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IBS Inconsistency??

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Posted 11/14/2007 5:25 AM (GMT 0)
You all have made me smile :) Thank you for your kind words.

Keriamon, 17.5 years ey? Ironic, my guy is 20 years my senior. I wouldn't normally be so open, since I don't have to. The man looks 20 years younger! To be honest, I think that in addition to possibly some personal traits of ours, I think that having a condition such as IBS requires a certain degree of maturity to handle the lifestyle.

canyonbabe711, I love the quote as well! "If I have to work that hard I want to be paid for it." Well said :)

shortnsweet9, I am right there with you. For me, being on a schedule and regularity with work, grad school, and fitness...and hopefully with my bowels is all I ask for! The social scene at the clubs and bars half the time in this day and age are not what they used to be. Thank you again for your diligence :)

And yes, he is still with me. We actually had a mini-confrontation about a small issue, but ended up solving the bigger issues at hand along the way. I've come to realize what I haven't wanted to see about my own actions that has really made me stop and think about my subconscious.

I'll keep you posted! *
Posted 11/16/2007 8:37 AM (GMT 0)
Just wanted to add to this already fabulous thread that having IBS is a direct challenge to all my personal relationships, regardless of gender or degree of intimacy.

I've struggled to make everyone in my life "understand" what this dreadful condition does to one's life.  I spent 12 years with a therapist whom I loved dearly and who helped me in other areas, yet never empathized or tried to understand the physical and psychological effect of having unpredictable, combative, and turbulent bowels.  At a recent family reunion, even my sisters showed signs of losing patience when I had to beg off an event because of pain or D.  I won't even begin to describe the lack of concern or compassion I've experienced with doctors over the last 26 years.  If our docs and therapists can't find it within themselves to understand, we will probably find it difficult with everyone else.

The point was made in an earlier post that the random nature of this condition makes it extremely complicated to explain.  It's hard to convince someone you are suffering and need to go home if, by the time you arrive back at your blessed bathroom, the urge has passed and you have moved into gas lock-down or temporary bowel paralysis while the colon reloads for the next assault.  It's hard to persuade someone you are always suffering when you empty yourself after 2 hours of D and finally begin to feel like a normal human being.  And of course, it's impossible to discuss IBS with the same kind of nonchalance that one might discuss diabetes. 

However, discussing it can give you the opporunity to separate the wheat from the chaff. I've concluded after all this time that I no longer have the energy or willingness to coach someone in empathy.  If they can't get that I am suffering, then they are not suitable for friendship, or anything else.  Family, well, not much one can do about them.  But friends and partners we can choose.  All of us are struggling every day to just keep our spirits from going down the crapper (pun intended, since we spend so much time there!) and if our friends and partners can't appreciate that, then, IMO, they either have to go or the relationship will change because clearly we won't be capable of sharing the really important issues. 

Another interesting opportunity can come from talking about this condition.  You may find, as I have, that there are others (even some you already know) who have this as well, or some other bowel problem that they too are just dying to talk to someone about.  I discovered three other gals at work who have IBS and we have our own little "support group" now.  According to statistics, 20 percent of the population has IBS so we're out there!  We just have to find eachother!

Posted 11/16/2007 11:54 AM (GMT 0)

Gutastrophe, I appreciate your thoughtfulness; you've got a lot of wisdom!  I've "only" been sick for three years or so and can't imagine what you've gone through on this long journey. 

I am engaged to a wonderful man (I remember the thread I posted here after meeting him just over two years ago).  He and I have weathered job changes, my med school application process, heartstring-tugging family issues, a cross-country move to a new city, you know; typical ups-and-downs of life in the mid-20's.  But "The Illness" brings on a whole new level of complexity.  Especially when the patient in the family is also the medical professional! 

I've just learned to smile at him, tell him I love him, crack some jokes, and try not to dig in there too deep about any part of my illness.  I've tried before, because it's just such a huge part of my life and I wish he could understand - I wish anyone in my life could truly understand - but I am grateful for the basics here.  I think we do have to remember how hard it must be for a loved one to witness this second-hand.  We feel helpless, and they feel doubly helpless for that. 

Posted 11/16/2007 1:03 PM (GMT 0)
gutastrophe and Sarita, well said and thank you for sharing.

I feel like I am listening to my own thoughts. Sometimes I wish my boyfriend could read some of these entries just so he can see all of the issues, pain, frustrations and heartache we ALL go through...that it is not just ME wanting a pity party. The only people who really do understand are my parents, and even then they forget sometimes and I have to remind them that no, I can't just "ignore it" for the sake of a social function. If I am not comfortable and in pain, you will see it and my time around them will be hell. I.E., I will not be likeable at that time.

gutastrophe, my heart goes out to you and your suffering for so many years, but I also admire your strength to not give up on yourself, since it is so easy to do. I am honestly bothered to hear of your therapists' actions. But well, they are human too. One can only be so objective afterall.

I am doing better since I changed my eating plan once again. I've actually been able to add a bit more variety as well, with careful choosing of ingredients that is. My boyfriend left, and left on a good note. We'll see what happens. But if anything, I am just looking forward to attacking this with optimism. Did you know that the once-singer "Anastasia" from the late '90's/ early 00's had Chron's Disease? I'm not too familiar with her anyhow, but I saw it on E! She actually had to have part of her intestine removed, they said, and has a scar to prove it. It's nice to hear of someone famous having something similar.

Take care all*
Posted 11/16/2007 2:10 PM (GMT 0)
gutastrophe, what you said about other people with IBS being out there is so true! I will never forget the day that I was visiting with a good friend from high school, after we'd both been off to college, and she turned down some ice cream claiming that it bothered her stomach. I asked if she'd become lactose intolerant and she said "No, I've got something called IBS, it's not a big deal." I was like "I have IBS too!" and then we both got really excited and of course started talking about it. It was so nice to have a friend to finally talking about the gritty details with and not have her get grossed out!

I also coach a girls cross-country (running) team and I had one girl who was constantly complaining of stomach cramps and taking off for the bathroom. After one trip to the bathroom I found her doubled over and crying and she told me she was really embarrassed but that she had something called IBS, and she was even too embarrassed to tell me what it stood for. She was shocked when I told her I knew exactly what it was and that I had it too. I think she was SO relieved to have someone to talk to about it. I felt so bad for her because she was only 16, but I think having me to talk to helped her deal with it a little bit better.

So anyway...yes there are lots of people out there, and if you are willing to share that information about yourself, you might be surprised who comes forward!

And I agree that having IBS can affect all relationships, but you've just got to find the people who understand that it's a part of who you are, and the people who don't blame you for it. It's one thing to be frustrated because you can't help a person, it's another thing to turn that frustration into anger at the person. My family is probably the most understanding, when I was first diagnosed I was in college and my Mom brought me home for a while and helped me get my diet under control. I remember the first night I came home, I had called her because I had passed out in the bathroom of the dorm due to the horrible pain in my abdomen. So when I got home she waited outside the bathroom door every time I was in there in case I fainted again. She was like "How in the world is that much crap (literally!) coming out of you!?!?!?" Hahahaha now we laugh about it but it sure wasn't funny at the time! So now she's really sympathetic. My friends are all pretty good too, and I think I mentioned that my BF now carries Imodium around in his pockets! The best thing is having a network of people who understand so that you don't feel guilty. And gutastrophe is right -- if they aren't willing to understand, they aren't that great of a friend anyway. Their loss, not ours.
Posted 11/16/2007 7:19 PM (GMT 0)
Wow shortnsweet9, that poor girl at only 16. I ran cross country when I was 16 also, and I don't know how I would have done it if I had IBS then. Unfortunately, it's been hard for me to find some really good girl friends close by. I wish I had a knit of close friends, even if they were few. I've moved a lot and haven't really had much luck. But then again, I was living in L.A. for a couple years and the majority of young women want to live up the Hollywood fantasy lifestyle. I.E. partying, drinking, etc. Aside from that, I was always working and struggling to keep an apartment, food, etc. so...I didn't get the chance to explore the better areas.

But yes, it is definitely important to find good genuine people who really care about you, all stinks included [literally!]. I'm sure it is difficult for any loved one to see you in pain, suffering and no medical resolution. I've gotten so sick and tired of my boyfriend saying the same thing: "There's got to be SOMETHING you can take." Everytime I hear that statement, I swear my temperature rises 50 degrees and I want to explode at him! I think if there were something that would make my issues disappear I would have heard or tried it! When you are suffering with IBS you'd be surprised at the hours spent researching online, through books, medical journals, everything to get some answers. Of course, I never go ballistic on him because I know he is just frustrated for me and doesn't like to see me in pain. Aside from the fact that he wishes he could do something, though he really can't. He's said it makes him feel helpless. So, just as others need to be understanding of us, we too must understand that they simply don't know and never will unless they become cursed along with us...and it must be uncomfortable even at times for them.

At least we all have each other here! Imagine if we did not know ANYONE else had IBS? I think I would have jumped off a bridge by now! Not literally, this isn't a call for help don't worry :P.
Posted 11/16/2007 10:32 PM (GMT 0)
Has anyone got the link to the spoon story?  Maybe Nicki can use that to help explain her IBS to her BF. 
Posted 11/16/2007 11:52 PM (GMT 0)
Spoon story ey? The name is quite...interesting...but intriguing tongue   haha
Posted 11/17/2007 10:15 AM (GMT 0)

Sarita said...

Gutastrophe, I appreciate your thoughtfulness; you've got a lot of wisdom!  I've "only" been sick for three years or so and can't imagine what you've gone through on this long journey. 

I am engaged to a wonderful man (I remember the thread I posted here after meeting him just over two years ago).  He and I have weathered job changes, my med school application process, heartstring-tugging family issues, a cross-country move to a new city, you know; typical ups-and-downs of life in the mid-20's.  But "The Illness" brings on a whole new level of complexity.  Especially when the patient in the family is also the medical professional! 

I've just learned to smile at him, tell him I love him, crack some jokes, and try not to dig in there too deep about any part of my illness.  I've tried before, because it's just such a huge part of my life and I wish he could understand - I wish anyone in my life could truly understand - but I am grateful for the basics here.  I think we do have to remember how hard it must be for a loved one to witness this second-hand.  We feel helpless, and they feel doubly helpless for that. 

Sarita, Right back at ya!  I thoroughly enjoy following your adventures.  I especially loved the story of your trip to your new home and the frequent stops for roadside evacuations!  One thing I've noticed about you - you maintain your sense of humor no matter what!  That is so important.  The people I am closest to are the ones I chuckle with when the going gets rough.  They are also the ones I cry with.

I just wanted to add that I've come to realize over the years that it may be unreasonable for me to expect people to fully understand the suffering involved with IBS.  For one thing, it's a condition that even medical science can't understand or explain.  At one time, it was considered nothing more than "nervous stomach", thus implying that it was the result of something the sufferer must be doing to themselves through anxiety or worry.  Or perhaps, with a dx of "lazy bowels", the sufferer might be eating poorly or not exercising or drinking enough liquids, thus implying that the sufferer must have caused the condition.  Now, we are hopefully moving away from the "blame the patient" mentality, but gut problems, like anxiety conditions or chronic pain issues can be baffling and confusing for most people.  I highly recommend the book The Second Brain, by Dr. Michael Gershon.  In it, he thoroughly dismantles the argument that this condition is somehow the result of something the patient is doing wrong.  It's very technical, but worth the read.

To conclude, I try not to expect too much from people because I realize they can't understand and that their feelings of helplessness must lead them to frustration and impatience.  Dealing with anyone who has a chronic and long term illness can test even the greatest of saints.  In the last few years I've tired of talking about it myself and prefer to curl up like a dog in the corner licking her wounds until I feel more human.  I am blessed to have a rich spiritual life and I find great comfort in prayer so I'm not really alone. :-)   And of course, I have all my brothers and sisters on this forum!

Posted 11/17/2007 3:23 PM (GMT 0)

That is so great gutastrophe :-) I suppose we can only hope that in the generations to come, doctors will finally figure out what the mystery is so that our great+ grandchildren will not have to suffer as we have. That is mostly what I pray for. I think back to the times when the flu would wipe out entire villages and look at us now...all kinds of drugs and shots to prevent people from suffering as long, not to mention keep them from dying!

I think another important thing to consider is that even though we might have more extreme conditions than most, we are not the only ones out there who ever get gas, bloating, D and C. What I try to do now when I feel a little rumbling in my intestines is tell myself "well, at least they are working in some way!" If there was nothing going on at all I'd be in trouble! The important thing is to keep a sense of humor, positive attitude and find strength within yourself. I mean, we take care of ourselves in so many other ways, this is just another context.

What I find equally important is when you are having a good day, always remind yourself of that day when it gets rough. That way, you have some kind of "proof" that you do have good days as well. I will admit that I am currently working on this and have been doing better. It is not easy because after all, IBS impacts our lives in many ways and it's hard to ignore that. But, no one can help me but myself, and even then I am limited in doing much. The GI tract has a mind of it's own, and as gutastrophe says, psychology can only go so far in explaining chronic bowel disfunction and inconsistency. I am so fed up with hearing and reading people tell me that with yoga and meditation it will go away. Please...I practice enough calming and spiritual methods to send me floating like a cloud, but I still do not have perfect "balance". As long as we are trying, that is all that counts I suppose.

It is so nice to hear of others' positive stories and advice. And speaking of other people not being perfect either...my boyfriend frequently has G and when he goes #2 he always makes a joke of it. Maybe to make me feel better, but also just because in that way, he is your typical "guy" tongue . I remember one night, we were sleeping and he was letting out some of the most blasphemous G I have ever been exposed to, worse than any I've ever let out!!! It was so bad that not only did it wake me up, but he woke up choking on the fumes! It was the best thing ever yeah I was thinking, "Yes!! HAHA, I'm not the only one!" Don't get me wrong, I was really wanted a gas mask at the moment, but it was still a funny situation :-) . You'd think he would be embarrassed in the morning and play it off, but he said to me "I had the meanest most powerful gas last night! Did you smell it?!" I just smiled and said, "yeah." If I have a bad night and know about it, I just don't say anything. If he makes a joking comment in the morning (not to tease me per se, just to make light of it) such as "Man, you were lettin' 'em out last night" I just say, "I'm thrilled" and he laughs. Or I just cutely shrug and say "Sorry, I was sleeping!" The thing about him is I know he tries to make light of the situations or joke about himself to make me feel more normal. I love him for that.

Well, that's enough G and #2 info for today!

Posted 11/17/2007 7:29 PM (GMT 0)

nickic said...

What I find equally important is when you are having a good day, always remind yourself of that day when it gets rough. That way, you have some kind of "proof" that you do have good days as well. I will admit that I am currently working on this and have been doing better. It is not easy because after all, IBS impacts our lives in many ways and it's hard to ignore that. But, no one can help me but myself, and even then I am limited in doing much. The GI tract has a mind of it's own, and as gutastrophe says, psychology can only go so far in explaining chronic bowel disfunction and inconsistency. I am so fed up with hearing and reading people tell me that with yoga and meditation it will go away. Please...I practice enough calming and spiritual methods to send me floating like a cloud, but I still do not have perfect "balance". As long as we are trying, that is all that counts I suppose.

Yes, absolutely.  In fact, it's essential for me to "carpe diem" when I am having a good day.  I can pack an awful lot of activity in a few short hours of a pain-free day!  And it's vital to stop and recognize that I am actually experiencing relief from symptoms, even if it's only for 2 hours.  It's also important for me to let others know when I am feeling good.  I may call an old friend and spontaneously suggest a movie or a cup of tea.  I might grab my keys and head out the door for a few hours of shopping.  Or I might just sit and reflect on my gratitude for a break from the pain.  It's an excellent reminder that, while it might not be the perfect balance I want, there is indeed some balance to life.

As an aside, I no longer engage in discussion with folks who suggest such things as yoga or meditation.  They can't know how many treatments and therpies I've tried and so I can't really blame them for for naively trying to help.  And I don't want to subject them to listening to the litany of "approaches" I've taken for this condition.  I just smile and nod, like the village idiot, and go on my way!

Posted 11/17/2007 8:24 PM (GMT 0)

gutastrophe said...

And I don't want to subject them to listening to the litany of "approaches" I've taken for this condition.  I just smile and nod, like the village idiot, and go on my way!

Thank you!! Perfect description, that is exactly how I feel. As they drone on with suggestions and "expertise", you simply let out a deep internal sigh. I like to relate it to the "wa wa wa" from the teacher in Peanuts gang.

Aside from that, I agree with the "carpe diem" description. I get such a rush when I am feeling normal. Like I am Leo DiCaprio from Titanic screaming on the edge of the ship. Unstoppable. I also call up family and tell them "I'm normal!" But like I said before, nobody is completely "normal" anyway. It's important to remember that. Especially since most people are so hush hush about G, D and C. I mean for crying out loud, how many commercials have popped up over the last 10 years starting with "Nobody likes being/having diarrhea/constipation...," followed by, "For fast, immediate relief..." If everyone else were so normal, there wouldn't be so many drugs and remedies for regularity and proper bowel function.

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