IBS - CHRONS - COLITIS ??? Not sure what is wrong ?
#212519 - 09/12/05 03:21 AM
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furfect14
Reged: 09/12/05
Posts: 6
Loc: CA - USA
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I have recently been suffering with some health issues. Still trying to get a diagnosis. I have had tons of tests run and am now set up for a colonoscopy. I also have fibromyalgia -YUCK! and have had stomach issue since birth. Recently my husband and I moved to CA, a long way from home (NH). My entire family is on the east coast and here i am on the west. I seemed to be doing fine and then it hit. I was out one morning for what was supposed to be breakfast. I ended up eating lunch and after about three bites it started. First my lips got all tingly, then I became dizzy, shortly after the pain started. It hurt so bad , it felt as if my stomach were twisting and turning into knots. It was directly under my chest in the middle and the lower belly felt upset. I was very thirsty, although i did not want to drink. At first I thought I was having an allergic reaction so we rushed to the hospital. After a while there it was apparent that was not the case. I was feeling what felt like waves of energy throughout my body and heat that seemed to rush through along with these electric waves and jitteriness Sounds strange, it's hard to explain. The hospital ran some blood work, urine test, checked my heart and nothing. They sent me home as there was not much they could do. I suffered with the pain all night until the next afternoon, it was so unbelievable painful. Finally I was feeling my self again but was terrified to eat. Someone had suggested a reaction to MSG but it just didn't seem normal to me as I have had them in the past. Then, around 5 days later it hit again. I had stuffed myself this day, chocolate cake, pasta ... I was up really late it was around 1:00 am and I was sitting watching TV when it started again. This time the pain was worse, all the same symptoms plus now my muscles in my legs were also cramping up. The heat and waves of energy were intense. I had diarrhea that seemed to be covered in a clear mucus like substance - very strange. I want to the emergency room 2 more times with this one. It lasted for 3 days, it was so terrible. I also visited with my Doctor, he advised me to take a round of Prilosec, it didn't help. He also ran a bunch of test, more blood work, an ultrasound, stool tests and I had an endoscopy - all normal. I visited my OBGYN who did a urine also and an exam, the pap came back normal.
Now, here I am eating only my safe foods: sour dough bread, baked chicken, pretzels, egg whites and a few other things.I've lost 15lbs. I am still having extreme gas and bloating and belly upset every day. Every now and again I feel that heat but it is much less sever and is usually in my scalp and ears, upper body. I guess that could be panic disorder but am not sure. I know my nervous system is frazzled right now.
I am beginning to wonder if some type of infection, bacteria or something, set it off. I wonder if it is the environmental changes here with all this pollution sitting in the air. I guess the why doesn't matter, I would just like to know what. I have been suffering with the fibro for years and now this. I'm tired of being sick and feeling very, very sad. I feel like I am getting nowhere and I am scared.
Anyone suffered similar symptoms? Any info would be great. Also if anyone know of support here in central CA please let me know - Thank to all.
Erica
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Hi Erica,
I too am undiagnosed as all my symptoms only started 2 weeks ago. The emergency room here did absolutely nothing here for me but feel my stomach and sent me home to take immodium (?), - which made things worse. This diet is the only thing that is giving me peace right now. Last Tuesday my doctor finally came back from holidays and I was able to give blood and a stool sample on Wednesday. Still haven't heard back on those yet. PLUS still waiting for a call for my u/s appt, and a call from the specialist.
My symptoms, I feel, are a little different. I don't feel ill while I am eating certain food but hours later and usually in the mornings it is the worse. Lots of times my cramping will reduce in the afternoon but then I usually have bloating. I have lost 9lbs in the last 2 weeks. My pain at first felt more like someone was twisting my intestine. Today I have strong discomfort but sort of feels like a lot of trapped gas or almost like a knife in my stomach. I am not as good as you at describing/remembering all my symptoms.
Good luck in finding the cause, I know I need some luck myself!
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Welcome!
#212556 - 09/12/05 07:17 AM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Oh you poor thing. Having the IBS (or whatever) on top of Fibro is no fun as they kinda feed off of one another.
You say you had an endoscopy - was that a gastroscopy? And did that show some signs of GERDs (that would link in with the Prilosec rx). You need to have a colonoscopy as well as that really.
If it was a bacterial infection, the stool sample tests should've picked that up btw.
As you have Fibro the likelihood is that it's IBS anyway as almost everyone with Fibro gets IBS. Fun, eh? 
Go super gentle as the Fibro can mean that you are extra sensitive to some triggers. Try fennel tea (Heather's is the best IMHO) for the gas and bloat...and eat tiny meals based on safe SF every couple of hours. Make sure you also get plenty of safe protein - you don't need *another* reason for your energy levels to drop, now do ya? 
Also try enteric peppermint capsules - don't touch the tea if you do have reflux issues. And talk to your doc about trying an rx anti-spasmodic, as well as maybe anti-anxiety meds. I totally understand what it's like to get panicky about the pain - when you live with Fibro yet another problem seems ike just too much.  ALso, remember that while narcotic based meds are great for GI pain (as well as Fibro) they can make you a bit C, so watch that. Extra-strength Tylenol is always good. 
Good luck. And feel free to email me if you want. 
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Hi Linz,
Thanks for the thread. It's nice to know there is support out there.
So I was reading on this site tha IBS is usually a pain in the lower part of the belly but you said something about reflux; I was wondering about that. See my pain was in the upper and lwer part but the most severe pain was in the upper, right under my chest in the middle. it was like a twisting up in knots feeling that just went on and one. i would get little breaks here and there but for the mst part I was in pain. Do you think the reflux can cause the pain of IBS to move around more? I tried the perppermint tea and it seemed to upset my belly, although it was very nice and soothing 
So you have Fibro also? It's been so tough. I just turned 32 this July and I have had my fibro since I was 25, terrible. I have learned to accept the pan and have found ways to deal with it and now this  - it seems like if it's not one thing it's another. I know that my nervous system s my worst enery. I have recenly been under a lot of stree lately, stress i was not even aware of until all of this started. I moved away from my family due to a job transfer of my husbands. It has been very hard on me. We have been away from home for about 2 years no and I am finding it quite hard to deal with. I feel that now, i need muy family more than ever and I am so far away. Stinks!!
Anyway, the medicine part of it just isn't happening for me as I suffer many adverse reactions/side effects from many medicines - espically anything that is mood altering/brain altering. I just am so chemically sensitive and my bosy can't handle them. I have something here called lorazapam, very small does .25 mg. i don't take them cause they cause really bad angry bouts/mood changes, nightmare and headaches. I have them for extreme emergencys cause they do help at the moment of the panic or anxietyit's he days that follow that are hard. it's like i am having somesort of withdrawal reaction. For me, I think the best approach will be some answers and then big life changes. It's a scary process but one I am willing to take.
I heard someone say something recently that really got inside my head, he said: "It didn't come to stay, it came to pass" He wasn't taking to me just adressing a group. I am trying to keep that in my head cause I know this will pass but it is here for a reason and I need to change in order to fix it. I am very sad right now but I know it will also lead me to a better lplace cause I won't give up until it does.
Suppport is what we all need. I think this is a great place for people to talk and help each other. Do you know if there is a chat room? A chat room would be great.
Thanks again for the thread and support. You sound very positive, I wish you well.
Erica
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I'm so sorry to hear that you are not feeling well. It's really hard to hear that so many other people are having such awful pain and there is noting that can be done while in it. I totally understand the emergency room ordeal, it was awful for me as well. The Dr on duty told me that "we're not here to diagnosis just to treat a current diagnosis or symptoms" It was very painful t hear when I was in so much pain. Tthey proceeded to medicate me without knowing the the issue, only making the pain worse and loner lasting - awful. I am now terrified of the emergency room. I dread the idea of it. I am so sorry that you are struggling. I hope that you also find the answers that you are looking for and if not keep fighting for you becasue I know that we can all help ourselves out of this. It may be a hard struggle but I feel that we get to this point for a reason. Maybe our bodies are trying to remind us of what we have been ignoring in our minds; time to change I guess.
Great to hear from you, stay in contact and email me anytime. I would love to hear how you are doing.
Thanks for the thread.
Erica Furfect14@mac.com
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--------------------
Carol
nós somos o que nós somos e o descanso é merda
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Did you ever find out what was wrong with you? I have those exact same symptoms.
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Sorry Kitten, not yet.
I am still having tests run, seems hopeless. I am going for a test on my nerves tomorrow. I think it's one of those tests where they stick little gooey things all over you to measure the waves coming from my nerve endings. I feel like I have electricity running through my body, like a constant charge of adrenaline running through my body, hate it, keeps me up all night and make me feel so uncomfortable. Is your spine hurting? I am looking for an answer but I am starting to wonder if it is a never ending anxeity attack ??? who knows. I know that I have had IBS for years and that it comes out at stressful times in life. I think this is one of those times. Something is happening with my entire body and my belly, like always,, is getting in on it. Stress is not a family friend. None of us handle it well. Let me know what your symptoms are also let me know if you get anywhere with the Dr.'s.
Thanks for the thread, talk to you soon and I hope you find some relief and answers.
Erica : )
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I feel a bit better today, but still not "normal". I've had a terrible bout of diarrhea. Ick. And, unfortunately, my period started so I'm experiencing cramps as well. Have you noticed that your IBS is worse around your period?
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