection you still have, and slow down its loss.

That is my hope, and I hope you fight the loss of motor connection, even just to enjoy higher quality of life for longer (IE even if you will lose it eventually).

2. A microorganism ate some of one of my eyes. I can barely see from it. I'm probably legally blind in that eye, I can't even use it to read...
Anyway, I should have noticed i was losing so much vision earlier, but I didn't, I just relied on my good eye. At this point, I'm just trying to prevent the eye from completely looking crazy and rolling around on its own. So, at least a few times during the week (I should probably do this twice daily though), I go to the mirror close the good eye and force the bad eye to look straight, and spend a few minutes just using the bad eye and moving it where I want it to go. I find this exercise gives me a little more control of my eye. I have tried to see if I could "talk to my eye" to tell it to regrow the color cones and some of the nerve that is lost.. But yeah, I haven't seen much success there (and its been years of me trying that). I do have a little bit of success in controlling it when I close the good eye, so that's what I do now.

Point is the same, trying to talk to your body from your brain to try to get your body to move the thing you want it to move, trying to establish a brain/muscle connection.

No, I'm not a doctor, but I do know doctor's don't know everything and sometimes, determined people can have better than expected results from a diagnosis and sometimes survive much longer than expected or overcome things that doctor's didn't expect them to. My grandma at age 85+ had a stroke that immobilized the entire half of her body, but apparently because she was both determined and had walked everyday of her life for 3 decades prior, her heart was young an she recovered, and was even able to use her right hand again to write (which she was told by the dr. she'd NEVER be able to do again). My grandpa had some sort of cancer or something in his throat and was supposed to die when my mom was like 4 years old..He did some herbal treatments from my grandma's side of the family, and lived till 80+ (my mom was 50+). I do believe if we're determined, we can probably do better than what doctor's expect us to do.
That's all I wanted to help convey.
Best always!

 

[Sunstar]

Thank you for your advice. Motor neuron disease is rough but I try really hard to stay positive. I was told I would never work but I work 25 hours a week and am very successful at my job. I think that’s awesome that you conquered your asthma. I have asthma as well so I know the struggle.

 

[NinaS]

Thank you for your advice. Motor neuron disease is rough but I try really hard to stay positive. I was told I would never work but I work 25 hours a week and am very successful at my job. I think that’s awesome that you conquered your asthma. I have asthma as well so I know the struggle.

I'm so happy to hear that.
Rooting for Sunstar here!

 

[Sunstar]

I had a bm today with senna, lactulose and Trulance but I didn’t get everything out. I looked at the cleanse and unfortunately the ingredients are all things I have tried before that did not work, but I’m going to give it a shot because maybe combination work. I also messaged my doctor to let her know I’m still constipated.

 

[NinaS]

If you found something that works, just keep using it.
My only reminder is once again to get some daily movement in.
We wouldn't want these drugs/herbs to stop working at some point, and it does look like lack of movement could be contributing to your movement-resistant gut (while most people's guts are being stimulated by movement affecting the abdomen region).
These drugs may also have been designed with the idea that people are getting some stimulation to their gut from movement too, so like it could have been counting on that extra help...

 

[Pajarorose]

Hey Sunstar,
I've already mentioned what I think could work here in terms of something to take.
But I'm curious, what is your exercise regimen? Is there a specific activity you do daily?

Someone else in this forum posted about a biofeedback treatment for an area in their body sort of near their abdomen.
That person was upset that they were going to the bathroom more frequently than desired (more bowel movements).
It reminded me how much movement that affects that area (bowel/abdomen) can trigger bowel movements.

I successfully experienced this myself, and it looks like this person probably experienced it from the biofeedback.
Another person with IBS-c here also mentioned they were sedentary but felt exhausted hence why they were sedentary, but had trouble getting that bowel movement.

So, I'm wondering if that's a trend that could lead to a possible solution...consistent physical movement that affects the abdomen could help cause bowel movement?
My regimen is now more like 20-30 minutes of jogging, spinning, or a tabata/scientific workout a day or almost every day.

Just curious if you've tried that (daily exercise for a BM)?
Yoga even has specific poses to help with constipation.

I am 80 year old woman. I have IBS-C. I walk from one end of the house to the other multiple times and do a number of stationary leg lifts and squats in the morning. This definitely helps me go. I do believe that some exercise is necessary to promote bowel function. I observed this in my little doggies as they have to walk to be able to go. Hope this helps.