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Anyone elese feel like this - pain + fatique?

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Irritable Bowel Syndrome
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Posted 3/26/2008 7:48 AM (GMT 0)

Hi Roxanne. My experience with hycosamine was exactly as you described yours.  It also wiped me out, making me exhausted and "spacey".  Don't let the doc's condescend to you about your responses to these drugs.  Keep in mind that they are all very powerful meds that often provoke side effects that are more debilitating the the IBS.

I've had IBS for over 38 years.  I have tried EVERY med available.  Like floss, my case is quite severe and has frustrated and perplexed all the doctors I have seen over the years.  With each new med introduced onto the market, I get a prescription.  None of them have ever worked for my symptoms.  Some, like the anti-anxiety meds help with the stress and fear involved with leaving the house, but they do not actually address the IBS itself.  I don't want to discourage you because everyone is different and hopefully you will find a med that works, but don't expect miracles.  This is a chronic, incurable "syndrome" which most of us have learned to live with through changes in routines and expectations.  Most importantly, you must remember that those who do not suffer with IBS will NOT ever understand so you have to get tought and learn to let some of the judgements, criticisms, and disappointments of others roll off your back. Otherwise, the emotional tumult of trying to make everyone happy will only worsen your condition.

You mentioned that you missed Church for Easter.  I've missed Church for the last three weeks and was so depressed at the possibility of missing Easter as well.  I had a team of people praying for me and fortunately, I was able to go on Sunday.  But I did miss my son's engagement party.  Yes, I felt terrible but NOT because I did something wrong.  I felt terrible because I wanted to be there and this illness got in the way.  I did not feel guilty, I felt sad.  Appropriate regret and sadness is fine.  Guilt and self-recrimination is not.

Hope your finding it helpful here!  I know I do!

Posted 3/26/2008 3:59 PM (GMT 0)
I dont know even if I got a job right now that coincided with my childrens hours if i would be able to keep from the pain. If its from the IBS, its from IC (interstial cys***) Bladder spasms, I have a device in my sacral nerves to help with over active, and the pain of IC, but it doent much seem to helps as much as the temporary one did. But I imagine if it was taken out, I would probably feel alot worse, I still am in the bathroom at least 70x a day doing something!!!! Its down from 100.
Posted 3/26/2008 4:02 PM (GMT 0)
Gutatrophe, I missised your post first time around, what is that hycostimine(SP?) suppose to do?   I have heard of it. But not that other med floss is on, just curious as to what they are suppose to do? confused
Posted 3/26/2008 4:09 PM (GMT 0)
You guys have a great thread going here, keep it up.

Hyoscyamine is an anti-spasmodic. It essentially slows down the peristalsis, or contractions, in the gut, which results in less pain. I think it's an anti-cholinergic, which can result in some of the side effects you've described...I remember when I tried that med, it just dried me up. I had much more success with another anti-spasmodic called dicyclomine (Bentyl). You might try asking your doctor about trying this alternative to see if you experience fewer side effects!
Posted 3/26/2008 5:59 PM (GMT 0)
Thanks Sarita, that is helpful, the HY one sounds familiar, the other she wasone did not?
Posted 3/26/2008 9:12 PM (GMT 0)
Thank you to all of you for hsaring your thoughts, ideas, and feelings. It is a huge help just to talk with people who really do get what IBS is about and how it can one feel. I have a better day today. I am still waiting on another specialist. My GP was on call last night, so he had the day off today. They finally called to let me know this at 3:30 today. I am hoping he will write me a RX for the anxiety , just somethng mild to take the edge off for "those" days. My mother came for a visit today. It is always nice to have her here. My kids were off form school becasue our basketball team made it to state! My kids are too young to go, it's a 2 hour drive there, and we are suppose to have a snowstorm tonight lasting through Friday. I feel better today. I was only in the bathroom about 5 times this morning! I am hoping the stress of yesturday doesn't catch up with me later :( Who knows, from one hour to the next some days. I am glad other people have had problems with the meds. Well, not that I am glad they had problems, but glad that I am not alone. Sometimes I wonder if it's just all in my head, or if I will just have to live with the side effetcs in order for my iBS to a bit more managable. I am losing weight, which is not all a bad thing. But, it's a real bummer to want to be able to eat certain things, but I just don't dare becasue I know how it make me feel. Well, Thanks so much everyone who has shared with me! I will be on later again. I am so thankful to of found this!!
Posted 3/27/2008 3:36 PM (GMT 0)
:-)  Your welcome Roxanne, thats what this forum is here for to talk to one another and share, as we understand. I am not on any IBS meds, only on meds for the GAstroparesis, and anxiety, anti depressant, which does actually help the IBS some without trying too, I switch from bouts of the D to bouts of the C, its a fine line to keep it where its suppose to be. anyway glad your here with us..... smurf .......
Posted 3/27/2008 4:27 PM (GMT 0)
yes, I am learning it is a fine line. I never had problem with this before I was 30. 6 years ago, my grandmother passed away suddenly form a massive stroke. Through that I had problems. I took imodium and muddled though the funeral ect and just thought it was form the stress and upset of passing. I never had further problems until last winter. A little each day I beagin to wonder if there soemthing was wrong. It seemed to be a little more often ect. Well, with kids and a husband I just didn't pursue it. Until last summer when it was so bad that I was in the bathroom up to 20 times just in the morning. Afternoons were better. I did see my doc then. When I was back this winter again, with the same problems, only worse, he finally said it was ibs. After having a colonoscopy ( Not sure I spelled that correct! ) and ruling out things, I started the meds. Hoenstly, now I am not able to take the meds except when i am in the bathroom alot and know I am going to be home. B/C if I take too often, I then go the other way, and cannot go to the bathroom. That is no fun either! I I called around myself today and it looks liek I do have to wait until April 21st to be seen by a specialist. Unless there someone cancels, or I find someone who can see me sooner. I really wanted to be seen within the next 2  weeks so I can get some help w/ the meds and hopefully to be able to be back to work for May. I don't work during the summer, so I really want to be able to work and feel better about myself and about IBS. You know what I mean? But, I am also a little scared to have to go back to work. I know everyone will want to know what has been wrong. I know most people just don't get what ibs is like, so what should be said? Am I making too of a deal out of having ibs? I know soemtimes I think I need to just buck up, accept it and deal with it and just move on. BUT -- That is really hard to do with all the emotions and feelings and how crappy I feel due to the ibs somedays. I had heard that hormones can play a part in IBS?
Posted 3/27/2008 4:40 PM (GMT 0)
Roxanne I havea feeling hormaones can play a role in everything!!! Just my thoughts

I had a partial hysterectomy in o6, still have my ovaries and falllupian tubes, so still get hormanal times of the month, and it seems i feel worse then. well duh, I guess any one would. I hope you get in ASAP and get help with your meds, I am praying for you.... smurf .....

Posted 3/28/2008 5:53 AM (GMT 0)
Roxanne,
Regarding what to tell people when they ask. If you tell them you have IBS, don't be surprised if they say they have IBS too. Alot of people have IBS, but most people I know that have it, it is not severe. It does not get in the way of their everyday life. Occassionally when they eat something that doesn't agree with them, they have diarrhea a few times and then it is over. So many people have told me " I have IBS too and all I do is such and such or my doctor gave me such and such and I am fine. So, I have learned when they do that if they don't understand when I briefly explain, then I just leave it alone, because they are not going to understand. Some people are more understanding than others.
Gutastrophe,
I enjoyed your post on 3/26/08 at 3:48am... you are so right and I try not to have guilt, but it is still hard for me sometimes, but I liked what you said about that.

Also, I try not to take that hyscosamine (levisyn) unless I absolutely have to, because it does may my constipation worse, but sometimes my spasms are so bad and last so long that I almost pass out from the pain, so I take it. It is very constipating for me, but it doesn't have the other bad side effects for me, but maybe it is because I have taken soooo much medicines and pain medicines in the last 4 +years. Medications can have different effects on different people and I agree, tell your doctors how you feel and don't let them push something on you if you are not comfortable with it.
I enjoyed all the posts too.
Posted 3/28/2008 7:10 AM (GMT 0)
Roxanne, seems like you have a pretty gnarly case. It's pretty rare that I talk to someone else who has gone 20x/day on a fairly regular basis! I had to smile when I read your comment "I only went to the bathroom 5 times today." I consider any day with a range of 4-6 bathroom visits a complete success but most people think I am crazy for that! I feel for you, I really do. Have you thought about taking a smaller dose of the medications you've tried to see if that helps the diarrhea but also eliminates the possibility of constipation?

As much as it sucks to deal with IBS at work/school/pretty much anywhere, I think it's important to try to keep on truckin', so I think it's great you're considering going back to work. I'm not saying it will be easy-breezy. I am a medical student and had to make a difficult decision to extend my studies for an extra year because I was so ill for the past few months. It's very humbling to have to do that but I am just glad that I am keeping it up. I find that staying busy, even if it doesn't help my symptoms, keeps me from getting down in the dumps about it. Hopefully you will find the same happens with you.
Posted 3/28/2008 7:41 AM (GMT 0)

I completely agree with floss's post regarding how and what to share with others about this condition.  I remember telling an old friend of the terrible pain and distress I have with my IBS and his response was to tell me his wife had it too and it was "no big deal".  I wonder how anyone could receive a dx of IBS with symptoms that are "no big deal."  Often, these people are even less understanding than those who know nothing about this disorder.

It's funny you asked this question because today at work someone asked me if I was losing weight.  She wanted to know if I was dieting so I told her that I didn't need to diet - that I have a digestive disorder which makes eating somewhat miserable for me.  I didn't go into great detail and she seemed satisfied with that explanation.  Many months ago I shared the same explanation with a few other gals at work and they shared with me their various stomach issues as well.  Some suspected they had IBS and one gal had actually been dx and was seeing a naturopath.  It is estimated that 20 percent of the population has this crummy "syndrome" so you are bound to bump into someone who is just as afflicted as you!  In any case, you owe no explanations to anyone.  Simply stating that you've been very ill is good enough. 

Posted 3/28/2008 12:39 PM (GMT 0)
I have to agree with Sarita, when I read only 5 times in the morning, I almost fell out of my chair, if were talked the D 4-5 a day I consider good. I am in the bathroom with my IC roughly 70x a day  with urine, and my little pacemaker isnt working so well as it used to. But it beats 100x a day peeing LOL!!!

I do pray the doctotrs can get a handle on your meds and that yyou can get some releif, are on any pain meds

thy tend to slow you down, if you know I mean. They do me anyway. And you would be killing two birds with one stone, killing the pain and maybe slowing things down.

I dont know worth a shot?? confused ..

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