Posted 3/30/2008 11:47 PM (GMT -6)
I just want you to know that I am a lot like you. I have had severe post-infectious IBS since Oct. 2004. Like you, the doctors say mine is so severe. I have pretty much constant pain and sometimes it gets so bad I almost pass out. I have been hospitalized so many times I can't recall now and the emergency room visits are too numerous to count. I have had so many tests and most of them were normal. Occassionally I have had elevated lab tests including pancreatic enzymes, but then that checked out to be not pancreatitis according to the doctors. I have severe pain in my upper middle abdomen as well as my upper right abdomen sometimes alternating - it is always in the same places. I probably have adhesions as well, because I had 2 surgeries for endometriosis, a c-section, and a hysterectomy and my gallbladder removed. Everytime except for my c-section I had lysis of adhesions and it was my first surgery. I have many symptoms of other inflammatory bowel diseases like uc and chron's, but no bleeding. It has taken many years to get pain medicine that works and I still have pain, but these meds help me to manage the pain at home without ending up in the ER. I am on a fentanyl patch and I take oxycodone for breakthru pain. I also take cymbalta and have numerous meds I take if needed. My doctor also told me that ibs and abuse are related and ask me all those questions, thank goodness I have never been abused. The specialist I see is very well known and teaches other doctors all over the world about IBS. He also is the doctor over a well know medical book under the Gastrointestinal part. He has helped me a lot, but it was my primary doctor who infact gave me my pain medicines, because he sees my regularly and knows I need it. My specialist doesn't like to give narcotics for IBS, because they do make you constipated and make the symptoms of IBS worse. However, in my case I can't stay out of the emergency room without them and I mean it took 6mg of Dilaudid and phenergan and antispasm meds IV or IM last visit. Since being on these medicines I haven't had to go to the emergency room. I went to a pain clinic and was so excited, I thought finally I would get some help, but that is when I was told there was no such thing as IBS, it is all in my head and basically he told me I was crazy and sent me away while I was crying so hard I couldn't even talk. He was a jerk. It made my primary physician so angry. That is when he increased my pain meds from darvocett to these as the darvocett just didn't help anymore. My abdomen has been so distended in the past with or without bowel movements only to say it is IBS, because they can't find anything elese and the pain was so bad I thought I would die. The doctors thought I had an ileus as one time, but I didn't. I eventually got my bowels going again, because they would not move for nothing. That has happened on more than one occassion. Like you my life has changed dramatically since developing IBS and it happened very suddenly. I have had to apply for disability, because I can't work anymore. Some days I have a hard time doing anything even basic things like taking a bath and cleaning my house. I have occassional exceptionally good days, but they are very rare. My doctor put me out of work permanently because my condition is so severe and when I try to work, I get very depressed and stressed out because of the emotional turmoil it puts me through with the guilt of being out of work so much. Working just makes me worse. Also, I know what you mean about driving down the highway and trying to get to a bathroom - oh the pain!!!!! I have also had many embarrassing moments as well. I also have IBS-D and IBS-C - lately it is the latter, even though I still get the urgency and the diarrhea as well. It is difficult to explain, but as you know, it is horrible and like you it is to the most extreme and very difficult for my doctors to treat. I have horrible nausea as well and take phenergan for that. Initially I lost over 10 pounds in less than a week. Later I continued to loose weight as well. Now, I have gained since being on lots of certain medicines and not being very active and sleeping a lot, but recently I have lost about 10-15 pounds, because while my daughter was having so much trouble with her pregnancy and being in the hospital so much I had to take care of her as best I could, then she had the baby and she developed a wound infection and had to be hospitalized for 5 days, when she got out the baby went in with high fever ended up being renal reflux. Anyway, I did a whole lot of running to and from hospital and taking care of baby and lost quite a bit from all that and now I have kept it off. I am size 8 now. I have clothes in my closet for size 6 to size 14 and when my abdomen swells the most I am in size 14 and I am miserable from the distention and it really hurts. I also have lots of trouble sleeping, fibromyalgia, depression, anxiety, post-traumatic stress disorder, GERD, migraines, sacroillitis, frequent sinus infections, pinched nerve (sciatica causing pain down right leg and buttocks when flares), I had endometriosis, ovarian cysts, polyps in uterus for many years and a couple of surgeries until a total hysterectomy and now I have to take hormones. I have also had my gall-bladder removed in 2004 and had a c-section in 1990. My cousin has this IBS really bad as well and is a lot like me - she is in her 50's. I am 38. Another one of my cousins has IBS, but not as severe as ours and no pain. My older cousin also had to go on disability for her IBS as well and she is someone I can talk to that is close by and understands my situation very well. I do have pretty good support from my family members most of the time, but occassionally my husband gets overwhelmed with it and isn't as understanding I like for him to be, but he has so much on him right now especially that it is no wonder. Otherwise, he is pretty good. I will talk with you anytime you like, I truely do understand about the IBS severe pain and its severe complications and how it effects daily life. I hope your physician will end up helping you get to the bottom of it. I use to just know something elese was wrong and sometimes I still wonder, but not as often as I use to - I just know that my IBS is very, very severe and complicated and until they find something elese the dx of IBS will just have to do.