Dear Online Community:

I am writing my entire story, hoping someone can give me some advice or perspective on my situation. I was diagnosed with IBS officially in 2006, though after reflection it seems I was suffering from symptoms since I was a teenager (I am currently 26). Back in 2006 my chief complaint was pain. I would get these pains where my stomach felt like it was completely bloated and full of pressure like a balloon, following by sharp pains. I was prescribed Levsin which typically worked to help the pain. I was also told to take probiotics and fiber, as well as diet changes. I did not adhere to this too well but after quitting my job (which was a source of major stress) I noticed the pains disappear with time. After that I thought I was better, though I still dealt with irregular bowel movements, but since I have a high threshold for discomfort I was able to put up with this. I was actually coping well, eating regular meals of meat, veggies, etc., had some dairy, even coffee. But then my symptoms started taking a turn for the worse and my nausea got so bad I couldn’t even eat anymore. I would wake up with nausea everyday but was able to fight it and live with it. I smoked in the evenings after work so I could eat. I have very sensitive taste/ smell issues where I can get sick of the taste of something after a few bites, and if I eat more I will start gagging even though there is nothing wrong with the food. The same thing can happen with smell. The worse my nausea is the worse these symptoms get. This I have dealt with since childhood – but then I was just considered fussy, but I always knew it was more than that.

Around the end of September I sought medical help because I was struggling to eat and the symptoms just kept getting worse. I had lost about 10 pounds at that point, going from about 115-120, down to 105 (I am 5’2”). From that point forward my symptoms kept fluctuating and I went down to 98 lbs. (undressed I was 95 lbs.). I was very depressed due to the health issues as well. Along with this I do suffer from GAD, and was dealing with some stressful life situations (but that is always the case in my life). Particularly I was going through a divorce which was finalized around October. I had been in therapy (which started as marriage counseling) and was at a point in therapy where I was growing much stronger and letting go of dysfunctional relationships with my parents and other family members. I was also finally processing through trauma I experienced throughout my childhood, etc. Along with this I was dealing with a great deal of stress at work due to too much work and difficult co-workers. My therapist felt that the culmination of all these stressors triggered my IBS symptoms. The biggest issues in her eyes was that I was finally letting go of these bad relationships but I was also dealing with the stress of this at the same time. I saw a GI specialist who did a colonoscopy, endoscopy, hydrogen breath test, and blood work. In the end he ruled out worse diseases and said I was dealing with a severe IBS flare up. The breath test came back positive for bacteria, and I was prescribed Xifaxin (3 pills a day for 2 weeks). After I took the antibiotics I started to feel better, and I also took 1.5 months off through FMLA. I had a low level STD plan and an ER fund so that held me over, but I had to go back to work because I was running low on cash. I also was severely depressed from sitting at home for all that time and wanted to get back into a routine. At that time I was at about 103 lbs. and things were looking up. But then things went back down hill again. Now I was having only diarrhea, completely watery movements every single time I went. This went on for a whole month, in which time I was prescribed Zofran for the nausea (I had to take it twice a day), Prevacid, Celexa, Fiber, Probiotics, and a multi vitamin. I was eating a bland diet, but no matter what my movements were the same. I started seeing a new GI, one who was better at helping me manage my symptoms. At that point I went for a pelvic/ abdomen CT scan and more blood work. It all came back fine, and it still seemed IBS was the only culprit. Finally I was prescribed Bentyl ( 10 mg. pills 3 times per day before meals). Due to my weight loss I was put on this lower dose. At that point I was dealing with severe fatigue, nausea, diarrhea that sometimes goes to constipation with anal fissures, hemorrhoids at times, and reflux. After a month of so on Bentyl I did see the benefits, though the side effects were hard to deal with. The Bentyl makes me feel even more out of it than I already felt, spacey and just empty headed, and drowsy. I would also feel very dizzy like I was going to faint. I would have to stop and rest against buildings to feel ok. I even ended up fainting when I was standing for too long. This is due to my blood pressure dropping when I stand for a while (I fainted back in 2008 and the doctor ran tests to come to this conclusion). This issue seemed to get worse as my health has been deteriorating. But despite all this Bentyl allowed me to eat more different types of foods and saved me from the bland diet I was on. There have even been a couple times where I ate a slice of pizza, a cheesesteak, or even a bit of coffee because it slows my system down…and unlike before I wouldn’t run straight to the toilet after eating such things. Of course I took a pill for lactose intolerance to allow me to eat the dairy. But the pain of eating such foods was still there, but I wouldn’t throw up so I felt very happy about that. But it did not help me to eat more. I was still very picky about what I could eat, and only could handle small amounts. I tried to force feed myself as I was told to do by the dietician from the start, but it was impossible with how I felt. I could only eat a large meal in the evening after a day of taking pills and smoking. I felt I was gaining weight since I was eating more fat, and also completed a stool test during this time. I returned to the GI to find out the stool test came back fine and that I had actually lost another 2 lbs. (I was 98 lbs. the week before and now was 96 lbs.). I was very discouraged by this news. The GI said that all these symptoms were not normal for IBS and that there was definitely something more going on but they did not know what. She felt I was dealing with a motility issue as well. Also she was concerned I was dealing with mal-absorption, but the doctor who did my first endoscopy did not do a biopsy of my upper area and therefore she could not know for sure. She prescribed me enzymes (Protease) to take before each meal to help me break down my food, which she felt I was not doing. She said I would have to do another endoscopy in 6 weeks if the enzymes did not help me to feel better. At this point she said my body was beyond science, but she felt that I had several different issues that were causing all my problems, one being motility problems.

I have been out of work on and off for 6 months now, I have officially lost my job protection through FMLA and they are filling my position. I am on Leave of Absence now and will be covered through my work for up to a year, at which point I will lose all my benefits. Along with that STD has not even sent me my money yet so I am in a bad place of living off credit cards and trying to conserve the small amount of cash I have left. Though I have far less movements now due to the Bentyl, every time I go it’s diarrhea. I also have a lot of gas and burping (one time I even shit myself thinking the gas was just gas but it was diarrhea). The worst symptom right now is the fatigue. I never feel rested after sleeping and some days I sleep practically all day but each time I wake up I feel so sleepy and tired. Whenever I do try to go out and do things I feel so worn out for several days. I used to be a very active person (working, taking classes, volunteering, socializing) so this is not at all normal for me. And mentally I’m having trouble concentrating, memory problems, and it takes a long time to get anything done for me (which makes it impossible to hold a job…I barely get my daily to do’s done). I am dependent on Zofran to deal with nausea, and all my other meds to make me function at this low level. I keep thinking I’ll be better in a month, but the month passes and I am the same. I’m fearful of what will happen to me when all my benefits run out and I have no money.

I am sharing my story hoping someone can give me some advice. I am scared, stressed, and depressed. Any advice would be helpful. I would love to hear from others going through the same or who have gone through the same. I don’t know why this has happened to me and why I have been sick for so long. Thanks for listening.

Sincerely,

By: thunia23 (Preeti P.)