Tired of feeling like IBS is your fault?

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Normal
Regular Member


Date Joined Mar 2008
Total Posts : 263
   Posted 4/5/2008 6:37 AM (GMT -7)   
OK after all these years of feeling like I did this to myself not coping with stress etc. I realize it is an intestinal disorder that I cannot even be in control of. SO NOW I AM READY FOR EVERYONE ELSE TO KNOW THIS. I am so tired of being treated like I AM IN THE WRONG for having this, or it is my fault just deal with it. THats another thing, DRS. saying we cant do anything,just deal with it. YOU CANNOT DEAL WITH CHRONIC D. SO I am going to try next week while on FMLA to get something going locally with a support group. THAnks for suggestion jtauras. It would be alot easier if there was a national one. Does anybody know of one? WE have just gotta raise awareness, funds to find reason and cure. I did not realize how many people had this.Does anybody else feel like thy are hitting a brick wall trying to function with this?

Normal
Regular Member


Date Joined Mar 2008
Total Posts : 263
   Posted 4/5/2008 6:54 AM (GMT -7)   
now I am replying to myself. That was a stupid post. Got on computer and realized that there are alot of groups out there I just got to find one. It is so nice outside I need to get off this thing and get outside.

Lady Frog
Regular Member


Date Joined Feb 2008
Total Posts : 139
   Posted 4/5/2008 6:56 AM (GMT -7)   
For the first few years, and even recently, I was convinced that something I did was the cause of all of this. I am going through this now because I was an idiot as a kid and drank stream water when I was thirsty? Was it because I lived off of fast food my first two years of college? Did I do something wrong and is this karma coming back to kick me in the butt? My ex didn't help by insisting that this was all in my head and that I was making things up to get attention. But thanks to my husband I have come to grips with the fact that this is a malfunction. This is not something that could have been prevented, this is not something that can be cured. Just treated and hopefully managed so that I can live a relatively normal life. He does get frustrated when I can't do things without planning ahead, or when I cancel plans but he doesn't hold it against me. Just grumbles a little bit and then goes back to his usual self.

I dealt with this for three years with no meds or other special treatments. I lost my job, I nearly failed school, I lost friends who never understood. I did gain a husband though who has stood by me through the worst of this and let me know it's ok to be sick. It's ok to feel like crud and tell people "Nope sorry, can't go." and not feel guilty. He always tells me it's not my fault I'm sick, it's my tummy causing all the problems.

Normal
Regular Member


Date Joined Mar 2008
Total Posts : 263
   Posted 4/5/2008 8:38 AM (GMT -7)   
Thank you so much frog lady,Im really struggling right now. Cant even go to store. Lost my first husband after 22 years to cancer,10 tears ago. Met a great guy 2 yrs. ago, but he is ready for me to enjoy life and not worry about this. I cant when I feel so bad. NOw they want me back on DONNATAL. Having liver problems. Read insert and not suppose to take if liver problems, probably caused it when I took it for years before. I also have hiatal hernia and it says DO NOT take with that. When I tell DRs. I dont want to take medicine bcause of effects they get really irritated, tell me I dont have a choice. I just want to stay home and take immodium occationally when I have plans. I am really scared I am hurting vital organs with all the meds. Why cany anyone understand that? Medicine was NOT made to take on a regular basis. IT DAMAGES EVERYTHING! So I have to choose between working and having medical ins. and causeing other serios problems or not taking medicine and not working and living longer with no funds. IM ready to just go to DRS. office everyday,all day, and let them SEE how I feel. Im really getting frustated. Was gonns take this med. and go back to work but Im not gonna take something just so they can say WE HELPED YOU then 5 years down the line when my liver and kidneys(having problems with both) fail I put myself and family thru H---. SO im gonna go medicine free like I have for 2 weeks and lived in bathroom and when I go back to work they can fire me for having to leave all the time cause I just give up. This is not my fault and I do not have to take bad medicine so that Drs. dont have to dael with it! Man I am really bad today, I should just go. Yesterday I was so up thinking this Donnatal will help me for a couple of years like 5 years ago, then realized after reading it that it hurts me in other ways. How does that help me? I love the part that says REMEMBER YOUR DR. has prescibed this because he believes the benefits outweigh the adverse effects. So it may kill you in a couple of years but hey you can still work now, whats your problem with that? Ill tell you my problem with that> I lost my brother to Hepititus from blood transfusion during sugery in 72, 20 years later 92 . Liver failure is a SLOW AGONIZING DEATH and I will not cause it. I also lost mom, husband,and alot of family to long terminal desease. It was GODs decision to do this, but if I let them give me all this medicine I will make that decision.OK guys think my next appointment will be with A mental health DR. cause I seriously think I am losing it.Im not going to tyoe anymore responses, just read from now on till I have alittle more control. redface

hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 4/5/2008 9:23 AM (GMT -7)   
I am sorry you are having so much trouble. I feel like my stomach problems are taking over my life also. I think alot of people do here. It isn't fair. I feel like no one can tell me exactly what is wrong with me. I was told I have UC and probably IBS and I just went to urgent care a few days ago because my stomach(higher up than my normal pain) hurt so bad I hadn't slept for days. They did a ultrasound and said it wasn't my gallbladder or anything serious. They gave me prilosec and I almost started crying in his office because I felt like he just gave up on me. I thought maybe I really had crohns and I was having a blockage or something. The prilosec actually worked though so I guess I have gerd also even though I have never had heartburn in my life. I guess it is from the 20 pills I have to take a day. And that scares me more than anything also. I am on the max dose for a couple of meds and you wonder how they might interfer with each other and what else they are doing to your body besides what they are supposed to be doing. And then I wonder if they are even doing what they are supposed to be doing because I'm still sick and I am going to be for the rest of my life. I feel like I have only gotten worse since my first visit to the doctor.
Jessica 26/F
Asacol 4pills /three times a day(from 2 pills/ three times a day)
Culturelle once daily
Tried (Entorcort EC 9ml/day and Prednisone)


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 4/5/2008 9:25 AM (GMT -7)   
and it isn't our fault - don't fall into that trap- but it is so hard because we have to deal with it..........I know everyone has there own set of problems - but I wish mine didn't involve my health.
Jessica 26/F
Asacol 4pills /three times a day(from 2 pills/ three times a day)
Culturelle once daily
Tried (Entorcort EC 9ml/day and Prednisone)


gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 4/5/2008 9:42 AM (GMT -7)   

Hi Normal.  Well, perhaps we need to take a deep breath here and look at the issues one by one.

You did not cause your IBS.  Just give this one up, ok?  We ALL go through this period of self-recrimination.  Unfortunately, the medical community and the general public reinforces this myth because of a lack of education.  I have been saying for years that we need a fund drive for IBS - a 10K walk perhaps or some ribbon campaign.  It looks like it's going to be up to us to educate our friends and family.  When you feel like blaming yourself, ask if you would do this if you had diabetes or psoriasis or leukemia.

I did a bit of research of Donnatol.  The literature seems to imply that there is one particular liver problem that would preclude you taking it.  I am wondering if this is the condition with which you suffer (a certain blood/liver problem called acute intermittent porphyria).  Have you spoken to your doctor specifically about this?  It may be that, with proper supervision and intermittent testing, you might still safely take this drug, if it helps you.  The question would be, does it?  I don't have IBS D but I used to take hycosamine.  I was never helped by it.  Perhaps your experience is different.  Beyond all this, if you are still uncomfortable with this med, have you seen another doc?  Have you tried anything else that might provide some relief?  Certain anti-anxiety drugs can also calm the nervous system and bring about similar results.  While these carry their own warning (habit forming), they can be beneficial when used as needed in the short term.

Taking meds on a regular basis is something many folks have to deal with in their lives.  I was recently told that my cholesterol is sky high, despite what I consider to be a very healthy diet.  In my case, this runs in my family so it's doubtful I can control it with only diet.  My doc, whom I trust, prescribed a statin which I may have to take for the rest of my life.  I'm not too happy about that, but yes, in this case, the benefit outweighs the dangers.  I don't want to die of a stroke. 

I also have a severe case of Mitral Valve Prolapse.  Dx in 1980, I've been taking beta-blockers for 28 years.  MVP, like IBS, is not a life-threatening disorder YET it completely upsets my daily life by causing me tremendous stress and anxiety.  Side effects of long term use of beta-blockers are not catastrophic, but, like you, I was not thrilled with the idea of taking meds for the rest of my life.  But here I am, 28 years later, still taking them and very grateful that they have controlled my symptoms and allowed me to live comfortably.

With my IBS C, I take herbal supplements every day.  At least once a month, I take magnesium citrate to control chronic C. In the past, I have taken EVERY med available to treat this condition.  For years, I took a med called Propulsid, which I considered a miracle pill.  They pulled this drug off the shelf because of sudden deaths.  I was devastated when this happened as I was thrown back into the cycle of intestinal unpredictability that is IBS. I took Zelnorm, which was also pulled off the shelf.  I've taken all the anti-spasmodics, anti-depressants, anti-anxiety meds on the market.  I've taken daily laxatives and naturopathic treatments like colon hydrotherapy.  We do all these things in an effort to improve the quality of life.  Some things work for awhile and then quit.  Some things don't work at all.  I've rarely stayed with a med long enough to do any long term damage.  With IBS, nothing seems to work that long.  Until medicine comes up with something effective and safe, we will all spend time and energy experimenting with ways to live more normal lives.  Some of these treatments (like Immodium in your case, or mag citrate in mine) are not unsafe when taken occassionally. 

While I know it is infuriating to deal with this condition, we also must remember that the more exasperated we become, the worse our symptoms get.  At this point, I don't even care about the origins of IBS.  It's the chicken and egg argument.  But I do know that the more anxious and stressed I get, the worse I feel.  Coming to this message board brings me much solace and peace.  I've gotten more from the fabulous members here than I ever got in 15 years of therapy!

Stick with us, Normal.  We're here for ya!

 


Normal
Regular Member


Date Joined Mar 2008
Total Posts : 263
   Posted 4/5/2008 10:20 AM (GMT -7)   
thank  you all so much I am just having a melt down. I know dont have a choice with meds. thats gonna be my next goal. To try to get the medical to acknowledge this is A serious problem. Gonna make my fiance take me out on HARLEY yeah I can be comfortable with him and it does some serious relaxing which I need. Thank you so much for reminding me of this. BIg hugs to you for making me feel better.

gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 4/5/2008 10:42 AM (GMT -7)   
GOOD FOR YOU!  And I am going to go to the kitchen and bake chocolate cupcakes!  Cupcakes always make the world a better place!

Lady Frog
Regular Member


Date Joined Feb 2008
Total Posts : 139
   Posted 4/5/2008 12:20 PM (GMT -7)   
I think the best thing about this website is that we can come on here on a bad day and rant away. And everyone can understand. There are days I never want to take pills again( on belladonna) and there are days I wish they would just remove the whole kit and kaboodle and be done with it. My one doc seems to be test crazy and wants me to go to yet another specialist because in her mind the previous two didn't do enough. I'm going to go to make her happy as well as the original specialists never did do all the tests. But I am going to ask that he keeps them to a minimum. False hope never did anyone any good. Plus I think that our guts can get used to a certain treatment and we need to shake things up a bit to get them working semi properly again. I have notice that if I am taking my pills alot then they don't work as well. But I take a break( usually after a shopping spree at the bookstore for things to keep my mind off the fact I spending more time in the bathroom then out of it) when I do take them again they seem to work better, last longer and generally let me be me again.

It's beautiful out right now and the ole' tumtum is being a pain and keeping me inside. But I have all the windows open and I am going on a shopping spree( love the internet) for some gardening supplies. I know that if I managed to make chocolate cupcakes here, my husband would be one very happy man indeed!

Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 4/5/2008 2:36 PM (GMT -7)   
gutastrophe said...
GOOD FOR YOU!  And I am going to go to the kitchen and bake chocolate cupcakes!  Cupcakes always make the world a better place!
Hey, another cupcake lover. My Mom made the best cupcakes with the big like muffin tops on them. MMMMMM-so good. Anyway, back to thread. Please don't feel like you brought this on. This is something that those of us that have lung disease deal with all the time because as soon as someone finds you have a lung disease they say "did you smoke?" Well, yes, and so did most the people of my generation but not all lung disease is from smoking. At least with Ibs there is no way it is something that you did. Could it be something that you are still doing, yes, but that is where the trial and error, diet diaries and different meds come it but don't feel guilty over something you have no control over. It will only make you feel worse emotionally and physically.

jt80
Regular Member


Date Joined Sep 2007
Total Posts : 333
   Posted 4/9/2008 7:48 PM (GMT -7)   
Yes at times I feel I've brought this on myself cause with me it started with drinking bad tap water cause the first apartment that lived in the city where I lived had bad tap water.That's where all my troubles started and I was working at that time I had so many bad episodes concerning my stomach at work.I did not know what was going on with me I was so embarassed I finally made it to my doctors gave them stool samples then they came back where they found 5 different types of bacteria and parasites.That is what started my having IBS after taking the antibiotics which stripped me of the good bacteria in my stomach and digestive system.It was down hill from there for my digestive health,I blame myself if I only did not drink the tap water.Now I have to deal with IBS yes and I do get mad when my GI doctor says this is something you are just going to have to deal with,I do not want to deal with it.But I do and I just get through the days alone,and I had a friend over for the night and most of the day.He knows about my IBS but does not really understand what I go through and while he was here I was having my symptoms act up and I felt embarassed.He was trying to make me feel comfortable about what I was dealing with,but I just wanted to be alone if it was someone else who dealt with IBS like me I would have felt alright about it.And I also wanted to eat but did not want to eat in front of him if I started having stomach issues.Then he finally left and I could feel relaxed in my own home again and just be with myself.I'm trying to feel comfortable around him but it's hard to cause I feel weird and grossed out over it.Other then that I'm just taking it day by day and trying to improve my digestive health to trying to get it back to healthy.I hope you all the same health take care everyone.

Easta
Regular Member


Date Joined Aug 2007
Total Posts : 124
   Posted 4/9/2008 11:43 PM (GMT -7)   
Why do we live in such a blame orientated culture? Health issues affect most of us at some time and it can't be profitable to attribute illness to fault. Yes, some smokers will develop lung disease but they don't smoke in order to get it. A lot of them need the solace and relaxation that smoking brings - perhaps because of stresses and strains in their lives. It is no good saying such things are faults. Support is what is needed. Support and research by medics to alleviate many conditions that people have to endure.

Blame, either directed at yourself or others, is a negative and totally counter productive thing to do. This forum is great at lifting people when they are down and offering constructive comment when requested.

Good luck in your fight against this condition. Try to keep positive and draw those around you who care and don't seek to be judgmental.

kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 4/25/2008 10:31 AM (GMT -7)   
I understand your frustration with meds and side effects. I try to think of things this way: I can take meds now and 90% chance I will feel better, be able to live a full life, be pain-free, and have 5% risk of serious problems 10 years later; or I can not take meds, have 100% chance of staying miserable and in pain and a chance of having future health problems later on anyway from something unrelated. I have chosen to take the meds now. Only you can decide what risks you want to take, and weigh the pros and cons yourself. I think doctors are confused when a patient doesn't want to take meds. And I can understand why. If you don't want to take the medicines, which is the only treatment he has, then what exactly do you want from him? Let him know. If its just support and education and information, let him know that. Hope you're feeling better soon.
diagnosed 11/06, solving the mystery of years of on/off abdominal pain. No more "it's just a virus". 33f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bowel resection 9/07. Tapered off entocort 1/08 and feeling the effects with fatigue, pain, D.

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