Digestive (Gastrointestinal) Problems
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I have PBC ,Diabetes insulin dependent, cancer Breast, thyroid Disorder, high Cholesterol, High Blood Pressure, I amazing I am still alive. My Liver symptoms are worsening, I lost some of my appetite, itch like crazy. I have both on my right and left up an under the rib cage, due enlarged liver and spleen. Infection is treated about every two months. Most likely bladder infections or kidiney. Have sores on skin, this is due spleen not working well so immune system is very weak.
I had a colon interposition 7 years ago after a doctor punctured my esophagus during an endoscopy. Had he not ignored my complaints of severe discomfort following the procedure and then sent me home it might have been an easy fix...but the timeframe between the puncture and my husband finally getting me to the hospital was such that my esophagus disintegrated entirely. By then I had developed sepsis and was dying. Very long story, including being unconscious for ten days, two-plus weeks in intensive care and 30 days total in hospital. Another 5 months sans esophagus, food and medicine via tubes, with bag for saliva on neck....etc., etc., finally ending with the colon interposition.
Following the colon interposition, I was told that the severe pain that wrapped around my back, over my ribs and beneath my breasts would last anywhere from three to five years, maybe longer, maybe not so long.
The pain on the right side subsided after five-plus years, the left side continues approximately seventy-eighty per cent of the time, especially at night, or when I've done something 'wrong', or a bra hits the wrong spot. I use Lidoderm, Vicodin and Lyrica to address this pain. Lidoderm when I need relief very quickly, along with Vicodin (hydrocodone since Vicodin is impossible to find in the United States outside of hospitals). I take the Lyrica (3) at night and (1) in the morning. I also take Ambien and Trazadone for sleep. The Ambien and Trazadone were prescribed before the surgeries for longstanding sleep issues. It is more critical since the surgeries because if the pain is unbearable I can at least go to sleep to escape the pain and usually wake up free of pain in the am.
The primary and very distressing side-effects of the colon interposition surgery are digestive. I have gas more often than I can begin to describe, but the worst is the diarrhea at night. I regularly wake up in a 'bed full' of excrement. I don't wake up when it's about to occur, nor when it's occurring but, rather, when I wake up in the morning. Of course, it can be worse if I eat later, which I mostly avoid doing, though dinners out can present problems. Red wine may or may not be a causative factor. Certain foods are givens for creating problems and I always avoid them: spinach, cream-based dishes/sauces, mashed potatoes (butter, milk), some cheeses, not all, tomato sauces, lattes too late, potato chips before bed (grease?), but not earlier in the day, and others I'm not thinking of at the moment.
Meats are better tolerated than vegetables and fruits. Even with red wine. Sugar in candy, ie, jelly beans before bed, are a no no. Black licorice - late, but not during day.
So. Primarily I need help with addressing the diarrhea issue. The pain in the ribs and around my back has been somewhat alleviated by exercises that stretch and expand my chest and strengthen my back and core. Exercise also strengthens me psychologically and emotionally. Periodically, the pain comes back with a vengeance and is 'breath-stopping'. And even tear-producing.
But nothing can compare with getting up day after day to clean up myself and my bed (sometimes my preparations just cannot anticipate the mess that can occur). It can take an hour or more and that doesn't include doing laundry. I may have to shower two-three times or use the bidet several times, change my clothes twice or more. Thank goodness I insisted on a bidet when we renovated our house eleven years ago. It is a lifesaver.
The emotional, psychological and physical tolls this issue takes on me are huge, huge. My marriage has suffered overall, but in particular as a result of the diarrhea problem. Sex and intimacy are long gone. I can't deal with either. My husband complains mightily. It doesn't matter. I'm a hermit, play-acting with friends and his family when necessary, and just plain anxious and depressed otherwise.
I've always been anxious and depressed, but ....... Life now is so 'sub-optimal' that the old days would be welcome as an alternative.
Anybody out there have any thoughts you would like to share that might be helpful? Anyone else with these issues resulting from a colon interposition?
Is anyone taking Remicade (especially for ulcerative colitis)?
What doses and how frequently?
How long, how many years have you taken it?
Is the rejuvinative affect waring off?
My father is 73 years old and has type 2 diabetes. He underwent GJ (gastro-jejunostomy i.e. gastric bypass surgery for a peptic/duodenal ulcer ) about 25 years ago. He feels completely washed out and totally weak every time he empties his bowels or a full bladder. He also suffers from hyper-salivation and noone has been able to identify the reason or provide relief. Any thoughts or help in dealing with this are highly appreciated. Thank you.
I have just had a scope procedure done and am frustrated as it came back normal and yet I am not normal. For over a year I've had horrible indigestion, excessive painful gas, constant stomach and chest pain, often nausea and chills if I overeat. I have not had a gastric bypass but I feel like I have. I tried Nexium daily for months and it did very little to nothing. Zantac, Omeprazole, Tums, complete change in diet.. none of these have helped. The pain doesn't come and go it is all the time but worse after eating. It is also worse if I skip eating. My diet cannot get any more correct for acid issues and I don't know what else to do. I'm also now broke after paying for this $1100 procedure that turned up zilch. I am in my early 30s, a little overweight... about 175 last I checked and 5'6. I am very active and do not sit all day at work. I do have a ton of stress, but I think I manage it pretty well. I don't exercise but I did before all this started and I want to, just can't work out when in pain. This is why I've become overweight this year. I am a non-smoker, and my only medical issues have been occasional abnormal pap smears/ovarian cyst issues and fibromyalgia. Only meds I take are birth control. Someone please help as I don't know what else to do now. Dr. is prescribing more Nexium, but I've been down that road.
I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).
I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?
Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!
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