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Well everyone, another dr. appt. has come and gone.
Had a really good workup and talk with my GI doc about my symptoms that don't seem to be common to MC, specifically, my stabbing LLQ pain and what feels like a functional problem. How's this for proactive, I even showed him a picture of my BM's on my cell phone. He laughed but found it to be interesting.
He is also encouraging me to get a second opinion at IU medical school (scheduled for March) because he re-read my results from my defocography performed at IU a couple years ago which stated I do not completely evacuate when I go to the bathroom. I think this problem has only worsened, perhaps exacerbated by the significant amount of throughput as a result of MC. Who knows... But time to re-explore my functional problems now.
So as he listened to my symptoms, he believes that in addition to MC, that I may have pelvic floor dysfunction. I think this is plausible as I had (and sometimes still have today) pelvic pain issues (like an interstitial cystitis) for which I was formerly treated using trigger point release therapy (i.e. PT for my insides) and the Stanford Protocol of Paradoxical Relaxation.
So he wants me to see a local physical therapist to help me evaluate, and if need be, reacquire my ability to coordinate my bowel movements so that I can hopefully regain complete evacuation. I saw this person about 5 years ago for my pelvic pain I am encouraged to learn that she may be able to help with my motility problem. I think this hypotheses has a lot of credibility.
Additionally, I am going to remain on 2 Asacol HD's/day to control my inflammation. I told him the diet appears to be helping with respect to the MC symptoms, but I wanted the reassurance of staying on some pharma for a while longer to ensure control of the inflammation. He and his nurse are interested in studying my progress on the diet as they both told me this is such a rare and difficult disease to control.
So all in all, I had a good day. I have quite a bit of work ahead of me, PT-wise, but I pretty much know what I am in for and look forward to getting to the bottom of my other problem.
Rich
GI Doc Appt Today
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
GI Doc Appt Today
"It's not what I believe. It's what I can prove." - A Few Good Men
Hi Rich,
So glad the visit went well! And your doc seems open to learning from you.
That's good that you've identified a possible cause for your non-MC symptoms, not to mention a reasonable treatment plan. All sounds very encouraging. Also, it appears you are softly, softly catchy monkey, but I won't say any more because I don't want to jinx you. SHHHHHH, I'm tiptoeing away..............
Love,
Polly
So glad the visit went well! And your doc seems open to learning from you.
That's good that you've identified a possible cause for your non-MC symptoms, not to mention a reasonable treatment plan. All sounds very encouraging. Also, it appears you are softly, softly catchy monkey, but I won't say any more because I don't want to jinx you. SHHHHHH, I'm tiptoeing away..............Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Martha,
I'm glad you enjoyed that! I just need to delete it before I accidentally forward it to a client :) Wouldn't that be an awkward moment.
And Polly,
I am learning, "softly and slowly" - to quote Gabes. Great line! She is the master for sure. I appreciate, so much, your unconditional support.
love you too
Rich
I'm glad you enjoyed that! I just need to delete it before I accidentally forward it to a client :) Wouldn't that be an awkward moment.
And Polly,
I am learning, "softly and slowly" - to quote Gabes. Great line! She is the master for sure. I appreciate, so much, your unconditional support.
love you too
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich,
Glad you had a good visit. It's always refreshing to hear someone say they had a GOOD GI visit
I'm curious, did the "PT for your insides" help with IC? Hopefully PT will help address the other problem as well. Keep us posted on your progres - I am interested to learn more about this.
Mary Beth
Glad you had a good visit. It's always refreshing to hear someone say they had a GOOD GI visit
I'm curious, did the "PT for your insides" help with IC? Hopefully PT will help address the other problem as well. Keep us posted on your progres - I am interested to learn more about this.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Mary Beth,
I would say that the PT for my internals, when performed religiously, in addition to external stretching, helped my IC type symptoms about 75%. I had some very insidious suprapubic pain that worsened when my bladder was even slightly filled. It was, and still is, the most severe pain I have experienced in my life. Not that I want pain, but I would rather live with the LLQ colon pain as opposed to IC type pain. Vicodin would barely touch it. Valium, in moderate doses, helped somewhat and was encouraged in short durations by Stanford. What started all of this, I have no clue. My urologist was getting reading to do a nasty procedure on my prostate too. He even removed a blockage from one of my seminal ducts and said I would feel like a new man. Nope. Some say stress, some say inflammation, some say muscular tension that causes inflammation. No one really knows. I also learned from both Cleveland Clinic and Stanford that the muscular bands in my pelvic floor are over-toned. Kind of like someone who does a lot of kegel exercises and situps, yet I do none of these. In fact, I am NOT supposed to do sit-ups, kegel (I know I am a male) type exercises, etc. I am not loose Pelvic Floor wise, I am too tight. But as I recall my uro workups, my seminal ducts were also inflamed. I am just inflamed and tensed in my entire pelvic region seemingly.
But when I had my original therapy at the Cleveland Clinic years ago, she also told me that I don't drop my pelvic floor when I am supposed to. I can tell that has worsened. In my mind, it feels like my nerves (or signals to tell the various parts of my colon and PFD what to do and when) are failing. Probably not the case, but that is the best way I can describe the sensation, or lack thereof.
The therapy process involves a lot of discipline, a good therapist, and, you have to be able willing to release trigger points inside your pelvic floor and externally. My wife, bless her heart, was even taught how to do the internal work on me where I could not reach. She went through the week long training with me. I might have to recruit her again. You really have to have a good spouse, partner, etc. to assist with this process unless you have access to a trained PT, and there aren't many who can deal with PFD effectively (so I've learned).
So I am a little mad at myself for having abandoned this therapy once my IC symptoms felt somewhat managed. I really need to treat myself better.
I know this all sounds so weird, but I met many other people from around the world with a similar condition, pain, and dysfunction.
Most of the people I still keep in touch with whom I met learning the Stanford Protocol have improved. Some did not because they were later diagnosed with pudendal nerve entrapment and other anatomical issues.
I grow exhausted thinking about all of these, but I have fallen of that wagon and need to get back on.
Does this ever get any easier?
If you want to read more about this, go to http://www.pelvicpainhelp.com/. To quote the protocol, it is very "paradoxical".
Rich
P.S. Joe, thanks for the support as always.
I would say that the PT for my internals, when performed religiously, in addition to external stretching, helped my IC type symptoms about 75%. I had some very insidious suprapubic pain that worsened when my bladder was even slightly filled. It was, and still is, the most severe pain I have experienced in my life. Not that I want pain, but I would rather live with the LLQ colon pain as opposed to IC type pain. Vicodin would barely touch it. Valium, in moderate doses, helped somewhat and was encouraged in short durations by Stanford. What started all of this, I have no clue. My urologist was getting reading to do a nasty procedure on my prostate too. He even removed a blockage from one of my seminal ducts and said I would feel like a new man. Nope. Some say stress, some say inflammation, some say muscular tension that causes inflammation. No one really knows. I also learned from both Cleveland Clinic and Stanford that the muscular bands in my pelvic floor are over-toned. Kind of like someone who does a lot of kegel exercises and situps, yet I do none of these. In fact, I am NOT supposed to do sit-ups, kegel (I know I am a male) type exercises, etc. I am not loose Pelvic Floor wise, I am too tight. But as I recall my uro workups, my seminal ducts were also inflamed. I am just inflamed and tensed in my entire pelvic region seemingly.
But when I had my original therapy at the Cleveland Clinic years ago, she also told me that I don't drop my pelvic floor when I am supposed to. I can tell that has worsened. In my mind, it feels like my nerves (or signals to tell the various parts of my colon and PFD what to do and when) are failing. Probably not the case, but that is the best way I can describe the sensation, or lack thereof.
The therapy process involves a lot of discipline, a good therapist, and, you have to be able willing to release trigger points inside your pelvic floor and externally. My wife, bless her heart, was even taught how to do the internal work on me where I could not reach. She went through the week long training with me. I might have to recruit her again. You really have to have a good spouse, partner, etc. to assist with this process unless you have access to a trained PT, and there aren't many who can deal with PFD effectively (so I've learned).
So I am a little mad at myself for having abandoned this therapy once my IC symptoms felt somewhat managed. I really need to treat myself better.
I know this all sounds so weird, but I met many other people from around the world with a similar condition, pain, and dysfunction.
Most of the people I still keep in touch with whom I met learning the Stanford Protocol have improved. Some did not because they were later diagnosed with pudendal nerve entrapment and other anatomical issues.
I grow exhausted thinking about all of these, but I have fallen of that wagon and need to get back on.
Does this ever get any easier?
If you want to read more about this, go to http://www.pelvicpainhelp.com/. To quote the protocol, it is very "paradoxical".
Rich
P.S. Joe, thanks for the support as always.
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich,
Thanks for explaining it. I didn't realize there was so much pain involved. That on top of everything you deal with at work and with MC doesn't help. I guess getting back on the wagon with the therapy is the answer. I imagine it's time consuming but 75% improvement is worth it. It seems like you are always on the go at work . . . maybe it's a sign to slow down and get some balance and take time to care for yourself.
Hugs,
Mary Beth
Thanks for explaining it. I didn't realize there was so much pain involved. That on top of everything you deal with at work and with MC doesn't help. I guess getting back on the wagon with the therapy is the answer. I imagine it's time consuming but 75% improvement is worth it. It seems like you are always on the go at work . . . maybe it's a sign to slow down and get some balance and take time to care for yourself.
Hugs,
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer