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so sorry you haven't had any luck yet but good for you for sticking to the program. yes it sounds like you've made some progress but so sorry you still have all the pain.

have you discussed the pain with your pelvic floor PT ? hopefully she/he can help you with that.

keeping you in my prayers.
 

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Discussion Starter · #42 ·
have you discussed the pain with your pelvic floor PT ? hopefully she/he can help you with that.
Yep, we're working on some things. Tonight pain is rough again for no reason. Feels like being kicked in the groin a bunch of times.

Thanks.
 

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Yep, we're working on some things. Tonight pain is rough again for no reason. Feels like being kicked in the groin a bunch of times.

Thanks.
omg that sounds terrible. so sorry you are suffering like this. hope someone can help you.
 

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Discussion Starter · #44 ·
Little update from me, I finally was able to get into the PT with biofeedback at the beginning of March, the PT found when I was sitting and attempting to push, instead of relaxing I would tighten up. He also said I was pushing far too hard which was likely a result from the learned behavior my whole life. I've been doing the biofeedback for a month and a week or so now, and I now can do more of proper pushing but it is difficult and requires concentration and patience. I've noticed sometimes my bowl movements have been a little better and easier, but not always. My PT says I'm making progress but there is still work to do. He strongly believes my issue can be corrected so I am doing as much as I can to make that reality.
 

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thanks for the update.

i had similar problems--i would tighten up instead of relax and also would push too hard. and yes, proper pushing does require a lot of concentration and patience.

that's terrific that you've been making progress. keep up the good work!
 

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Well I have good news and bad news. The good news is I've mostly learned to control my pelvic muscles and can now do the appropriate pushing and squeezing, and I am almost within normal pressures according to the appointment earlier. The bad news is I am still in pain and if I eat even the slightest bit too much its agony the entire evening. I'm still not able to have good bowl movements despite this now being much better and also still on nearly 2 doses of Miralax. I'll be following up with my GI shortly.

I don't know how much more of this i can take... the years are going by with no relief and not able to do anything with my life but sit in my parents house and suffer.
 

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Did yo mean I CAN do appropriate pushing and squeezing? Did you try motegrity med? It works for some. It worked for me but stopped after few months. Deep breathing and Yoga will relieve abdominal pain. How about OTC laxative? I take dulcolax every three days and it clears my bowels. No diarrhea or loose stools.
 

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so sorry for all your pain. i really wish someone could help you . have you tried going to a pain management doc? wish your gastro doc could help you.
 

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Did yo mean I CAN do appropriate pushing and squeezing?
Yes, sorry. I meant I can "now" do them. I have noticed some improvements in that department, now when I feel stool there I can mostly have a bowl movement properly.

so sorry for all your pain. i really wish someone could help you . have you tried going to a pain management doc? wish your gastro doc could help you.
The problem is most pain medications have side effect of constipation... so out of the question sadly knowing the mass of stool they found last time.

Its 2 weeks later, Pelvic Floor Therapist says my muscles are completely correct now but I should keep the exercises up for a little longer.

Another change though is that I am having much more diarrhea and loose stools now but still feel constipated at the same time if that makes sense.

I guess I would explain like, I feel "full" and constipated, but when I finally go it is mostly diarrhea.

I am considering 2 options:

- With the pelvic floor issue solved, is this the result of the miralax now able to do something and start forcing all the backed up stool to begin to clear

- Or is it backed up so far that the only thing getting by is diarrhea (in fact this is what caused my initial misdiagnosis as a child and caused over 10 years of making the constipation worse without realizing as I may have mentioned)

Really don't know how much longer I can take this. Need X-rays done I think and see if that mass is still all in there. At mayo clinic they said I have 5x the amount where doctors get "worried" about a constitution issue... Meeting with GI doc in a few days. We'll see what happens.

What I really want to know is, how do people with these issues keep up a social life? Mine has fallen apart entirely through the last 4 years of suffering with this to the point where I no longer have contact with any friends (most moved away to college/work)
 

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pain management would not prescribe opiods to someone suffering from constipation. there are other ways to relieve pain. have you tried any antispasmodics to relieve your pain?

hope your appointment with your GI doc goes well. hopefully she/he will order xrays to see if the mass is still in there.

good luck.
 

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Well I have good news and bad news. The good news is I've mostly learned to control my pelvic muscles and can now do the appropriate pushing and squeezing, and I am almost within normal pressures according to the appointment earlier. The bad news is I am still in pain and if I eat even the slightest bit too much its agony the entire evening. I'm still not able to have good bowl movements despite this now being much better and also still on nearly 2 doses of Miralax. I'll be following up with my GI shortly.

I don't know how much more of this i can take... the years are going by with no relief and not able to do anything with my life but sit in my parents house and suffer.
Good that you learned how to control your pelvic muscles, so sorry that there is still pain. I hope it goes away too
 

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Discussion Starter · #52 ·
Some update...

Good that you learned how to control your pelvic muscles, so sorry that there is still pain. I hope it goes away too
Thank you

I have now completed the PFD therapy, and had an X-ray showing my colon is now mostly empty. GI has be reducing the evening MiraLAX dose keeping the morning dose. We don't know what is causing the discomfort still. I really hope this works because otherwise we've tried pretty mucuh everything....
 

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Discussion Starter · #53 ·
3 months later. no luck. Usual things are just making everything worse, trying fiber etc. Everything that is supposed to help since solving PFD just worsens this.

I've been in communication with the Mayo Clinic to return there since is been nearly a year. I have absolutely no life, at all, so this is literally my last option. I don't know what else to try... I've tried everything in the damn book and I still can't work, go to school, or have a social life. What type of life is that.
 

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so sorry. i hope and pray that mayo can help you.
 

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I've been on Dr. Schulze's Intestinal Formula # 1 for over 5 years now. I take it daily during my main meal of the day. It's all-natural/herbal. You should definitely try it. You can buy it on Amazon or directly from his website:

 

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3 months later. no luck. Usual things are just making everything worse, trying fiber etc. Everything that is supposed to help since solving PFD just worsens this.

I've been in communication with the Mayo Clinic to return there since is been nearly a year. I have absolutely no life, at all, so this is literally my last option. I don't know what else to try... I've tried everything in the damn book and I still can't work, go to school, or have a social life. What type of life is that.
So sorry to hear that, but I'm sure you'll find a solution soon.
 

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Discussion Starter · #57 ·
@flossy Thanks, I've tried it and unfortunately I got way worse.
@flankking I appreciate your support but doubt this will be the case.

I was in the emergency room again due an onset of intractable pain that did not stop and the inability to have a proper bowl movement. Since then still I am not having proper bowl movements. In addition, the more I try things to help, the worse I get even when undoing the change.

Something is very wrong here and I don't know how it will be found at this rate. Mayo Clinic doctor wants me to return for some tests but I have absolutely no idea how I will get there at this point.

I'm getting very tired of living this utterly destroyed life.
 

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so very sorry for all you are going through.

i had both pfd and colonic inertia and things got so bad for me that i finally had ileostomy surgery . kind of extreme but it did give me my life back.

keeping you in my prayers. good luck.
 
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Discussion Starter · #59 ·
Thanks Annie Your continued support means a lot.
Well extreme pain here again, this time with a lot of movement and nearly 2 doses of MiraLAX, one in the morning and one now.... and all I did was eat a normal sized dinner.

Also, Mayo Clinic doctor was told about my ER visit and apparently is extremely concerned. Most people with theses symptoms do not have the type of pain I have apparently and that scares me. At this point I don't even know how I'm going to get out there let alone stay in a hotel. And they're only admitting COVID and Cancer patients and of course life threatening things.

My luck just gets worse and worse. Its now about 4 years I've been dealing with this pain.
 

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so sorry for all your extreme pain and misery. hope you can somehow get to Mayo and see a doc. keeping you in my prayers.
 
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