This is the most oddly random improvement and I'm not sure how to explain it. After all that doctor mess in Dec. I somehow got it into my head that I should go back on the Depo-Provera shot. I noticed that my gastoparesis got a lot worse around my cycles and also mid-cycle. I thought maybe there was a hormone trigger involved and perhaps calming the hormones down would fix the stomach.
Well lo and behold! I got my injection on Dec. 27 and my stomach calmed down IMMEDIATELY. I have not had a bout of diarrhea since! I have an appetite again! Everything is working again and I have even gained a couple pounds back.
The only thing I have figured out is perhaps I was suffering from some kind of hormone imbalance such as PCOS. I have suspected this for YEARS (the infertility being one of my main clues) but the doctors in my town were really not good at diagnosing that sort of thing. So I just sort of ignored it. But apparently PCOS does cause your gallbladder to go haywire as well as other digestive probs. Now I still have the low blood pressure which I'll probably ALWAYS have but at least the hormones aren't aggravating it. I feel so much better.
I'm able to eat sugar again, small amounts of tomato and even small amounts of peppers. (Those are not the best but I just love the flavor too much.)
Finally I don't feel like I'm starving away to nothing :-) Wooooo!
Another reason I wanted to try it was to see if it would decrease my migraines. The jury's still out on that one. I have noticed a bit more hypermobility in some of my joints but I'm not sure if the migraines are better or the same. To be continued. . .
Wednesday, January 18, 2012
Good news for a change
I got to see the famous EDS specialist Dr. Brad Tinkle! I had made this appointment several months ago not sure if I'd even be able to make it down. But I did! Luckily it didn't snow that day. Not a trace of snow that day. It was kind of a tiring trip but well worth it and I would recommend him highly! My hubby had the bright idea (!) of leaving early in the morning so we wouldn't have to spend the night in Cincy. Good idea in theory but bad in reality because it was way too exhausting. We got there just fine with plenty of time to spare, but Dr. T. was running behind so we spent a good hour waiting before we even saw anyone.
When we finally got in it was for me to be weighed/blood pressure taken, etc. Then I saw another nurse who asked me about meds and some of my medical history. Then another girl came in (a student I think) who asked me more in-depth medical history questions such as if I've had any hernias, asthma, growing pains, that sort of thing. She had many questions to go through.
Finally we got to see Dr. Tinkle. I didn't tell him a whole lot because I wanted to have an unbiased opinion. He looked at my feet and noticed they over-pronate. I said, "Yeah that's what Dr. Grahame said, too." Dr. T. said, "THE Dr. Grahame???!" That's when it came out that I'd already been to the EDNF conference and was on the support groups, etc. But like I said, I wanted an unbiased opinion.
He said right away that I DO HAVE EDS HYPERMOBILITY TYPE. This was a relief for me because it confirmed what Dr. Lavallee and Dr. Grahame had said earlier. But, I never had an official diagnosis on paper and that was why I was there! I wanted to confirm the type, and get the diagnosis on paper so I could show my docs at home. Dr. T. said I need to get some inserts for my shoes to stabilize my ankles (Dr. G. had also said this but I never got around to it...)
Dr. T. said some of my migraines may be due to TMJ probs. I told him I do have a splint I wear every few nights, but when I'm having spasms in my neck it is uncomfortable to wear it. He said that what I really need is PT for my TMJ. I never got that - just a splint. So he researched a PT for me to see up here that can help me with that.
He also had some medication recommendations he wrote up for my doctor in the same letter explaining my EDS diagnosis.
The weirdest/most interesting thing he said was that my gastroparesis is caused by my POTS and low blood pressure! So the only things I can do are continue to eat the small frequent meals, avoid eating cold things or too much fat/fiber, drink plenty of water and eat plenty of salt. My gastroenterologist was right in a way. But wrong in how he gave me NO insight!
He also recommended I get his book (not so he could become rich - he noted that he still drives a Hyundai). He said it was for my own info. and for my doctors at home to reference. http://www.amazon.com/Hypermobility-Handbook--Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_2?ie=UTF8&qid=1326921378&sr=8-2
So I went ahead and ordered that. I was VERY excited with all the info. and the confirmation that I have been right all these years after all.
When we finally got in it was for me to be weighed/blood pressure taken, etc. Then I saw another nurse who asked me about meds and some of my medical history. Then another girl came in (a student I think) who asked me more in-depth medical history questions such as if I've had any hernias, asthma, growing pains, that sort of thing. She had many questions to go through.
Finally we got to see Dr. Tinkle. I didn't tell him a whole lot because I wanted to have an unbiased opinion. He looked at my feet and noticed they over-pronate. I said, "Yeah that's what Dr. Grahame said, too." Dr. T. said, "THE Dr. Grahame???!" That's when it came out that I'd already been to the EDNF conference and was on the support groups, etc. But like I said, I wanted an unbiased opinion.
He said right away that I DO HAVE EDS HYPERMOBILITY TYPE. This was a relief for me because it confirmed what Dr. Lavallee and Dr. Grahame had said earlier. But, I never had an official diagnosis on paper and that was why I was there! I wanted to confirm the type, and get the diagnosis on paper so I could show my docs at home. Dr. T. said I need to get some inserts for my shoes to stabilize my ankles (Dr. G. had also said this but I never got around to it...)
Dr. T. said some of my migraines may be due to TMJ probs. I told him I do have a splint I wear every few nights, but when I'm having spasms in my neck it is uncomfortable to wear it. He said that what I really need is PT for my TMJ. I never got that - just a splint. So he researched a PT for me to see up here that can help me with that.
He also had some medication recommendations he wrote up for my doctor in the same letter explaining my EDS diagnosis.
The weirdest/most interesting thing he said was that my gastroparesis is caused by my POTS and low blood pressure! So the only things I can do are continue to eat the small frequent meals, avoid eating cold things or too much fat/fiber, drink plenty of water and eat plenty of salt. My gastroenterologist was right in a way. But wrong in how he gave me NO insight!
He also recommended I get his book (not so he could become rich - he noted that he still drives a Hyundai). He said it was for my own info. and for my doctors at home to reference. http://www.amazon.com/Hypermobility-Handbook--Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_2?ie=UTF8&qid=1326921378&sr=8-2
So I went ahead and ordered that. I was VERY excited with all the info. and the confirmation that I have been right all these years after all.
Tuesday, December 27, 2011
Rude inconsiderate people at the holidays!
Again I am floored. Apparently there is someone at work who complained I am eating during work hours? I am once again very upset. It is upsetting to deal with health issues and then to have rude, inconsiderate and petty people to deal with on top of it??! I'm not sure who "mentioned" this to my boss but then I had to explain to my boss what was going on with my stomach/digestive tract and how I have to eat "small frequent meals"! She really didn't know, and now she can tell these people next time they comment. Still I was very hurt that these people were being so petty. I don't really like to tell everyone my entire health saga. #1 it's none of their business and #2 it's TMI for people without EDS! I save it for my close friends/family members and other EDSers. I figure it's on a "need-to-know" basis. And these co-workers really don't need to know. They know I don't eat certain foods and they know I had my gallbladder out recently but they couldn't guess from that there might be more?! Are people that dumb?? OR just inconsiderate? It was very embarrassing because I felt like I was being accused of being a bad worker; like I don't want to work - I just want to eat and goof off. And all these people are watching me goof off and gossiping about me behind my back with no regard for my feelings or well-being. Then I got upset and started crying AT WORK.
I barely escaped "not crying at Christmas" by preparing my own food for all parties. At one party there was literally nothing I could eat besides cheese cubes and what I had brought. I could feel the emotions welling up at others' lack of understanding and empathy but I smashed the tears back down. That is just what I go through with the stomach crap. And no it's not better - I think I lost another 5 lbs. Blech!
Friday, December 16, 2011
Dealing with it on my own. . .
So after being extremely pissed off at all doctors for about a week I decided I was on my own for now. I Googled gastroparesis and looked up what tips I could. Turns out there are LOTS of other EDSers dealing with this same nasty problem. There ARE some things I can do besides the obvious frequent small meals! (Thanks for nothing, doc!) One of the things they sometimes prescribe is antihistamines. So I went to Walgreens and got myself a $4 box o' Benadryl!!! That was the very first thing I did. I have noticed that if I mess up and eat something "bad" (tomatoes, gluten, milk, etc.) I will feel tons better if I take some type of cold medication. So I thought hey maybe this is the key. I decided to start taking Benadryl and see what happens and that has made a WORLD of difference. It might not be the best solution but it's the best I can do right now.
I am also eating my "small frequent meals" - eating about 5-6 small meals. If I eat too much at any one time my stomach will cramp up and I will get diarrhea. I guess my GP is not severe because I never throw up, but I'll feel kind of nauseous and groggy also if I eat too much.
I've been avoiding too much fiber and too much fat as the not-so-helpful nurse repeated to me that can slow the stomach down more. But I learned more in 10 min. on Google than I learned from that lady. . .
Meanwhile I also lost my acupuncturist. He had been sort of irritating me lately too. He accused me of being "too stressed out" but I am quite sure stress does not cause GP! He moved to another state which I totally understand but I don't appreciate being made out to be a "basket case." Before he left he gave me a few more tips for my stomach. He didn't have a clue on EDS or GP but he told me some things that would soothe the stomach lining. I probably won't miss him :-) Although it will be interesting to see if I get better or worse without my acupuncture treatments. There is another acupuncturist that took his place I can always look up if I need to.
I am also eating my "small frequent meals" - eating about 5-6 small meals. If I eat too much at any one time my stomach will cramp up and I will get diarrhea. I guess my GP is not severe because I never throw up, but I'll feel kind of nauseous and groggy also if I eat too much.
I've been avoiding too much fiber and too much fat as the not-so-helpful nurse repeated to me that can slow the stomach down more. But I learned more in 10 min. on Google than I learned from that lady. . .
Meanwhile I also lost my acupuncturist. He had been sort of irritating me lately too. He accused me of being "too stressed out" but I am quite sure stress does not cause GP! He moved to another state which I totally understand but I don't appreciate being made out to be a "basket case." Before he left he gave me a few more tips for my stomach. He didn't have a clue on EDS or GP but he told me some things that would soothe the stomach lining. I probably won't miss him :-) Although it will be interesting to see if I get better or worse without my acupuncture treatments. There is another acupuncturist that took his place I can always look up if I need to.
Not a happy camper
It has taken me a couple weeks to post this because I am extremely unhappy with my doctor and unsure what to do. He did diagnose me with gastroparesis but he said it was "mild." When I asked the nurse on the phone about the other findings of the scope she said it was just consistent with gastroparesis (GP for short); the food not emptying properly from my stomach is irritating the stomach lining. I said, "Don't you want me to come in for an appointment or something?" and she said, "No just eat frequent small meals and call us if it doesn't get better." She claimed there were no meds for it. I was TICKED!!!! No not ticked, PISSED!!!!! Because I knew there were meds. All you have to do is Google GP to find a list of meds.
They don't want to give me the meds which is their choice but why lie to me and treat me like I'm stupid? Why not SAY you don't want to give me the meds, or SAY the side effects are nasty or give me a few other options other than "frequent small meals" which I have already been doing all flipping year?! I felt totally brushed off; I was continuing to lose weight and unable to eat. I had just received this diagnosis but was still having symptoms and at a loss for what to do. I felt myself getting very angry and started arguing with the nurse about what to do and finally I thought you know what?? I'll play your dumb game and pretend to eat "small frequent meals," but I'll be calling you right back in a few weeks :-(
I wasn't sure what to do for several days. Part of me wanted to call them back and yell at them; part of me wanted to play nice and play their little game because hey everyone deserves a second chance and maybe, just maybe, it wasn't the doctor's fault. Maybe it was the nurse giving me the brush-off. Also, there are not a lot of GI docs in my area and I don't want to lose this guy unless I have to. I researched a few other GI docs but I didn't have any assurance they wouldn't brush me off like the others. A HUGE part of me didn't have the time or energy to mess with them. Finally I decided I would just wait until the holidays were over as all the doctors' offices seemed to be very busy and distracted. I will call them then and say, "I am eating small frequent meals but gosh darn it! :-) I am still having problems!" And see what they say. If they brush me off again, I'll find another GI doc.
They don't want to give me the meds which is their choice but why lie to me and treat me like I'm stupid? Why not SAY you don't want to give me the meds, or SAY the side effects are nasty or give me a few other options other than "frequent small meals" which I have already been doing all flipping year?! I felt totally brushed off; I was continuing to lose weight and unable to eat. I had just received this diagnosis but was still having symptoms and at a loss for what to do. I felt myself getting very angry and started arguing with the nurse about what to do and finally I thought you know what?? I'll play your dumb game and pretend to eat "small frequent meals," but I'll be calling you right back in a few weeks :-(
I wasn't sure what to do for several days. Part of me wanted to call them back and yell at them; part of me wanted to play nice and play their little game because hey everyone deserves a second chance and maybe, just maybe, it wasn't the doctor's fault. Maybe it was the nurse giving me the brush-off. Also, there are not a lot of GI docs in my area and I don't want to lose this guy unless I have to. I researched a few other GI docs but I didn't have any assurance they wouldn't brush me off like the others. A HUGE part of me didn't have the time or energy to mess with them. Finally I decided I would just wait until the holidays were over as all the doctors' offices seemed to be very busy and distracted. I will call them then and say, "I am eating small frequent meals but gosh darn it! :-) I am still having problems!" And see what they say. If they brush me off again, I'll find another GI doc.
Thursday, December 1, 2011
Gastric emptying study
This test actually sort of sucked more than the upper endoscopy. They made me eat egg beaters laced with some nasty radioactive dye or something. I don't eat eggs anymore, so they felt like a big pile of rocks in my stomach and I felt very queasy... but apparently eggs work best for this test in my doctor's opinion. Then I layed under a scanner machine for 60 seconds as a picture was taken of my belly. This was repeated at different time intervals. Luckily I was able to get up and read my book, use the restroom etc. in between pictures but it took FOREVER and I was not allowed to drink even a tiny sip of water for four hours after eating the eggs. At the four-hour mark, they took my last picture and I was free to go, eat, drink and take meds etc. At that point there was a raging blizzard going on and I thought it was definitely up there with one the weirdest days in my entire life. But, hopefully they will tell me the results within the next couple of days.
Meanwhile the vitamin D definitely has calmed my tummy a bit and also I did some research and saw that calcium supplements can sometimes help with bile after gallbladders have been removed. Apparently something in the calcium sort of soaks up the extra bile that is now flowing freely through. So after I got used to the vitamin D I started taking some Citrical tablets and those have helped a LOT - WOW! Maybe I won't have any more of those "rushing to the bathroom with the IV bag" spells ever again :-) I wish someone would have told me this little tidbit before! I guess that's not something people go around talking about. I do still take bile salts and digestive enzymes but I was still having a diarrhea attack maybe once a week until I took the calcium now - none!
Meanwhile the vitamin D definitely has calmed my tummy a bit and also I did some research and saw that calcium supplements can sometimes help with bile after gallbladders have been removed. Apparently something in the calcium sort of soaks up the extra bile that is now flowing freely through. So after I got used to the vitamin D I started taking some Citrical tablets and those have helped a LOT - WOW! Maybe I won't have any more of those "rushing to the bathroom with the IV bag" spells ever again :-) I wish someone would have told me this little tidbit before! I guess that's not something people go around talking about. I do still take bile salts and digestive enzymes but I was still having a diarrhea attack maybe once a week until I took the calcium now - none!
Endoscopy report!
Oh my goodness they actually found something this time. That's all I can think ;-) I wasn't sure whether to hope for finding SOMETHING or finding NOTHING... in the end they found at least four issues!!!! Going in, my stomach was extremely crampy because I'd eaten some salad and some cheese the day before. Not smart. After I'd already been hooked to my IV I had to run into the bathroom. Rather embarrassing! The nurse asked if it was nerves and I said no - it was probably from what I'd eaten the day before. The nurses who prepped me were a bit impolite and that didn't help my stomach calm down. They asked me if I'd lost weight and I said yes, 20 lbs. They said "WHAT????!" in shocked tones. I was like ummm yeah that's why I'm here. (Kind of rude, if you ask me.) But the nurses in the procedure area were very nice. It all went very smoothly and I had very little pain.
They said I would be too groggy to remember any of this but I heard everything the doctor said afterwards. He said I had gastritis, possible heliobacter pylori, damage from celiac disease and problems with stomach emptying. Apparently there was a pill just sitting in my stomach not going anywhere?! The stomach emptying was the "kicker" for me - I had heard of that happening with EDS but I didn't really consider it. But apparently that has been the main issue! They sent me home to rest and scheduled a gastric emptying study for the following week.
I went home and rested for the day, watched TV and chatted with my mom who'd been my chaperone. I kept waiting for my throat to hurt but it really didn't at all. I was just sort of tired. The next day I got a migraine probably just from the stress. THAT WAS IT! A pretty simple test and I felt so vindicated that I've been right all along about what was wrong with me; problem was I just took too long to get it checked out and/or the symptoms were too vague to get anyone to take them seriously! And the gastroparesis/slow stomach emptying is a total EDS and Chiari "thing" which also makes me feel vindicated after all these years. So in a way I was happy to find out all these things were wrong with me so at least now I can do something about it. And most of all now people will know I AM NOT CRAZY! :-)
Subscribe to:
Posts (Atom)
