Sorry lengthy, but I am ready to throw in the towel or die....
#315812 - 10/01/07 05:54 AM
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LtDanFan
Reged: 12/17/03
Posts: 588
Loc: Ohio
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Hello my fellow ibsers. I have been with this board for 4 years and have had great suggestions, tips, friendships, etc. But after my IBS attack last night I am just not sure which doctor to go to next. It started out as my normal IBS attack, I knew it was coming, I get kind of a flushing sensation (like you might faint) and get chilled then my stomach will start cramping. I was in the process of drinking my peppermint tea and had taken a lorazepam just before that because I felt it coming on. I went and laid on the couch with the heating pad, finished my tea and laid there and laid there and laid there in the most God awful pain I had experienced in a long while. I generally have my cramping in my descending colon, but this was there, my sigmoid colon, above my naval, all over and so intense that I started getting nauseated and started spitting out nausea taste in my mouth....then the numbness and tingling set in (which I have had before) but NEVER this severe. My husband was home to experience and witness the intire attack. Both arms got cold and my fingers on both hands went numb and tingly, they were froze in this state and I could not move them. He tried opening and closing them for me to try to get some circulation in them, but I had no control over them. Then I started getting the tingling across my chest, up my neck and down my leg and toes. It felt like (when you sleep on a part of your body and wake up and it's asleep and it's kind of numb and tingling). I continued with the nausea and this tingling sensation to the point where I started shaking and basicall could not move, my legs and feet were tingling so bad I could not stand up, meanwhile, when the nausea, tingling sensation started it ws brought on by my colon cramping (which was horrific). I literally wanted to die and told him I was making an appointment to today to find someone who will give me a colostomy. I was not "nervous or panicky" before this hit, I was sitting outside sipping my tea enjoying our fire pit. I ate cooked potatoes and cooked carrots for dinner and a slife of "safe" french bread. I was once told by my favorite internist (who is no longer in practice) that when I have the passing episodes from an attack that it was a vaso-vagal episode and it was my colons way of trying to work properly and by doing so it was taking the blood is needed from my heart, hence me getting faint and passing out. I did not pass out last night, but I was basically in the "froze" position on our couch with my husband giving me sips of water with is hand. I had taken my Librax (for IBS, yeah right) and he had gone and gotten me a Levsin sub-lingual (also for colon spasm) to put under my tongue, at this point I was desperate because I KNEW as soon as I could poop (sorry) my symptoms would go away. Neither medication helped with the colon spasm (so what good are they)...I have often wanted to just quit all colon spams prescriptions, but am so afraid that if my symptoms are this severe with them, what would it be like without them? My like new GI doctor, that I was a drug seeker, bcause I was trying to explain to him the pain (I have never used anytype of narcotic when having an attack) He wanted to do a 4th colonoscopy, and I had just had one a year prior, which should the same thing, colon spasm in the ascending, tranverse and descending colon (which was worse). He said that everyone's colon has spasm and he would not consider them abnormal colonoscopies..... (jerk) The last one I had my internest had to blow so much air into my descending colon to get it open to he would finish the test, he said he was amazed because it completely shuts....I'm sorry, but I was so desperate, this sounds like a colon spasm/IBS attack/vascular type situation because of all the numbness and tingling, bt who in the heck is going to see me and take me serious. I cannot live this way any longer, the older I get the worse my symptoms get and that's watching every tiny tid-bit I put into my mouth and reading every label, etc....I have wanted a colostomy before, I am not sure if you can just ask for one, but if I do get one will the pain go away? Please I have serious about this and very desperate. I forgot to mention that this excapade lasted 3 1/2 hours before the water diarrhea kicked in for like 5 bms...
Cheryl 
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IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13
Edited by LtDanFan (10/01/07 06:03 AM)
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I still don't know how to use this board yet. I'll try and make this brief; I've had similar problems in the past, notice I said in the past. First of all I started going to natural paths, I'm sure you've met many who have, but the secret is meeting the right doctor, the right fit so to speak. I took drugs for only 3 months and realized it was only a band aid. So, to make a very long story shorter. I learned that all of us can't have a one size fits all diet, so I started looking into alternative foods, etc. I discovered that I can't eat bread, no matter how natural or fresh. The yeast makes my body freak out and swell. It also constipates you. The thing about the colon is you have to keep it calm and only eat things that are easy to digest for you, not for someone else that says, how good they feel after eating whole grain bread or whatever it may be. You have to go by common sense in terms of, how is your body reacting when I do this, or when I eat that. Another thing I found is Slippery Elm capsules, they sooth and coat the lining of your intestines and it's also an anti-inflammatory herb. Very mild, but so wonderful a God sent.
When you're doubled up in pain, use ice packs, not heat, you already have all kinds of heat in your intestines, cool it off; I also learned this, when I was on my period, it really helped. Just remember, you know your body better the anyone else, in terms of how it reacts to foods or stress. You have to take control of how it functions. If you have any faith in a greater power, then put that trust in the fact that you will find an answer, you just need to go within yourself and stop being afraid of trusting your own instincts.
For me, the rule of thumb is no bread (yeast), no heavy animal protein or very little in a vegie stir fry since it's hard to digest. No spices, watch the sugar intake, and make vegie juices for yourself or buy them at health stores, your body will appreciate the minerals you're giving it, that it usually can't get from the food. That's another reason for the dizziness, you're not absorbing, so calm the insides down and read up on juicing books and how millions have healed themselves through this method.
Good luck I know you'll get through this, I did, and I'm 45 now.
I hope this helps you, it's done wonders for me.
Liv
Edited by Livs (10/01/07 10:59 AM)
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Have you been to a naturopath? I really suggest going to one, especially if GIs and family doctors aren't giving you the help you need. Do some research to find a naturopath in your area that has proper training (ie: is registered for you state), make some calls to try to find one that can help you. I just started seeing one this past month and already I'm very pleased.
PS: I another post I saw that you were taking calcium citrate. Calcium carbonate is actually the one that is better for IBS-D. Something you may want to consider. Also, if you can find a liquid calcium supplement it may be easier on the tummy. I'm taking one by Genestra (with calcium and magnesium, but it seems to be helping with the D).
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Kat
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K2
I will look for the neutropath, what are they listed under and are they expensive, I am not working right now? Also, the calcium thing, that is exactly what I mean when I get frustrated at the stuff I read on here, I read that the calcium citracte with vitamin D was the best for IBS-D grrrrr and what is up with the maganesium, I posted about that also and got no responses, I heard maganesium was not good for D.....
Thanks
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IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13
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Thanks for the tips, I know everyone says I should know my body, but I get stable eating things that I do for weeks and then bam, I have attacks....never knowing what caused them especially if I"m eating the same things. Granted there are times when I may have a bite of a reese cup and get crampy and that one I can figure out, but before 15 years ago, prescription meds, and this board, a zillion tests, I used to eat ice cream, cheese, fried foods, taco bell, wendys, pizza and I never had attacks like I have now, there was a time in my life when I had mountain dew and donuts for breakfast every morning with no problem. I would maybe have an attack once every 6 months eating this way, it seems once I was poked and proded, offered all the soothing techniques, prescriptions, fiber, "safe" eating I got worse. I have read that IBS is supposed to get better as you age..... Please know, I do not eat ice cream, milk, cheese, fried foods, mountain, donuts etc.......but it does get very frustrating when you eat rice for days and you are fine then you eat it again and you get sick..........I have just had to eat rice before to stabilize myself. I used to eat apples, pealed and applesauce, but the board made me so scared of eating them because of the "fructose" levels, I gave them up. I used to love to eat a peeled apple with a little peanut butter or sprinkled with cinnamon & sugar.
I take acacia, Citrucel, eat what is called safe, no pop, no coffee, no grease, no fried foods, no beef. I myself cannot find any one specific trigger let alone many and that is what is frustrating. I do not have time to do an elimination diet, because as I said before, things that I had been eating for weeks, I eat and get sick and to get as sick as I did last night was ridiculous and I cannot live my life like this. Like today, I am frustrated after being sick last night I woke up and blasted some more, I have not eaten anything today because I am so scared to eat anything, even the so called safe stuff........so I'm having water and pepper mint tea.
I think if you directed your reply to me, I got it, sometimes I will put the person's name in the subject like so they will definitely read it. Thanks
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IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13
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I know, things get confusing on here for sure. One thing I found confusing was people recommending Caltrate (brand name) and I immediately thought it contained calcium citrate. It actually contains calcium carbonate which is recommended for IBS-D. I have found liquid easier on my stomach than pills.
Magnesium is supposed to help people with IBS-C. However after not having as much success as I wanted with just calcium, my naturopath suggested a multi mineral including both calcium magnesium to help regulate muscle contractions. I would suggest starting with just calcium carbonate, and find one that is gentlest on your stomach. Vitamin D doesn't seem to make a difference on my IBS.
I live in Canada so I'm assuming insurance and costs of naturopaths are different. This website may be a good start for you: Ohio naturopaths. If you have insurance it may cover some of the cost. Most insurance plans in Canada cover naturopath services up to a maximum amount per year. Try to find one that doesn't focus on chiropractor services. Instead find one that looks at nutrition, herbology, Chinese medicine and homepathy.
I hope you start finding some relief soon..
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Kat
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Quote:
I used to eat apples, pealed and applesauce, but the board made me so scared of eating them because of the "fructose" levels, I gave them up. I used to love to eat a peeled apple with a little peanut butter or sprinkled with cinnamon & sugar.
Same here. Do we really have to have this fructose scare? Is Syl the only one who does not eat certain fruits because of fructose ?(don't mean to single you out, Syl, but I know that you know you have FI). But these posts were the ones that created this fructose terror in me.
I have cut out artichokes, mango, papaya, peeled apples, applesauce, all pit fruits (like nectarines), and limited sweet potatoes and carrots because of the fructun chains.
Do we really have to be this strict? I will be if it helps...but I don't want to be if it's just the anxiety of it all.
I guess I don't understand if all people with IBS should limit fructose (which studies do say is difficult for us to digest) or is just some of the people with IBS?????
I don't mean to sound like a trouble maker, I'm just trying to figure all this out. 
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IBS-C with pain and bloat
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Isn't tums calcium carbonate? That would be an easy calcium supplement, but I heard was bad for IBS-D.... Good lord it's a wonder why all have anxity and have horrible stomachs.
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IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13
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I'm so sorry you're still having such a terrible time of it. If you're sure all your symptoms are IBS, I have some suggestions below. If not, I'd really try to find someone to check out your general health. I know the Cleveland Clinic is somewhere in Ohio and I've heard good things about their endocrinology department - I don't know how good they are overall, although they do say they deal with IBS. You might check out their Website and see what you think.
Okay, assuming all your symptoms are IBS, here are some thoughts. I don't remember all the things you've tried, so if I suggest something you've already experimented with, please bear with me.
I'm assuming you have tried following Heather's Diet recommendations to the letter and taking an SFS and neither has done the trick.
Calcium. I haven't found that calcium affects my IBS-D one way or the other but I know some people report it helps and I do take it for my bones. I take Tums, 1500 mg of calcium per day, 500 at a time. That works out to one regular strength Tums and one Tums E-X per dose. I take one dose at lunch, one at dinner, and one right before bed. If you don't want to take Tums, here's some further info from an old post of mine:
Quote:
Here's the sum total of my knowledge about calcium supplements:
I did some research on this when I first started on the Boards and the general guidelines I found were:
calcium citrate is good if you're constipated (Citracal)
calcium carbonate is good if you have diarrhea:
Tums (but they have mineral oil)
Caltrate
OsCal
Viactiv (but most - perhaps all - flavors have dairy)
One thing that made a huge difference for me was starting with a very small amount of calcium (200 mg per day) and working my way very slowly up to 1500 mg per day. Even as D as I tend to be, just jumping in with a lot of calcium all at once made me constipated. By giving my body time to adjust, I've done fine.
If you're taking calcium to help with your bones, you also need to be sure to get enough Vitamin D. My doctors recommend 800 IU per day. Like the calcium, I started with a low dose of this and worked my way up.
Acupuncture. I tried this before I found this Website and it helped to some degree. It didn't help nearly as much as following Heather's guidelines did and when I got a case of food poisoning that sent my IBS into hyperdrive it didn't help at all. However, if you're running out of options, you might give it a try. If you're going to go this route, I think the ideal approach would be to find an all-around Traditional Chinese Medicine practitioner who can also suggest herbs and possibly meditative exercises to go along with the acupuncture. Be sure to discuss with your practitioner what type of results you should be seeing after how much treatment, whether there will be a point at which you can switch to maintenance, and what is involved in that maintenance. Make sure you're clear on prices. Most insurance companies won't pay for this and it can get expensive quickly.
Anti-depressants. My Family Practice doctor tried Elavil (a tricyclic) for me and it worked great in terms of shutting down the diarrhea although we had to keep increasing the dose to keep the diarrhea under control. The side-effects were eventually too much for me but if you're at the end of your rope I think it's worth a try. There are also SSRI-type anti-depressants that may help IBS-D.
Lotronex. This is a big-time drug that can have serious side-effects but my GI guy insists that if you're reasonably attentive it's a good drug. I would never suggest it as a first resort but if my IBS hadn't improved with Heather's approach, I would have been on it in a flash. Only certain GI doctors are authorized to prescribe it and you should probably do all the reading you can about it to be sure you understand what the risks are and what problems to watch out for.
Hypnosis. A lot of people swear by it and I think it's worth a try.
If I were going to list these in the order to try them, I'd say this:
Try a calcium carbonate supplement but I wouldn't expect a significant impact.
Try hypnosis. It's a 3-month commitment so you'd have to hang in there for that long although some people report seeing results well before the program is completed.
Acupuncture/TCM. I'd try this at the same time as the hypnosis assuming cost is not an issue. If cost is an issue, I'd skip trying acupuncture and/or Traditional Chinese Medicine.
Lotronex. I'd try this before an anti-depressant because I hated the AD side-effects. I'd rather be super-cautious about digestive tract side-effects than have my mind feel mushy all the time.
Anti-depressant. I'd try this last.
I hope some of this helps. Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Quote:
it seems once I was poked and proded, offered all the soothing techniques, prescriptions, fiber, "safe" eating I got worse.
I know what you mean. My symptons of IBS became present after having had a traumatic colonoscopy. I should have never had it. I didn't know how to assess what was going on with my body back in February and most noticable was the change in my BMs. Looking back now, it was and still is my anxiety that's screwing my tummy up. But I know I have a mild case of IBS due to the colonoscopy from hell.
Quote:
but the board made me so scared of eating them because of the "fructose" levels, I gave them up.
Before being diagnosed with IBS, I was eating whatever I want til up to about a week before being diagnosed. After I got diagnosed with IBS, I came on to this board which I will forever be eternally grateful to, but I was and still am scared to death about certain things after reading. For example, the first thing I'd do upon waking up was take a nice long swig of water from my fridge. I'd been doing that since I was a kid. I used to drink way more than the recommended amount. Then I read somewhere here or in the book that drinking cold liquids first thing on an empty stomach is a trigger. Well, since then, I rarely even drink water anymore unless I'm at home. Right now it's 3:40 PM EST and I've yet to drink water.
Though I understand that what works for one doesn't work for another but it does get confusing. I usually have Frenc Boule bread (ingredients are yest, wheat flour, salt and water). My grocer ran out and so I got sliced fresh Kosher bread with the same ingredients. Wouldn't you know it that it gave me D cramps? Like what's that all about? (Maybe it's all in my head and it's me making myself believe that ALL I can have is French Boule bread). Anyway, it's definitely a confusing yet learning process. 
And by the way, how's this for making you feel better: I've been gassy all day (thanks to the Kosher bread) and crampy and I have an appointment for a vaginal sonogram after work! I don't know how I'm going to hold back while I'm spread eagle! 
I hope you feel better. 
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Wendy IBS A thru Z
Taking it one day at a time...
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