Living with IBS
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ReverendJim
Posts: 260 Member
My doctors don't know what is wrong with me. Some of them just look at me funny when I start telling them how serious it is - how it's totally altered my lifestyle and how it's impacting (even severely threatening) my job. Last week, I had to drop out of my carpool, a decision that will drain another $100 a month out of my budget... Every test is coming back negative. My doc says I have the colon of a 30-year-old (I'm 47.) No inflammation anywhere. No reason for the symptoms I'm having. It's very frustrating, especially when I'm told "it's all in your head."
For the moment, I've given up on the doctors and I'm just dealing with it. I did not join MFP to lose weight (although I could afford to lose 30 pounds) - I joined it because I was looking for a good, motivating way to keep a food diary, to make better choices with regards to my diet, to start exercising regularly, and to hook up with others who suffer too. There is strength in numbers and maybe other could learn from me, or I could learn from them.
My first GI said: "Lower your stress, eat wisely, keep a food journal and exercise for 30 minutes a half hour after your largest meal of the day." Well.... duhhh. I was already doing that. And the only stress I have IS this condition ... which they are calling IBS, since they can't pin anything specific to it. The frustration part is that I'd almost - ALMOST - rather actually HAVE a named illness, because then I would know more about what it is, how to combat it, how to live with it, etc. Instead, I have a "syndrome" and I'm told it's all in my head.
For the moment, I've given up on the doctors and I'm just dealing with it. I did not join MFP to lose weight (although I could afford to lose 30 pounds) - I joined it because I was looking for a good, motivating way to keep a food diary, to make better choices with regards to my diet, to start exercising regularly, and to hook up with others who suffer too. There is strength in numbers and maybe other could learn from me, or I could learn from them.
My first GI said: "Lower your stress, eat wisely, keep a food journal and exercise for 30 minutes a half hour after your largest meal of the day." Well.... duhhh. I was already doing that. And the only stress I have IS this condition ... which they are calling IBS, since they can't pin anything specific to it. The frustration part is that I'd almost - ALMOST - rather actually HAVE a named illness, because then I would know more about what it is, how to combat it, how to live with it, etc. Instead, I have a "syndrome" and I'm told it's all in my head.
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i have ibs and i have noticed that taking pobiotics and fiber daiy do seem to help and has made it way more managable i hope it works for u and i know how u feel
you r not alone and good luck:bigsmile:0 -
Trust me you will hear that forever, my mom has Crohn's and since she was 19 she was told it was all in her head and that nothing is wrong with you etc etc. Doctors refuse to believe that anything is wrong. Now my mom is 42 and she had to have major surgery because she had an obstruction the size of a grape fruit in her colon and even then they were still convinced that it was her appendix. Therefore she had her appendix taken out and then had bag for 6 months followed by a second surgery to reconstruct her colon. I have come to the conclusion that doctors are idiots, well not all. Maybe just this particular doctor lol. Not to totally bash doctors at all! My bad!0
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i agree it is very hard to find good doctor and i hope ur mom is doing betterTrust me you will hear that forever, my mom has Crohn's and since she was 19 she was told it was all in her head and that nothing is wrong with you etc etc. Doctors refuse to believe that anything is wrong. Now my mom is 42 and she had to have major surgery because she had an obstruction the size of a grape fruit in her colon and even then they were still convinced that it was her appendix. Therefore she had her appendix taken out and then had bag for 6 months followed by a second surgery to reconstruct her colon. I have come to the conclusion that doctors are idiots, well not all. Maybe just this particular doctor lol. Not to totally bash doctors at all! My bad!0 -
She is doing a lot better! Thank you!0
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For years before my diagnosis of Crohn's, I must have been to every doctor in the Dallas Fort Worth area. They did tests which came back negative. To appease me, they put me on all these antiboitics which helped for a week or so and then the pain and fever would come back. Every doc said it was in my head along with my ex-husband. So then came the antidepressants which of course didn't make anything better except a false sense of happiness. And I had then lost 75 pounds putting me at 90 pounds. But according to the docs...nothing was wrong.
Fortunately, when we moved to Colorado, I went to a family doc. He listened to me and referred me to a great GI doc. And I was able to get in the next day. Within 2 weeks and a few tests later, I was diagnosed. I was put on all the fun meds that goes with Crohns. I stayed on the meds for about 3 years and then I went off of them by my choice. I stayed in remission for 8 years. One reason...i got rid of the stress in my life..meaning...my now ex-husband.
I came out of remission about 3 years ago. I was put back on the drugs but had to come off them not long after because it was causing kidney damage. Some days were good some were really awful. In August of this year, I went to a new Doc who is a naturopath doctor. I wanted to go in a more natural way of controlling my illness. I have been on a couple herbal supplements and some plant enzymes. It has done more for me than the drugs and none of the awful side effects.
I am not against Western Medicine, It just didn't work for me this last time. I have changed my diet, lost some weight and quit smoking. The combination of the supplements and a better lifestyle, I can say I am feeling pretty good. Granted when I get a little stressed, it does flare up but for the majority of the time, I feel great.
There is hope and a doc out there that will listen. Its not an easy journey but you just keep going and you will find what works for you.0 -
I've been doing better. But I know I can go a good stretch and then just go off the deep end. I am IBS-C rather than -D most of the time. But if I get stressed or anxious, I can just feel my bowels start to spasm and I know it's not going to be pretty. Nothing like that happened today, but it was pretty bad. I had a good day, at work, getting a lot done. I took lunch, as normal, with my disabled lunch buddies at our usual table. I had my wild rice chowder I make, and a granny smith apple. Within ten minutes after eating, I was running to the men's room with -D. I visited it six times, often urgently, over the next two hours. Made it very difficult to get any work done. Looking back on it, it had to be something I ate. Not sure. I looked at my food diary... I normally have a pretty strong tummy for spicy, vinegary stuff, so I don't know. I did notice that morning I was eating pickles, jalapeno-stuff green olives, nectarines ... LOL ... odd combination of stuff, but all good for you and not much of any of it. Wonder if that's what did it ... what a horrible day. But then, by the time I got home at 4 p.m., I was able to run/speed-walk on the treadmill for an hour. I HATE THIS CRAP! (No pun intended.) I just want to get well, so I can trust my own body and do normal things like having lunch without having to chart mental paths to the three closest bathrooms at any given time.
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I keep finding myself sliding more and more into gloom and despondency. Which, if you knew me, you would not believe. I've always been the life of the party. Always been the "Fixer," the one who comes in and makes it all right. This is feeling so out of control. This has been a very dark week.0
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I get a kick out of watching people on MFP stressing about how much or how little they can eat. While we worry about WHAT we can eat. I can not eat many of my favorite foods anymore... Sunday, I made a spicy curry chicken with spicy Indian rice (used brown rice) ... it cost me time off work this week as I was too sick to go in ... 0
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I get a kick out of watching people on MFP stressing about how much or how little they can eat. While we worry about WHAT we can eat. I can not eat many of my favorite foods anymore... Sunday, I made a spicy curry chicken with spicy Indian rice (used brown rice) ... it cost me time off work this week as I was too sick to go in ...
I too find it humorous about people getting stressed about food intake. There are days that I can't even think about eating or when I do I worry about if will be accompanied with pain. I soo miss spicy foods and dairy products. I can only go day by day. ^_^0 -
I keep finding myself sliding more and more into gloom and despondency. Which, if you knew me, you would not believe. I've always been the life of the party. Always been the "Fixer," the one who comes in and makes it all right. This is feeling so out of control. This has been a very dark week.
We have all been thru those dark times and the feeling of being out of control is a normal feeling. For awhile after being diagnosed, I felt totally out of control. I also felt so betrayed by my body not cooperating and food became an enemy. !5 years later, I am trying to take by my life and not let this awful disease control my life. Yes, I have bad days but I adjust and keep going. I refuse to let this cripple my life. And Rev, I understand how you feel. Don't let it this take total control of your life. Like everything else, you will get thru this. I am always around if you need to vent! :flowerforyou:0 -
I got a new doctor today. I was all excited. When I mentioned my symptoms and saw him put his notepad and pen down on his knee and raise his eyebrows, I knew I was in trouble. I got the same ol' same ol' - excercise more, take Benefiber, yadda yadda yadda. What part of "I've been doing that for a year" don't these guys get? Very disappointing.
Anyone have any experiences with digestive enzymes? I'm on Align Probiotics now, but thinking of trying digestive enzymes.
I did notice that I felt GREAT today! But that's because I ate only a small breakfast, then nothing for lunch at work. Normally, my afternoons at work are pure hell with gas and bloating and pain and bm issues. I hope I don't have to start skipping meals...that doesn't seem like the healthiest way to deal with it.
Again... enzymes? Thanks for your response.0 -
Like everything else, you will get thru this. I am always around if you need to vent! :flowerforyou:
I love you and I don't even know you. I do so appreciate your thoughts and the way you've shared with me, and allowed me to share with you. It means a lot to me and is very helpful. But don't worry, Jenna has my heart! LOL!
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Okay, my doc prescribed Bentyl (Dicyclomine, 20 mg.) He did it months ago and I only took it twice, felt light-headed (half stoned) and discontinued. I'm one to usually try to go the natural route. But now I'm getting to the point where I may try the meds. Anyone have any experience with this drug? Here's a handy compilation of user experiences: http://www.askapatient.com/viewrating.asp?drug=7409&name=BENTYL0
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Okay, my doc prescribed Bentyl (Dicyclomine, 20 mg.) He did it months ago and I only took it twice, felt light-headed (half stoned) and discontinued. I'm one to usually try to go the natural route. But now I'm getting to the point where I may try the meds. Anyone have any experience with this drug? Here's a handy compilation of user experiences: http://www.askapatient.com/viewrating.asp?drug=7409&name=BENTYL
I haven't taken that drug. I do believe that my son in law takes it. He has Ulcerative Colitis. I'll ask him if he is on that drug. I have been trying to get him to modify his diet but like most people he follows what the docs tell him. I guess I am beyond what my GI doc recommends. I really hate taking meds and try soooo hard to not take them.
As I have mentioned before, I take herbal supplements and enzymes. I am currently taking Bio-Curcumin Phytosome, Marshmallow Root and Slippery Elm. These seem to really help with the pain and eases the inflammation. The enzymes I take is Similase GFCF. This helps with the break down of food which also helps the digestive tract do its job with little to no pain. Usually take it before I eat and it really does help. These were all prescribed by a doc but you can get them from any health food store.0 -
Hi. Living with IBS, or whatever you might really have sounds awful. Can you find a better doctor. I have Crohns and know many who have it. I was so lucky to have a good doctor and hospital nearby. Maybe people go through years of no-diagnosis and pain....0
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A lot of people with these illness don't get diagnosed right away. For me it took 5 years from the first symptoms showed up. Every doc I went to pretty much implied it was all in my head. But with determination, I kept looking for a doc who actually listened.0
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I've been taking Bentyl for over a year to help with cramping from Crohn's. The main side effects of it (light-headedness & nausea) kind of suck at first but your body will get used to it. I don't really feel any side effects. Most days I wouldn't be able to function if it wasn't for the Bentyl. Maybe see if you can start out at the 10mg dose at first and work your way up to the 20mg if you feel you need it.0
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Thanks for weighing in on Bentyl, and please keep the comments coming. I am not one who likes taking medications and I'm trying to beat this naturally, but running out of time and getting desperate. I quit smoking using hypnosis, so tonight I bought a hypnosis program for IBS. My IBS pain and symptoms (like yours) are very real, but I do know that some of the triggering mechanism is in my head. Bowel urgency is the worst part of it (to me), and I've had some episodes of that that didn't end well. So now I'm paranoid anytime I'm not near a bathroom. Even a meeting at work where I know and trust everyone can throw me into fits of pain and urgency, just knowing I will be away from my comfort zone (my desk) and away from a bathroom. I'm hoping maybe the hypnosis can help, and I will be happy to report back on that. Anyone tried using hypnosis? I know it worked amazingly well for my smoking problem. 30 years of smoking and I'm smoke free. But that, also, is what triggered my IBS crisis.0
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I get a kick out of watching people on MFP stressing about how much or how little they can eat. While we worry about WHAT we can eat. I can not eat many of my favorite foods anymore... Sunday, I made a spicy curry chicken with spicy Indian rice (used brown rice) ... it cost me time off work this week as I was too sick to go in ...
I can relate to everything 1000% percent. I have IBS-C and UC. I can't eat many of the foods I used to love and contrary to popular belief, I CANNOT eat high fiber foods (they make the -C worse and cause major bloating) I also can't eat the commonly touted whole-wheat type products, they make everything worse. I'm also now, lactose intolerant. I'm not often hungry because about 75% of the day, I feel full.
I was very social and outgoing before I started developing all of my issues, but that's all changed too. Now I don't make plans, because they often get thwarted by not feeling well. I think friends started to think I was making excuses so I didn't have to show up. But I find no one really understands unless they have it too. Sadly, it's not something people want to admit, so it can be all too common to feel alone with this illness. It's not all in your head. I'm here too if you ever need someone to lean on.0 -
Bentyl is one of the meds I've been prescribed. Usually the initial symptoms don't last long, so if you can try it (maybe for a weekend at home?) see if it'll ease up. I have IBS-D, they diagnosed it as a post-operative condition (started exactly 7 days after knee surgery, so I'm kinda agreeing with them!) and I have a few things to tell you. First, you need a gastroenterologist to rule out Crones or UC. IBS is a disorder that is often diagnosed because none of the other known GI ailments are found. My old PCP first treated me 3 times for H. Pylori before sending me to a GI specialist who in turn ran the proper tests and diagnosed me.
Something to realize- IBS can cause anxiety when it flares up. Unfortunately, anxiety can cause a worsening of IBS symptoms because of the chemical response your body has to stress. Either learn some relaxation techniques for when you feel the D coming on (often times just looking in the mirror, into your own eyes and saying out loud "I'm okay" can ease some of it), or see if your doctor will proscribe something like Xanax or another mild sedative for those times when the anxiety is out of control. I'm dealing with IBS and Hypoglycemia, both are aggravated by anxiety attacks!
Otherwise, look out for what triggers your flare ups, and avoid those things if possible. Also, keep Gas-X and Immodium on hand, as they will be your new best friends! They don't help with the anxiety or the pain/discomfort, but sometimes just stopping the D and gas helps enough!0
