Remember when you were little and your mom would give you desert first if you had a bad day or needed to get a shot? Well I'm using that little trick in this blog. I'm giving you desert first. Cute before Crass if you will....
Cute: I awake this morning around 5:00am to go potty and I notice my son is downstairs, so of course I go downstairs to see why and check on him. I asked him why he was up so early to which he replied... he woke up early to see the sunrise. WOW! What a beautiful thing. What an amazing reminder to cherish and relish in the little miracles of beauty life brings...from my 11 year old. WOW.
Crass: Okay - Disclaimer and warning - I am going to the TMI-zone. We are talking bowel issues here, so if you want to leave, now is the time to exit, if not..I carry on.
As you may know, The Big S causes many GI issues. Most people think of the esophageal dysmotility when they think GI and Sclero, but it also affects your bowels. Just like in the esophagus, the peristalsis is affected in the bowels.
Scleroderma can cause constipation, diarrhea, malabsorption, diminished peristalsis, and bowel incontinence. You lose a lot of what is called the "reflex function" of the gut. Normally, when you eat there is something called gastro-colic response, which is the urge to move your bowels. Your stomach starts to work, your bowels start to chum and move things through, Wala - Poop! But with the Big S a lot of these reflexes are lost early in the illness.
I'm not sure if that is now happening to me. I have always been a pretty regular person so to speak, but this past year I have been having bouts of constipation lasting 2-4 days followed by periods of diarrhea. If it is not diarrhea, I have periods where I am able to empty my bowels but it causes terrible cramps and a lot of pain. Not pain at the rectum as the stool itself is soft (I know, I told you it was TMI) but pain in the lower abdomen that feels almost like your worst menstrual cramps x 1000 or if you are male, perhaps what it felt like if you slipped of your bike and hit the bar. The type of intense localized pain that makes you want to curl up into the fetal position because you are cramping so intensely.
Also during these periods, when I am emptying my bowels I will become so nauseous and at times need to vomit. I am like a Koo Koo Clock on crack - sit down potty, walk to sink to vomit, walk back to potty, walk back to sink to vomit. It's horrible. I'm not sure if I am nauseous due to the intensity of the pain, or from the pseudo obstruction the constipation has caused is now moving causing a spasm. Like in labor when the baby drops and you feel like you are going to be sick..same concept perhaps?
I'm not sure, I just know that it sucks.. and during these times, if I am not trying to empty my bowels, I am on the bed in the C-position with cramps till its time to go potty again. This lovely cycle lasts for about 4 hours or so. Good Times, eh?
Another tid bit for the TMI file is that during those bouts, sessions, periods -whatever we want to call them, my stool becomes green. I have read that this happens with malabsorption or rapid transit of the gut.
I have been fighting some vitamin deficiencies trying to keep my Vit D and Vit B12 levels in the norm. The GI Doc had mentioned malabsorption, but since I am not losing weight, it was dismissed or fell to the wayside while my labs were checked for intrinsic factors (which were normal) so now I am wondering if perhaps the Big S has taken up camp in my colon or small bowel and could be the culprit and perhaps even causing some malabsorption issues. In my head since I theorize everything, it seems plausible as I do have periods where I just feel so weak, which would make sense if I had no real nutrition being absorbed. Hmm. Something to think about I guess.
I did not mention my Koo Koo Clock bouts to the GI doc when I saw him as our discussion was based around my failing vitamin levels at that time. It was discussed that I should have the Ol' Colonoscopy to check my bowels for the Big S, so I guess that's what I will be doing in the near future. I'm a girl who knows how to have a good time!!
I am aware that some people with Sclero will require meds to stimulate the peristalsis, but also read that later in the disorder, the muscle response is lost and the muscle becomes atrophic and fibrotic. Basically - you cannot "drug" the organ into functioning if there is no tissue there to function.
I guess we will see. That is basically what my life has been for the last 3 days since I returned from my overnight. Things are calming down a bit. As I type my cramps are mild and my nausea is in the background, but if I dare go into the water closet, I know there will be hell to pay.
Don't get me wrong. Sometimes things work fine. It is strange. It makes me wonder if it is linked to the inflammatory process of this disease. If it is a GI flare? I have had lung flares? I never knew or realized that you could have a single organ flare with this disease, but perhaps you can. I know that I have felt sooooo incredible tired and achey these past few days. My joints ache like it's my job! My ankles and shoulders hurt so badly I was contemplating taking narcotics....which for me is big. My thumbs were not too happy and neither were my fingers or muscles, maybe it is a flare. Who knows?
I am either Okie Dokie, things go right through me and I have green diarrhea, or I get the Koo Koo Clock conspiracy. I will keep you posted if this is in fact confirmed as Big S territory.
That's it for the TMI - I think I have been intimate enough about myself for the day, so with that I will leave you - hopefully not with a visual, unless it is that of a beautiful sunrise such as the one I shared with my son this morning.
Thanks for reading - and again, if you get this too...please let me know.
Much peace and Love ~