Hi there. I am so glad to have found this site. It's so nice to meet all of you and even though I have only read a few pages, I feel like I have so much in common with all of you. I will apologize in advance since I have a trendency to ramble, so please bear with me.
I'm not sure where to begin, other than starting at the beginning of my symptoms which was 30 years ago. My mother, grandmother, great-grandmother, and probably great-great-grandmother all had undiagnosed stomache problems during their lives. All of them were told they were crazy and it was in their heads. In high school, I started having a lot of stomache problems. A diagnosis of Crohn's was tossed around at that time, but never confirmed. I was also told it was stress and psychological or maybe just IBS. Since that time I have had digestive issues on and off, but mostly on. I have had multiple symtoms, seen multiple doctors, and no solid diagnosis other than the IBS. I have taken antidepressants since 1995. I can also identify with the gyno issues. I always had horrible diarhea with my periods. During my first pregnancy, I had toxemia, which affects the kidneys. Ended up having C-sections with both pregnancies. When my first daughter was about a year old, I ended up back at the GI. All sorts of tests, I was given strong paid meds and sent on my way. For years I went back and forth between the gyno and GI. Is it gynocological, or is it digestive? No one knew for sure. In 2006 I ended up with gallstones and had an emergency surgery to remove my gallbladder. In 2008, had a hysterectomy due to so much monthly pain and supposed fibroids. In 2010, had 1 ovary removed due to a huge tumor. Each time I was told I had a lot of adhesions from previous surgeries. Maybe this was causing my stomache pains and diahrea. After all, I was told I had a lot of scar tissue on my bladder, colon and intestines from the 2 C-sections. I also started having a lot of respiratory problems around 15-20 years ago and ended up with asthma, which I was told was being caused by reflux which I had also ended up with.
Fast foward to November last year. While away for a long weekend, the entire family came down with a stomache virus. And I happened to get mine on my birthday.
Well, one thing about my stomache problems is that I always have diahrea, but never really throw up. In fact, at age 46, I can count on 1 hand, the number of times I have thrown up in my life since being an infant. This happened to be one of those times. For some reason, I rarely get the stomache viruses. Neither does my mom. But this time I did, and it included extremely severe diahrea (similar to the colonoscopy prep) and throwing up. And that seemed to have triggered something in my system. Although a few months before that, I started having some lightheadedness and dizzyness, and strange tingling feelings in my forearms. The diahrea from the virus never really went away. Then it just kept getting worse and wouldn't let up. The pain and diahrea were similar to what I had been dealing with for years. But instead of being several times a week and somewhat controlable with the otc stuff, it rapidly became serveral times a day and the otc stuff was having no effect at all. By Christmas I had lost 20 pounds, which was really amazing since I have been trying to lose weight since my 2nd daughter was born 12 years ago, and had been gradually gaining a few pounds each year since. I had no appetite, nausea, severe diahrea all day long and pretty much everything went right through me within minutes, sometimes seconds. I also had extreme fatigue, more than normal, to the point I could barely get out of bed and was very weak and in so much pain. I missed quite a bit of work due to being so tired, and spending so much time in the bathroom. My GP tried a few things and then finally put me on Welchol powder for 2 weeks, which he said helps with chronic diahrea. Yuck. Even though it did seem to start helping a bit, it was disgusting. It ended up actually making me constipated and giving me a lot of pain. But as soon as I stopped taking it, right away the diahrea comes back, even worse than before. So back on the Welchol. But this time he gives me tables. Yay. The dosage is up to 6 per day, so he says try taking a little less and see how many works best. Ok, so it's not perfect and causes stomache cramps and tons of gas, but way better than the horrible diahrea several times a day. Meanwhile, off to a new GI. He says, so if the meds are helping, then what is the problem? Hello? Oh, I forgot to mention, that my bp was also rising rapidly from my normal 120/80 at a checkup in October, to averaging around 165/90 by mid March. On the day I see the GI it was at 180. He almost sends me to the ER, but it came back down to about 165 before I left his office. Anyway, I say, what is the problem? Well I still can hardly work. I sleep all the time. I am losing weight and still can't hardly eat anything and have no energy at all. And well, my bp was normal 5 months earlier. And even with daily med, I still had reflux. So he says, ok, lets do more stool samples, blood tests, a colonoscopy and endoscopy. He was thinking maybe eschemic colitis because of the bp rising so fast, but says let's rule out everything else first.
So stool and blood mostly normal, except no vitamin D, I am totally deficient. So he says take vitamin D, about 5000 iu per day. Regular dose is 400 iu per day. Capsules didn't do much because I wasn't able to absorb it well. I finally found some drops that I stick under my tounge twice per day, and felt a huge difference within about 3 weeks! My energy and fatique is so much better. Still not what it used to be, but at least I can function again and work a normal full day. I am up to about 7500-10000 iu per day. Oh, the tingling in my arms was apparently bone pain from the vitamin D deficiency. I haven't felt that in a couple of months either.
So colonoscopy looks fine and endoscopy shows a hiatal hernia, the reason for still having reflux even with meds. So finally the biopsy comes back from the colonoscopy. So he says there was no damage consistent with CD, but there was still irritation and inflamation, just not the ulcers and damage. Bloodwork ruled out Celiac disease. So he says I have something called Bile Acid Malabsorption. The test used to confirm it is not available in the USA. But he says based on the symptoms and the fact that the med I was given seems to be helping, is enough to diagnose Bile Acid Malabsorption, or BAM. And he says it could be connected to no gallbladder. He says I will have to take the Welchol and Vitamin D for the rest of my life since the malabsorption is chronic and there is no cure. Since taking the Vitamin D my bp actually has come down quite a bit and is now in the 150s/90s, instead of 165 or higher.
The little information I was able to find about BAM says there is not a lot of research on it and has only recently been recognized as a disease. It has all the same symptoms as CD and Celiac. There is not very much information out there. My GI says it's maybe caused in a very small % of people with gallbladder being removed. But some of what I have read seems to suggest it could actually cause the gallstones. Some of my friends that have had CD for years told me they also have that, which the research suggested that it could be cause by surgery to remove damaged parts of the intestines. It also suggests that some with CD might actually just have BAM and not CD. Hmmm. It makes me wonder if maybe the BAM is just and early sign of CD.
One of my CD friends also takes Welchol to help with the diarhea. It's far from perfect and has its own side effects such as cramping, pain and gas. But its still way better than the severe diarhea.
I got my supposed diagnosis in early May, but I still feel that there is more to it and CD could still be eventual. I have some good days and still way too many bad days. I am still trying to figure out how to cope with it and figure out what works best. I have tried taking the meds at different times of the day and so far that doesn't seem to make enough of a difference. Although I can tell if I go a little too long without taking it, even if its only a few hours. I am also still trying to figure out what triggers my bad days. Nothing conclusive so far. I have to drink a ton of water or I get dehydrated from the malabsorption. The dizzy and lightheadedness was apparently caused by dehydration. And I can tell if I go for more than just a couple hours without drinking any water. I do seem to do better if I am able to eat small snacks constantly throughout the day so there is something in my system for the bile acids since there is a constant flow. If my stomache is too empty, then the bile acids go right through and the diarhea tries to start up again, even with the meds.
Not sure if my diagnosis will be able to help anyone else. I hope it will give some of you something to ask your GP or GI about. But it will be nice to talk to some people that have gone through most of the same symptoms as me. It has been a long road to get to this point. The last 6 months has been pretty bad and I am trying to come to terms with this being for the rest of my life and having to change my lifestyle to work around it. I am so sick and tired of feeling sick and tired. But I am thankful for the days that I have that are good days now.
