Looking back over the years I have figured out that my problem with diarrhea and constipation started for a short time when I was 13. Then it resurfaced when I was 19. At this time I would just either get to school or work and end up with the diarrhea for the first couple of hours in the morning. When I was in school, and feeling the cramps and end up with diarrhea, and could not stay in class, school would send me home. When I got home, I was fine. No more diarrhea. Now these as I have come to call them my attacks lasted on and off for about 3 months, just in the morning hours. Using Pep-to Bismol was the cure way back then.
When I was 19, I ended up with the diarrhea for 3 weeks straight. I tried Pep-to Bismol, Kaeopectate, nothing helped. As I worked at the Hospital I was lucky to run into my Doctor. I told him the problem, and that nothing worked to stop it. He prescribed . Lomotil worked, this is the only medication that would work for me for years. He also scheduled me for a Procto-scope. I was scheduled for a battery of tests. The Procto-scope is an examine where you have to kneel on your knees on the platform on a table. and then lay flat. They tip the table in the air, and the Procto- scope is inserted. It has a light on it and also they can see it on a computer screen. Before you have this test they have to clean you completely out. This time they used bags of warm water inserted by tube in the rectum. It wasn’t painful, but, uncomfortable. Once filled with the water you were suppose to hold it as long as you could and then head for the bathroom. They did this about 10 times. Over the years I have told them when I was cleaned out.
Cause they would just keep filling you up with water again and again. I finally would say enough. The finally test was an upper and lower GI series. The upper you are given around 6 or 7 tiny pills, and then a glass of chalky liquid that they tell you tastes like strawberries. Well know one has ever gotten the strawberry taste down for artificial flavoring. You are told to drink it all. When I start gagging, they say if you throw it up, you will just have to drink more. So I forced myself to keep swallowing, and swallow again if I felt it coming back up. Then they have you lay on the x-ray table where they are able to view on camera (as the liquid was radio active) the pills and liquid as they went down, and take x-rays as they were going down. They view your Gall Bladder, Esophagus, diaphragm, upper intestines, etc. The lower GI (lower intestines) you have to lay on the x-ray table and they insert a tube and fill you up with radio active chalky fluid. After it is inserted they have a bulb with a balloon on it that they expand. So the fluid stays inside.
Then they have you go side to side taking x-rays, then lay flat and more x-rays, after the x-rays are done they remove the bulb and you head for the bathroom. Where you sit for quite sometime. Then you are allowed be taken back to your room but, before you leave they hand you a small container of Milk of Magnesia to take. This is to clean out your system, as the chalky liquid can get hard as a rock in your system. A couple hours after you are back in the hospital room you are once again back and forth to the bathroom. Drinking plenty of fluids helps this process go much faster. They keep you on a liquid diet, Jello, soup, coffee, milk, until the test results come back. When I talked to the Doctor I asked if they found anything, he said No, all the tests were clear. I then asked what do we call this, cause insurance companies want to know, etc. He said it is a Spastic Colon and Nervous Bowel.
I did not have any further problems until after I gave birth to my daughter. The day after I brought her home from the hospital I had severe cramps, I was shaky, and got the sweats. Which really made me panic. I ended up having to go to the bathroom which started normally and ended up as the Diaheria. I called my doctor and he prescribed Combid capsules. I would take 1 in the morning and 1 at night. These seemed to help some. We were in the process of building our first home and it was time to start staining and varnishing. We would go over to the house and by the time we got there I would start with the cramps, sweats and have to go to the bathroom. So as our toilet was not hooked up, we would have to go home. This happened every time we went there. So we finally used one corner of our bedroom and used and empty paint can in case we had to go to the bathroom. As it was just my husband myself we could manage. So this helped with being able to get some work done. Once we moved into the house I would have the attacks as soon as I woke up in the morning. So I started drinking a cup of coffee and would sit in our recliner with my knees up to my chest to get things going, I would start cramping and then sweating). When going to the bathroom everything would start out normal, then get thinner and thinner, there could be some mucus along with the stool, blood in the stool (if the blood is bright red it is current, but if it is dark and more black it has been going on for awhile-when it is dark or red for the matter it doesn’t hurt to contact your doctor) . I always said like snakes or worms, and then at the end was the Diarriha, but not all the time. Once I had gone to the bathroom, I could feel my intestines jumping around. The same with the rectum.
This is when I went to see my doctor and he prescribed tranxene which is generic Librax. It helps stop the spasms in the intestines. This really helped for a while but, then about mid day I would start feeling the panicking and cramping again. Once again back to the doctor. I told him that I could feel the medication wearing off, so he prescribed a nerve pill Librium 10 mg. I was to take that once a day, and take the Librax/Tranxene 7.5 mg. when needed. He also told me to stop eating anything that bothered me. It started with Pork Chops and Pork Roast, I would get severe pain after eating them. I laid down after the Pork Roast and it went away. But, when having the Pork Chops laying down did not work. The doctor on call prescribed a couple of pills and I took 1 which helped the pain go away. I do not recall the name of that pill as that was about 33 years ago. So I ate no more Pork. I tried bacon, and could only eat bacon if all the grease was cooked out of it. It had to be completely crisp. Popcorn, corn, cauliflower, cabbage, coleslaw, sauerkraut, Brussels sprouts, acidity tomatoes, onions, hard boiled eggs, were just a few of the things I know longer could eat. After our second child was born, when I was dieting I found out I know longer could have salads, basically the lettuce. All these foods are foods I had grown up eating and never had a problem with. When I would cook, I made sure that my family still had those food items, just because I couldn’t eat them there was no reason why they shouldn’t. I eventually stopped drinking coffee, or anything hot in the morning. Also had to stop eating watermelon and any other type melon. I did find out that when I have these attacks I should have something on hand that has potassium in it. As having one of these attacks takes potassium out of your system. Taking stool softener’s helps along with Vitamin B Complex.
It got to the point that I would be in pain from the minute I woke up till 6 or 7 p.m. Then I would feel good from that time, so I would stay up all night till maybe 5 a.m. because I would have to be up when the kids woke up, they knew that when Mama wasn’t feeling good to just play nice. I would get them their breakfast and dinner, put them down for their naps, and start making supper. All with having to run back and forth to the bathroom. Once my husband was home he would keep and eye on the kids so I could lay on the couch. It helped laying on my side. As the kids got older they just knew that Mama wasn’t feeling good, so they played quietly. Once they started school, I started sleeping in until I would wake up. As long as I was sleeping I wouldn’t be in pain. Then it started when we were going to go grocery shopping, we would have a whole basket full of groceries, and my husband would have to leave the basket and take me home. I would start sweating, and cramping in the store. Now this grocery store was in the village we lived in. Trying to go to town which was about a 20 minute ride was pure Hell. I would start cramping the minute we hit the road. I finally would just sit silent and close my eyes. Why I have no idea. But, we were able to get to town. The first thing to do when getting in the store was for everyone to check out and find where the bathroom was. This some how made me relax a bit, and if I needed to, then I knew where the bathroom was.
We finally decided to go into farming, and bought our farm, which was closer to town. This I thought would be easier. But, no it wasn’t. I started driving my kids to classes at the college, to help them catch up where they needed. The first summer I would drive them to the college and stay there while they had there classes. Of course scoping out the college for the bathroom. Then I slowly would let myself walk around the inside of the college. Then it was straight back home after classes. The next summer I decided that I was almost to town when I dropped the kids off at the college so, I would try and go into town and do some shopping and then come back to pick up the kids and go home. It seemed that moving to the farm really helped. I grew a huge garden and did all the canning. We had a lot of relatives that would stop in to see the farm and get some veggies. So I was more in contact with people again. I would find out going to visit my mother would bring on one of my attacks, so I made sure that I took my nerve pill and the Librax for the spasms, and I was good to go. Then our son had to go to eye therapy, which I had to take him into town for, because my husband was doing chores in the barn. I became friends with my sons therapist and she encouraged me to come down and visit her with the kids when her son was home for summer vacation. I explained about the spastic colon and nervous bowel. She said we could go out to eat. This was always a problem. I did not eat before I went anywhere, or eat out. She told me she didn’t care if I had the problem, that I could sit on the outside of the booth and if I had to go, I could get out easy. This really helped for someone to understand which made things so much easier for me. Needless to say the kids and I, Gretchen and her son had a wonderful son. I was also getting less attacks. When the school year started my Son wanted to join basketball, so we said yes. Never thinking I might have a problem with it. Well when it was time for the games, we would be in the Gym, and I could feel the panic and cramps starting. I would either take a walk to the bathroom, or start talking to one of the parents sitting near by. This took my mind off of it and after a couple of times I was able to go to games with out worrying but, I always kept my pills with me just in case. I was starting to be able to go more and more places. Which was wonderful.
Since we had moved to the farm, I still had my attacks, sometimes in the middle of the night. I would have severe pain, cramps, and gas. Then I would get the sweats, I would be soaking wet, and would feel my skin and it was cold (cold sweats). My sister suggested that when I was having one of my attacks to put my wrist under cold water. This helped slow down the racing of my heart. These attacks were horrible. They had gotten even worse. It would start with the severe pain and cramps, which would last for hours, then I would finally start going to the bathroom normally, then thinner, and then pure liquid. If I had no cramps for about 10 minutes it was safe to get up off the toilet for awhile. These attacks lasted up to 5 or more hours. I remember we have a cement water holding tank that collects all the rain water from the gutters and stays in this tank. Well while sitting on the toilet while it is raining, and the tank is filling I felt like I was going down with the ship. The floor would get moist, then the rug and I would get the chills. After so many of these attacks during rain storms, I finally got my husband to take out the gutter and cement up the hole where the water entered. This I could actually say was heavenly. I know longer felt like I was going down with the ship.
I had a neighbor visit one day and she was talking about a test she had, and she told me about some problems she was having. Well she proceeded to tell me about her intestinal problems. So we chatted. I told her I just hate it when the pain is there for hours, the bloated feeling, and feeling like your stomach is sticking way out. She told me what she did. She took her hands and massaged her below stomach from right to left, like she was kneading dough. She said this really helps. So I tried it the next time I was having one of my attacks, I was able after awhile to cut my attacks down to about 1 1/2 hours. This was great. I also after my attacks would not eat much. I found out the Cheetos brand Cheetos’s and Ritz crackers where the trick for me. I always had a box or bag next to my chair in the living room. Everyone knew those were Mom’s don’t touch. I also found out from my pharmacist that when the attack starts that I should eat dry toast and drink a glass of water. I always have something to drink by me as I dehydrate during these attacks. By eating the dry toast then drinking water it expands the dry toast in your intestines and helps push things through faster. I keep a pail handy as a few times I have actually thrown up too.
My sister and I had a talk years later and she told me that she thought I almost had a Phobia. I agree, I didn’t know it at the time, but I was either having panic or anxiety attacks along with my attacks when having to go somewhere, which was crippling me from leaving my home, visiting relatives, friends, talking on the phone, etc. It was Hell not only for me, it was also very hard on my husband and children. Me not being able to go to family functions, etc. My husband would always just say I was sick if he he took the kids, while I was at home. He use to insist on staying home, and I started insisting that they go with out me.
As our children got older and involved in sports and other activities. We started going to more and more functions, which made things easier and easier. I eventually stopped taking the nerve pills and Librax pills when I broke my leg. I had to keep my leg up for all but 2 minute out of each hour for 3 months. One day when taking my pills I thought why am I taking these. I have nothing to be nervous about. I slowly weeded myself off of the pills. I keep the prescriptions up to date, and always have some in my person, just in case. Having a job was another hurdle. I had to take the pills in order to get through the first couple of weeks. I would let my employer know about the problem. So if I need to use the bathroom, there would be someone to cover me. This worked out great, until I switched jobs, and became a photographer at a small studio. There was no bathroom in the studio it was 1/2 way across the store. So taking the pills again started. I finally decided after all of these years to try an over the counter product. Imodium Advanced and it worked. I was now able to take an over the counter medication that would help stop the Daria. So along with the Librium, Librax and the Imodium advanced they are always kept in my purse just in case.
I still have the attacks and have gone through more Upper and Lower GI tests, proctoscopes over the years. And have also had colonoscopy’s (they give you pills to clean you out at home, and then you take one before you go in for your test, they insert a needle in your hand, and inject something to put you to sleep, you are out before and during the test). Still nothing shows up on them. So I take one day at a time. Over the years I became a 4-H volunteer, and then Main Leader for our 4-H club, was secretary of the 4-H leaders board in our county, have taken 4-H trips for leaders to different states either flying or driving. Have traveled with a friend for a year as they preformed, I even got to travel to North Carolina and Dallas, Texas. by vehicle, and didn’t have an attack. The more I forced myself to do things the less attacks I had. Although now when I do get an attack they can be very severe. After an attack I am totally drained, I get the chills and go to bed and can sleep anywhere from a few hours to 15 hours straight. I am totally wiped out for days. Sometimes the next day I will have another attack. They will go in streaks to one at a time to having them everyday for a week or two. My husband always makes sure he picks up the banana’s for me, and either my crackers or my cheetos. He also just let’s me sleep. I know he will check up on me cause once in a while I will feel him put his hand on my forehead. He makes sure when I have the chills that he covers me up with blankets and quilts. I can lay under 3 blankets and 2 quilts and still be cold sometimes, so I will get up and put on my big fuzzy long bathrobe and some socks then it is back under the stack of covers for me.
I have also found out over the years that when I would be talking to my husband or the kids and all of a sudden started being crabby or yelling that this was a sign of one of my attacks coming on. I also know when I feel a certain pain in my intestines that in a day or two I will be having an attack. Over the years I have done allot of apologizing ahead of time, and after. When I am having one of my attacks I don’t want to be talked to or touched but, I do want someone in the house if it is possible. It is not always possible so I have learned to walk out on my porch and take deep breaths while letting my stomach and intestines relax and stretch out. This has helped get me through the attacks and they don’t last as long. I also have gone from sever pain to sometimes no pain at all, but just straight liquid Daria, which then will turn solid after that, to liquid, etc. From one attack to another, I never know what the next one will be like. All I know is after the first bowel movement and everyone after that I thank God for getting me through it.
One of the main things to really help you with this condition, is to find people that understand and don’t judge you. My husband understanding and my friends has helped so much. My children use to understand, but since they left home, I think they forgot, so now if I have a bout with diarrhea , they get angry instead realizing that this has been a life long condition there mother has had. My older sister ended up with a chemical imbalance years ago, where she was unable to keep anything down, or if she kept it down it came out the other end, and she couldn’t go anywhere. She once said to me on the phone, I now know what Mary has been going through. That meant the world to me, someone finally understood. People have a tendency to judge people when they have conditions like this. It is too bad, because it is not something we are fully in control of. We can cut out all the foods we can’t eat, etc. But, the problem is always going to be there. Now it a can be months before an attack, and then it goes in streaks. My pharmacist over 30 years ago told me to watch the weather. He said that when it is rainy and damp out moisture is getting in your system and you will have problems. He also said watch the humidity, even though we are sweating during humid weather, humidity is still putting moisture back in your body. I started keep track of when I would have an attack. I would have 3 weeks in fall and 3 weeks in spring that were really bad. Two years ago when we had so much humid weather in Wisconsin, I had been sick the whole summer. The Imodium advanced worked. But, then on days that I had off, I didn’t need to take the Imodium advanced, and I would have a twice as bad attack, because I had to take Imodium advanced so I could work, instead of being able to let it run its course.
For anyone who has Colitis, IBS, Irritable Bowel Syndrome, Crone’s, etc. all I can say is try not to let it take over your life (mine has never been diagnosed as IBS, but, I have been reading on the condition, and find that Spastic Colon and Nervous Bowel is what they called it before they started diagnosing it as IBS), it almost controlled my life. I am thankful to my husband, family and friends for being understanding. They are the ones who helped me have a life once again.
One of the things to look for when you have one of these conditions, is to look at first what you have been eating, what has been going on in your life, etc. Then look at family history. My Grandmother had some sort of problem. My Aunt has had problems all her life. My younger sister has IBS. It can be hereditary in some cases. My Dad had diarrhea every day of his life as an adult and died at age 57 from a perforated lower intestine/peritonitis (I asked my doctor about it and he said it was a possibility that my Dad could have had Diverticulitis and that is what would have cause a weakness in the lining of his lower intestine). Knowing these few things can help in finding a diagnosis. You can either be completely miserable with the condition, or try to make the most out of your life with it.
