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Squeek

My life with IBS

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Squeek

My name is Lane and I'm 68.  I have been suffering with IBS since my first child was born, 1972, so 46 years.  Back then I didn't know what it was so I called my gynecologist and he prescribed Valium.  Back then they prescribed Valium for everything.  I started to take it and honestly, I can't remember if it helped or not.  I just know I start reading about valium and that it could become habit forming so I quit.  Now I have not been a regular person in my bathroom constitutionals my entire life so having constipation with IBS was no real awakening moment for me.  But knowing the pain came with not being able to go to the bathroom was difficult on my body.  I continued to have episodes, sometimes light pains and sometimes excruciating.  When they were unbearable I would think, I hope I don't go through this when I'm in my 70 or 80's well I'm almost 70.  I had my second son in 1976 and the stress went really bad.  My Dad was operated on for cancer and my father in law died while I was pregnant.  I had my son in June and we moved in July. Then that Labor day I got sick and had to have my appendix removed.  As that year continued my Grandmother died that October and a young nephew of a real good friend died in a car accident.  To say the least I don't know how I wasn't in bad pain 24 hours of the day.  I don't think I was really diagnosed until the late 1980's.  I don't even think it was through a Dr. that I came to realize I had IBS.  I read a lot, actually, everything, watched shows and talked to anybody that would listen.  I just know I would either eat something or be really nervous about something and the pain would come.  I would fill up with gas, the pain would spasm on and off and go to my rectum, to the point I couldn't sit, stand or anything, it hurt so bad.  I tried milk to finally find it would make them worse.  I went to hot tea and it would help a little.   My Dr. finally prescribed me Levsin.  It helped to a degree but when I would get the pains the pain going into my rectum was awful.  I take Levsin every day and in the 1990's found if I went into my pains, if I used a suppository to help with the lower constipation I didn't get the pain in the rectum.  So my regiment was pain, Levsin, hot tea, heating pad, suppository and pain gone after I would go.  I found certain foods would trigger the pain, and of course stress.  But the certain foods would not all the time trigger an attack.   The Levsin was working and then I went on Medicare and they wouldn't cover it.  I asked the Dr, for something else so he put me on Dysiclamine (Bentel). It gave me diarrhea.  So guess what,  I'm having to pay for Levsin out of pocket, but it helps.  I also changed to Lactaid milk, because I found IBS runs along with Lactose intolerance. So I keep trudging along and in the midst of a recurring episode that has lasted for 3 days.  I'm tired and weak and probably will be going on the BRAT diet for a couple days.   This is my story. - Squeek

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Jeffrey Roberts

Dear Squeek.

Thank you for sharing your story. I don't know when you last saw a doctor about this. There are several constipation medications now available that may ease your symptoms better than Levsin.

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Becka

I’ve always been very scared about how my IBS will only get worse as I get older. My condition is already extremely limiting and very dangerous as it is. I’ve even given myself a concussion from fainting due to low blood sugar because I couldn’t keep anything down. Aging with this condition is honestly what scares me and my SO the most. It’s already hard to do things day to day. If it gets worse as I get older I don’t know how I’m going to be able to work at all.

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scienceguy

My suggestion is to maintain an experimental attitude and to read a lot. Some of the best medical advice I've ever found was on forums like this. I would add one comment to what Jeffrey wrote about there being good alternatives to Levsin. My mother grew up in a household where people were scared to death of dying from an intestinal blockage. Apparently, this was common prior to 1900, and my mother's mother, and her mother's mother, instilled this fear in their children. They were taught that a bowel movement every day was absolutely necessary, and they would freak out if a day went by without a BM. IOW, they were taught to distrust their body's ability to function naturally. Consequently, they constantly took laxatives or enemas to prevent a potential blockage. When my brothers and sisters and I grew up, we heard much more about regular BM's than we were ever interested in hearing, and my mother constantly talked about the state of her digestive system. Her greatest fear in life was dying from an intestinal blockage. Ironically, that's what she eventually died from at the age of 98! I was one of her primary caregivers and her story should be shared with anyone interested in this issue. At the age of 96 or 97 she was prescribed Miralax by her physician because she was convinced that her other laxatives were not working well enough. The Miralax seemed to work for about a year, and then she complained that it wasn't functioning in the way that she thought it should. At about 97 and a half, she began to have explosive diarrhea. Not knowing any better, her caregivers and I gave her Immodium to try to prevent this, and this was the worst thing that we could have done. Later we learned what was really happening. When people take Miralax, they should drink lots of water--much more than usual. My mother did not like drinking water, and she was gradually becoming impacted (her absolute greatest fear). The explosive diarrhea was her body's attempt to bypass the impaction. She eventually became so impacted that her lower abdomen swelled and blocked her ureter, preventing urination. We took her to the hospital where they immediately catheterized her and took X-rays. The doctor came and said to me, "Your mother's problem is that she's full of sh**! You can't make this stuff up!  It was horrifying but also humorous at the same time. He said that her entire intestinal tract was packed solid, and he asked how much water she normally drank. I told him that she hated to drink water. He said, "Well, that's the problem. If someone takes a product like Miralax, they need to drink lots more water than usual." The doctor thought that they could eventually get her cleaned out, but that it would take some time. She turned 98 in the hospital. She was already frail, and she refused to eat the hospital food, and within three days she died--probably due to her refusal to eat. After learning what had happened to her, I began telling anyone interested in this issue about the dangers of laxatives like Miralax if water intake isn't increased. As a side note, I never had any issues with constipation until the age of 40, when, for reasons that are obvious now, I experienced a bout of it. I went to my doctor and he said, "The formula is really simple--water, exercise, and fiber. If you exercise regularly, drink plenty of water, and eat a reasonable amount of fiber, you'll never have to worry about constipation." Except for people with IBS-C, he was correct. Resolving IBS-C obviously requires a few other things.  

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