waitin' for a miracle: help for my treatment-resistant IBS *DELETED*
#70327 - 05/14/04 06:36 AM
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Post deleted by rick401
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Hi Chris,
I am so sorry to hear that you are having such a hard time, it sounds like you have been through so much already and still no signs of relief! I really don't know of any other tests that you should have. There are a lot of people on here that I am sure will be able to help you. I just wanted to say hi and let you know i was thinking about you. Don't give up, there is a light at the end of the tunnel...we just have to find it!
chrisine
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Wow Chris...it looks like you've done everything right so far....BUT you definately need a colonoscopy!!
I think that is a really important test and you should demand it!!
I really can't think of anything else to suggest to you...it sounds like you've been doing it right.....maybe someone else will have a suggestion??
Hope you feel better soon
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Hi Chris,
Wow, you've certainly been through the mill, haventcha?! I don't know if there's much I can suggest, but I'm gonna try.
You didn't say HOW you're fixing your insolubles. When you have fruit and veggies, how do you prepare them? I'm sure you know how by now, but I'm just wondering if maybe you might benefit from something like a juicer? I have problems with "roughage" and have been considering investing in a juicer so I can turn carrots and celery into something more digestable. Lately I've been craving grapes! OMG! (Put it out of your mind, Bev, just FORGET it!)
Also, Chris, have you told your doctor about your problems RECENTLY? I mean, maybe he felt you didn't need a colonoscopy back THEN, but if he knew what you're going through NOW, perhaps he'd change his mind. I'd push for the colonoscopy, I really would.
You mentioned that you've already tried an antidepressant, but the different kinds do vary, especially the side effects. I used to be on Wellbutrin, but now I'm gonna try Paroxetine (see the article in Heather's new Newsletter and in the Research Board). I called my doc yesterday, and he gave me a prescription for it. It's supposed to relieve IBS symptoms!
I hate that bloating and gas -- especially the gas, because it's impossible to be around people!  But all we can do is try different things and just "keep on keepin' on....."
Good luck, Chris! (And it's good to see you back here.)
Bev
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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I agree, you need to get the colonoscopy. Esp. since you are still so sick. Something else could be going on...crohns, ulcerative colitis, etc.
I feel for ya! Take care.
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--Julie
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Oh, Chris, I'm so sorry to hear about your intractable IBS. The only two suggestions I can think of are to double check Heather's seven deadly sneaky IBS sins from the past newsletters. And you didn't mention anti-diarrheals such as Imodium, etc.
Good luck, my heart goes out to you. No one should have to suffer like that. Or like our AllieGator in her recent post. For the third time today I am forced to say that sometime life is just NOT FAIR!!
Keep us posted okay?!
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Laura
Keep it simple!
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Paroxetine
#70552 - 05/14/04 06:14 PM
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Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
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I just wanted to second what Bev said about trying the Paroxetine, I was on it for about a year and a half and so far it was the only time my stomach felt better. Sadly it made me gain a ton of weight so for health reasons I had to go off it.
Just a tip for anyone starting it, watch how much you eat! It's so easy to gain crazy amounts of weight on that drug I found!
Kelly
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Oh No, Kelly!
#70557 - 05/14/04 06:44 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Oh please tell me this isn't so. PLEASE! I can't gain more weight. My cholesterol is already too high, my blood pressure is too high (well, with the drugs I'm taking, it's finally way down), but I'm trying to LOSE, not GAIN.
My doc told me that the side effect to this drug is increased appetite. I considered not taking it because of that, but he said the risk is VERY minimal. Now maybe he was being too optomistic.
You gained weight because your appetite increased? Oh please say it isn't so. I had great hopes for this drug....
Let me have it between the eyes. I can take it.
Where are those worms?
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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I'm sorry Bev  I personally did have a really hard time with the weight gain, but then, I have very little willpower (or at least I didn't then).
I personally think it was a three-fold problem:
1. Increased appetite
2. It calmed my stomach so much that I was able to eat a lot of the "bad" food I hadn't been eating like fast food, chocolate, chips etc.
3. It often slows the body's metabolism of carbs (or so I've heard) and I was eating a lot of carbs!
So yes, I did put on a lot of weight, almost 40 lbs which was just really shocking for me! I can't say it was entirely the drug, but it definately contributed to it. I'm sure there are people who don't gain that much weight on it, I think you'd just have to be really careful.
It's a love/hate relationship for me with that drug, the weight gain was terrible, and I had bad sexual side effects from it (lost my sex drive completely) but I must say it really helped my tummy.
One more thing, I personally found it incredibly hard to get off of, and my doctor agreed with me that it's one of the worst for withdrawal symptoms. You may want to check out this website: www.paxilprogress.org just to read a bit about it and give you some information before you try it.
Sorry if this is disappointing for you, please don't not try it just because of what I said, it might work very well for you!
Kelly
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Post deleted by rick401
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Post deleted by rick401
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Hi Chris,
I'm new( from this week) on this board and I wanted to say hi!! and encourage you!! What you live is not easy!! You make so much efforts triing to feel better!
I may have some suggestions:
- Did you try different kinds of probiotics (another brand)... I know some people who changed brand and noticed better results!!!!
- Did you try to eliminate gluten from your diet. Some people have good results even if they don't have coeliac disease!!
- Some people have good results with a psychotherapie. To learn how to manage the stress, to live better with IBS... Psychotherapie helped me a lot!
Good luck!!!! and I hope that you'll find something that is going to work for you!!!!
Byebye!
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Hi Chris,
So sorry that you are having such a hard time. The only thing that I can mention that hasn't been mentioned yet is to check for sorbitol/mannitol in especially vitamins, etc. I found out that was a big trigger for me the hard way. Also, lactose is in vitamins and medications, too. Have you tried phazyme for the gas?
Feel better soon
Barbie
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Thanks Kelly
#70594 - 05/15/04 07:12 AM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Hi Kelly,
I am SOOOOOOO disappointed. I had high hopes for this stuff.
I won't be taking it. Unfortunately, I had already called the doc, and he called my prescription in to the pharmacist, so it's sitting there, waiting for me to pick up. Although I read hubby your last post, and he told me not to take the stuff, he's anti-ANY drug, always been very conservative about any kind of medication, so he's not very objective when it comes to this kind of thing.
My insurance has approved payment, so I'm stuck as far as picking it up and paying for it. However, I ain't taking it! I don't like the side effects AT ALL -- I really can't afford to have my metabolism slow down any more than it already is, and I certainly don't need to be taking anything that's difficult to get off. "One of the worst for withdrawal symptoms"? NOT acceptable!
Kelly, I can't thank you enough for your input. You're a gem. Hope you're doing well.
Bev
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Hi Chris-I'm new to site. I'm sorry you have to go through all of this. I'm not sure if I can be of any help but I think you should check out this website: www.juiceplus.com
At least look at it,it can't hurt,maybe it can help.
I'll keep you in my prayer.
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Chris, I understand all of the gas and gas cramps, the depression...., should your dosage be elevated? I am going through a time of it with my depression also. I am currently taking Prozac, it seems to be helping with the anxiety. What do you take? My anxiety levels can be very high at times, just interested about your meds in that department.
Good luck, I hope someone here can help you, I will say a prayer for you honey.
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Dont tell God how big the storm is, tell the storm how big your God is !!!
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Post deleted by Jeano
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Thanks Shelby
#70627 - 05/15/04 09:02 AM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Good suggestion. I called, but they're not open yet. I'm going down there to pick up my blood-pressure med refill anyway, so I'll just tell them in person. I SOOOO don't want this stuff.
Thanks!
Bev
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Colonoscopy done is a good idea. Hope you feel better soon and I will pray for you.
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colonoscopies
#70639 - 05/15/04 09:45 AM
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jenX
Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA
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i don't see how your GI doc could, in good faith, not send you directly for a colonoscopy considering all the suffering you have been through.
it's MANDATORY that you get one to rule out other things like Crohn's and Ulcerative Colitis.
if that doctor does not send you for one, i strongly urge you to go get a new GI doc. may be time for a fresh persepective, anyway.
sorry you're feeling so unwell after all the things you've tried. wish i had more advice...
*j
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colonoscopies actually involve a scope going through the large intestines/colon. it give the doctor a way to view the surfaces of the large intestines to see if there are any ulcered areas, any unusual pockets, and disruptions or abnormalities of any kind.
i don't really care for the fact that your doc doesn't see the point! yes, you're young. no, you haven't seen blood. but you've had diarrhea almost constantly for YEARS. i believe that warrants a colonoscopy. in fact, it's the front-line test for most GI docs.
i really think you need a new doctor.
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Sorry it didn't work out for you. You know, despite the fact that it really helped me stomach, if I had known how my body was going to react and how hard it was going to be to get off it, I really don't think I would have started it in the first place. But you know what they say, hindsight is 20/20.
I feel badly though because you were hopefully about trying it, so I'm sorry about that...have you tried other SSRIs? I'm going to try Effexor because weight gain isn't a side effect of that one, I'll let you know if it helps 
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A Helping Hand
#70689 - 05/15/04 01:58 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Don't feel badly AT ALL, please! In fact, just the opposite -- I want you to feel good because YOU HELPED ME IMMENSELY! If it hadn't been for your post, I'd be taking that stuff right now! And it's not good stuff. No, you did the right thing, I'm VERY grateful, Girlfriend. Hopefully one day I can return the favor.
I went to the pharmacist a few hours ago to pick up my blood pressure refill, and told David I didn't want the Paroxetine, and I told him why. He was terrific about it, explaining that he understood perfectly because HIS WIFE HAS IBS! I pulled out my note pad and wrote on it, "Heather Van Vorous, 'The First Year'" and then gave this website. I gave the note to the pharmacist and told him all about the Boards. He was very grateful, telling me he would give the note to his wife, who he was sure would check it out, then he put the note in his pocket.
I just love it. You helped me, I helped him, he helped his wife.
So see, you should feel DAMN GOOD! 
Your friend,
Bev
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Re: colonoscopy
#70707 - 05/15/04 04:02 PM
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suzyq
Reged: 05/22/03
Posts: 630
Loc: Northern Ont. Canada
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Chris; how do they find Crohns/colitis from blood testing? I have UC, found by a colonscopy.I am going for another colonscopy at the end of the month; because I do bleed and have been bleeding more than usual. The GI Specialist( a new guy for me) wants to "look" and see if its still UC or proctitis or Crohns or whatever! Only way he can determine what it is, is through a scope. He can also see if there are polyps which I have had removed from the last scope and nothing was detected. Bowel cancer can come at any age,sorry, especially if you have IBD.By the way I'm only 43,but started with IBD at the age of 38. Which is why I am to have a colonscopy every 1-2 yrs. Ask your GI for a colonscopy just for the hell of it!! Take care Sue
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