Irritable Bowel Syndrome (IBS) Support Group
Irritable bowel syndrome is a common intestinal disorder that is characterized by bloating, abdominal pain, diarrhea, cramping, and constipation. Typically no abnormalities appear during standard medical testing, and so irritable bowel syndrome is identified by the symptoms. Although irritable bowel syndrome can cause serious discomfort, the intestines are not harmed.
I have been a long time sufferer of IBS and Gastroperesis. It started when I was a teenager and has gotten worse over the decades. GI doctors say I am on the verge of hitting IBD status, though they never seem to have a solution as to prevention of this.
I have had 18 inches of colon removed due to tissue damage caused by it twisting upon itself.
I just found out I have developed a Rectocele (Rectal Wall Prolapse) due to the straining from chronic (and horribly painful) constipation. I am seeing a urorectal gynocologist soon, to discuss possible surgery.
Also dxed recently with EPI (Exocrine Pancreatic Insufficiency), for which I have yet to receive treatment. I have bouts of hypoglygemia (not diabetic) and anemia as well.
I am on Linzess and Cytotec and many different vitamin & mineral supplements. When it gets bad I take one or more of the following: Dulocolax, Miralax, Phazyme, and IBgard. I have not been given anything for pain, as RX pain meds cause constipation. When it gets unbearable I take a sleep pill, because I don't know what else to do.
I have been in and out of the ER repeatedly, mostly with pain that has me crying on the floor in the fetal position. I have had pretty much every abdominal exam and test available in my state, some of them more than once. But they never show anything abnormal. I am injected with a pain med and sent home every time. For this reason, I see no point in going in anymore.
I have been to dozens of doctors and feel like I should be on the Mystery Diagnosis show or something, because what I have is so complex that I have doctors baffled. They just keep shuffling me around to different specialists. Each time, I wait weeks to months to get in to see the next doctor. This has been going on for many years. The wait is excruciating at times. I am stuck in bed, in the house, and/or in the bathroom nearly every day for the past few years.
My sex drive is nearly gone, because my stomach is always upset, in pain, bloated, nauseated, gassy, constipated or runny, etc - which all makes me feel gross and uncomfortable. My husband says it is ok and that he understands, but it is killing me to lose that connection between us. I was not this sick when we met, so sparks once flew like crazy. He is so supportive, but I feel like a disappointment to him as a wife.
Some days the symptoms are so bad and the doctors are so baffled as to what to do for me that I wish it would just kill me. My life is really perfect in every other way - I love my husband and my family and our home and everything else. But I feel more and more as time goes by without a solution or end in sight, that I will never be able to truly enjoy life. I don't even know what I am seeking here or why I am bothering you all with this. Maybe hoping for suggestions, understanding, and finding people with similar experiences so I can feel less alone. Any stories, advice, or anything would be much appreciated. Just so so so frustrated. Thank you for listening.
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Well, our drought isn't broken but our gutter is. Got two big storms rigth after each other and, wait for it, a tornado warning.Now, I was already running for my go-bag when I heard thunder. The air felt wrong. The sky was getting a color to the west. Been there, lived that, time to hide.No funnel touched down but the radar indicated rotation, and boy was it visible from the ground. Different...
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Even worse... When I came back complaining to my PCP and demanding a GI referral, he made the comment that my headaches, IBS, and fibro are all psychological.
It's incredibly frustrating when your doctors dont' believe you but worse when they don't care to help you. I'm stuck at home a lot too. And sexual intimacy with my husband hardly exists.
Have you tried acupuncture? or seen a naturopath instead?
Your story sounds very much like mine, espeically in regards to symptoms and the toll it is taking on you, and the myriad of medicines: over-the-counter and rx. I can only go to the bathroom once or twice a week but I never feel empty. I spend every day of my life in pain, in the bathroom, waiting and hoping to go to the bathroom, nauseated, dizzy, hopeless, and/or depressed. I feel trapped in my own home. My digestive system is so unpredictable. There is no pattern - no reason. I feel like I am just putting band-aids on an open wound when I take meds for temporary relief (and even that is hard to achieve). I have been to dozens of doctors - each one in turn gives up on me and sends me on to another.
My last attempt at a specialist is June 1st (uro-rectal gynocologist) and if she shrugs her shoulders or offers a temporary fix, like EVERY other doctor I have seen, I am done with doctors. My next step will be a nutritionist, I think. Maybe I can add or eliminate foods in an attempt to lessen the symptoms. I have been trying to re-evaluate my life in order to accept that this illness (whatever it is) will probably be with me forever. I have to solve this and deal with this on my own, it seems. I have come to the conclusion that no one will or can help me. Somehow I have to learn to live with this. It all feels so hopeless.
I feel so bad for my husband as well. I feel like I neglect him, and he is so good to me. I tell him all the time that I am sorry that this illness has made me so distant. He says he understands and that it is ok. But I know it hurts him. It breaks my heart.
Thank you again for the response. It is good to know I am not alone in this frustration and darkness.
We are fortunate to have loving husbands. My husband too hates to see me up in the nite with pain. I have sciatica, post mascectomy pain syndrome, interstitial cystitis and IBD, not usually happening at the same time. I keep hoping and praying for more lifelines and will pray for you too, Wo Be Gone
I have suffered with IBS-C for 35 years which I learned how to manage with high fiber and water. But changed to IBS-.D two years ago. Was put on an anti-anxiety med last year for side effects of slowing motility and increasing appetite, which thankfully stabilized me during the last year.
But then.... I suffered a Diverticulitis attack two months ago requiring hospitalization with IV and oral antibiotics. This followed a month later with a milder second attack only requiring antibiotics.
Because my colon is so diseased (twisted and pockets) and I've had two attacks so close together, being advised to do the colon resection too. How was that? I'm afraid to ask or read too much about it.
My strength comes from my faith in Jesus Christ and knowing God is sovereign. i am continually asking for grace to cover my anxiety and grace for coping with this awful disease.
My best to you. Hope you can find relief and answers!