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I've been dealing with this for a long time, not sure what to do anymore.

constipation diarrhea mixed ibs anxiety disability ibs c ibs d

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#1 emily785

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Posted 04 July 2018 - 12:44 PM

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I'm new to the forums, so forgive me if this gets long. Some backstory, to introduce myself:

 

I'm 23, and I've been dealing with what I think is IBS of some kind since childhood. I've always had trouble pooping, my mom says it was an issue even when I was a baby. I took colace when I was little, but that didn't make my poop normal so much as slightly easier to get out a couple of times a week. I still had strange episodes anyway - I'd have to go NOW, sometimes to the point where I couldn't make it to the bathroom in time, but when I sat down everything would still feel stuck and incomplete. It was and is really embarrassing, mainly because I can't control or sometimes even feel when I leak. I've been wearing pads since long before I started getting a period, but it's the only way I feel "safe" from making messes. It's given me so much anxiety and makes me not want to leave my house and do things when it's really bad. I worry about what's going to happen when I have a job. On the flip side, I sometimes go days without anything at all. It's better than leaking all the time and having to go over and over again, but it's also super uncomfortable when I do finally go. I know this isn't "normal," but it's my normal.

 

I saw a gastroenterologist for the first time when I was around 12, and she gave me a colonoscopy prep kit (which was awful... I hope I never have to do it again until I actually need a colonoscopy) and Miralax to try to help clean me out. The Miralax made me go every single day, but it was still really messy and hard to feel finished. I think I kept up with that for a couple of years (it's hard to remember now), but by the time I was in high school I stopped. I figured I knew my body and would rather put up with my normal than something that made me feel worse. I've seen other doctors for these same issues since then, and they've all said the same exact thing: That must be horrible, but we don't want to do anything too drastic, so just change your diet, exercise more, drink more water, and take colace/Miralax/docusate sodium/etc./etc./etc. and let me know if anything changes.

 

Nothing ever does, at least not permanently. I feel like they don't understand what the root cause of my problems actually are. They just throw softeners at me because they're what works for other people with chronic constipation. Like I said I feel like I know my body pretty well at this point, and I think a major reason why I've had these issues literally forever is because I have cerebral palsy... It obviously makes my visible muscles weaker, but I think it's also affected my stomach muscles, which makes it harder to push. Sometimes I push so hard I shake and give myself headaches. My CP has made me food sensitive as well, and I've always had a "sensitive stomach." The wrong foods, too much food in one sitting, stress and anxiety, not enough activity, having my period, and traveling all wreak havoc on me. My "flares" can last anywhere from a few hours to a few days, sometimes up to a week or more. I can fluctuate between having constipated (but still pushable) poop and "constipated diarrhea" within what feels like minutes sometimes. It's frustrating not knowing how to make myself feel better during one; I mostly just deal with it and hope it fixes itself on its own. Not once has a doctor ever suggested IBS, or that there may be an actual, diagnosable problem. 

 

My family is so used to me being like this that they just brush me off when I wonder if I might have it. They know I hate living like this, but they just take what the doctors say at face value. I've spent so much time stressing and crying about these problems and it feels like no one really listens to me. I wish someone would, if not to give me a cure or solution then to just make me feel validated. I think that's why I decided to start posting here, so I might feel less alone. If you don't have any answers for me that's fine, I'm more than happy to vent and commiserate laugh.png



#2 Ylba

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Posted 07 July 2018 - 10:44 PM

That's a really tough thing to go through. I have IBS also. My symptoms are not as severe as yours but I do understand not feeling completely empty after using the bathroom. Stay strong and keep fighting and advocating for yourself. Maybe find some people who have your same medical condition and muscle weakness and see if they experience similar problems and what they do to manage it. I'm sorry you're struggling with this.

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