Bladder and Bowel Problems
or how I survived my colonoscopy
by Shelley Peterman Schwarz
I must have a flu bug because last night I had diarrhea and lost bowel control. I couldn't get to the toilet fast enough. I was mortified ... practically paralyzed in disbelief.
It's been years since I've had diarrhea and when I did, I was still able to manage my personal care independently. This time it was different.... Hubby David was wonderful and patiently helped me get cleaned up. (Boy, when we recited our marriage vows, for better or for worse, in sickness and in health, who knew how those words would come back to us!)
I took a shower and got into bed only to have the problems start all over again. Suffice it to say, it was not a pleasant evening. We haven't done laundry like that since the kids were little. Oh, how I hate this illness!!!!! The indignities are beyond description.
As much as I don't want to admit it, I must face the fact that what I thought was the flu, wasn't. I'm still having problems. Even though the uncontrollable explosions of diarrhea are gone, whenever I feel "the urge" I must get to the bathroom immediately... several times a day. And sometimes I don't make it.
I can't believe this is happening. I've never had this "urgency" problem before. In fact, just the opposite was true. For as long as I can remember, constipation has been my problem. I'm beside myself. What am I going to do if this is going to be an on-going problem?
Have I mentioned how much I hate this illness?
I've been trying to have people around me all the time so if I have to use the commode I've got the help I need. If I'm going to be alone for any length of time, I get in bed because for some reason I rarely have a problem when I'm lying down.
What a waste... spending time in bed in the middle of the day.
I'm trying to eat more fiber, drink more water and watch my fat intake... Maybe this problem occurred because I've eaten foods that were too high in fat and that may have irritated my digestive track. Someone told me yogurt was good for intestinal problems so I added it to my diet.
My problem could also be due to inactivity or perhaps it's related to menopause. I know I'm trying to find an explanation for all these problems. so I can avoid going to the doctor... The thought of facing another MS-related problem is just too depressing.
Can you tell I don't want this problem to be MS rearing its ugly head? Or is it just denial?
Just when I think I've gotten this bowel problem under control, I have a BAD day. I know I've put it off as long as I can, I have to call the doctor.
I can't believe it. The doctor told me he thought the problem was constipation and x-rays confirmed his diagnosis. After I told him all the things I had tried, he felt it was time for me to consult a gastroenterologist, Dr. G.
This is getting scary. What if something else is seriously wrong with me? Funny, I may be relieved that it's just MS.
I'm having a colonoscopy tomorrow and I'm scared to death. They're going to sedate me and use a scope to exam my colon/ large intestines. It's not the test that worries me because I'll be sedated. It's the preparation for the test that I'm concerned about. Plus, I'm putting myself in the hands of people I don't know and who don't know me.
To prepare for the test, I've only been able to drink clear liquids. Tomorrow when I get to the hospital, I'll have to drink a gallon of this special liquid that will finish cleaning out my system. Once I start drinking the liquid, it should take 4-6 hours until I'm ready for the doctor to exam my colon. In reality, it means I'll be sitting on a toilet for quite a while. I'm afraid I can't make it on liquids for 30 hours before starting the prep at the hospital. By the time I arrive for my 11:00 a.m. appointment, I won't be able to hold my head up. If I don't eat regularly, my body just falls apart. I'm like a limp noodle.
Making the decision to go through with the test was not easy. Last night, I cried my eyes out. All the frustrations and repressed memories of past medical procedures, condescending, paternalistic doctors, and loss of control came pouring out.
By the time the tears stopped, I had decided not to go through with the test. I just couldn't subject myself to another test. If my medical history was any indication, "Murphy's Law" (that if anything can go wrong, it will) would be proven right again. I'm not a pessimist by any stretch of the imagination, but you can't argue with the past. My body just doesn't behave like a "normal" person and I don't have any strength, energy or stamina left to be my own advocate or to educate my doctor and his staff about people with MS.
When I called the doctor's office this morning to cancel the colonoscopy, the receptionist put me through to the nurse. She was very kind and encouraged me to come in and tour their beautiful, new, accessible facility. Maybe then I wouldn't be so afraid. As we talked, I told her why I was canceling the test. I needed to know that this test was absolutely necessary. I needed to know if the doctor had any experience with people who had chronic progressive MS. I also didn't think the doctor or his staff realized the level of my disability. Since Dr. G. never examined me, he had no way of knowing that I couldn't move anything but my left hand. (That's what I get for "Gee, but you look so good.") I told the nurse I would have to talk directly with the person who would be assigned to me the day of the test so I could make absolutely sure she knew my limitations.
Nobody realizes how hard it is to put yourself in the hands of healthcare professionals. Past experience has taught me that just because they carry the title doctor, nurse, or nurses aide doesn't mean they know about MS or people with severe physical disabilities. Although they're well intentioned, they rarely realize or plan for the extra time and attention we require. When I was finished, the doctor's nurse validated my concerns... she could understand my apprehension.
I couldn't believe it! Then she promised to bring my questions and concerns to the doctor and call me back.
An hour later, she called. The doctor wanted to talk to me. Yes, he felt the test was necessary and it shouldn't be delayed. The problem had gone on too long to continue to ignore it. No, he didn't realize I was so disabled and his experience with people who had MS was quite limited. Instead of coming in at 11:00 a.m., I could come in at 7:30 a.m. and as soon as I was cleaned out, he would take me next. The nurse who had been assigned to me would call me within the hour so we could discuss any special needs. I was speechless. (Something that rarely happens.) Maybe my medical luck was changing.
When the nurse called, she was wonderful. She told me what to expect and I told her what I would need. She would start an IV. I have no veins. I asked her, "Was there an expert who could find an elusive vein using a pediatric needle?" She assured me that that would be no problem.
When the special liquid started working, I'd probably need to remain on the commode. I was told there were grab bars on the wall. But I can't use wall grab bars. Were there bars/armrests on the toilet? No. Could she get a set of armrests to attach to the commode? She didn't know that such a thing existed. I told her to call the occupational or physical therapy department to see if she could borrow a set from them.
Even with the armrests, I'd need pillows to prop up my body and support my shoulders. I'd also need a footrest to elevate my legs periodically. Since I am unable to transfer myself when I must move, I told the nurse she would probably need to have someone help her lift me. And it would be helpful to have a bed that can be raised up or lowered. If I wear a surgical gown, which snaps up the sleeve, rather than a hospital gown which doesn't, it would be easier to help me change garments should it be necessary.
When we finally hung up, I breathed a little easier ... but I still worried ... Did I sound too demanding, neurotic or controlling?
Well, I did it. I had the test yesterday and there is nothing wrong with me that a "bowel program" won't help. There are several options and/or combination of things we can do to help me avoid the problems I've had in the past few months.
The "prep" and test went off like clockwork. I'm convinced that the reason it did was because I had been my own advocate. The nurse thanked me 2 or 3 times during the day for having the foresight to call prior to being admitted. She was happy that she had had time to prepare for my arrival and to alert the other staff members that she may need their help. In fact, she told me that they were going to keep the detachable arm rests in the department for other patients who may need them.
It's not easy having this frustrating illness. But I refuse to let it control who I am. And as difficult as it is sometimes, I'm not going to succumb. I'm going to rise above the problems and carry on.