Hello out there. I'm so thankful for this group. It has helped me tremendously over the past couple of weeks to read stories so similar to mine and to be able to see such a supportive and welcoming group.
WARNING - my post is long and I do apologize but wanted to be thorough.
I am a 48 year old female diagnosed with IBS 23 years ago. I've had many urinary issues and would be on Cipro for multiple UTIs over the past 10 years. 2 months ago I had what I thought was another UTI (lower back pain, bladder pain, frequency, urgency, pain down both sides of my waist). I have the Cipro script on hand due to the numerous UTIs so I rarely get a culture and sensitivity done to quickly get over the UTI.
I took 4 different antibiotics in a span of one month because they weren't helping with the intense abdominal pain. I feel this messed with my immune system and caused either a flareup of IBD or actually caused my first IBD incident. I had only experienced this level of abdominal pain twice - one in 1991 when I was diagnosed with IBS and 8 years ago when gluten sensitivity was discovered. Routinely the antibiotic clears up the pain and I'm back to normal. I've been gluten free for the past 8 years and had no GI symptoms aside from the normal D up to 4 times per day.
This bout of pain in June, the 4 different antibiotics and the fact that nothing helped clear up my symptoms led me to think about IBD specifically Crohn's. The more I researched this disease the more I felt I could have it:
• Smoker 30 years
• Diagnosed with IBS at the age of 26.
• Mother and maternal grandfather had bowel issues. Mom – chronic diarrhea for many years, grandfather had colostomy
• Daily migraines 10 years plus. Took ibuprofen almost daily for past 5 years (know now that NSAIDs are not helpful)
• Get sores in mouth. Most recently had increase of sores over past 2 months on a weekly basis with a metal like taste
• Skin - white bumps around ankles for a couple of years and red rash on upper chest for past year, rosacea for over 5 years, 4 small red bumps like a blood blister on legs and arm
• Eyes – irritated, extremely dry, tears burn. Treated for glaucoma for past 6 years and newest ophthalmologist does not think its glaucoma and took me off of treatment drops. Vision has deteriorated greatly over last two years
• Ears – have had sores and dry flakey skin inside for over 3 months – bilateral
• Joint pain – past 2 months have had pain in right middle finger, bilateral hip pain in July and neck/upper shldr pain for past week, constant jaw and cheek pain for 2 days (diagnosed with fibromyalgia 20 years ago)
• Pain in 17 areas of my body (lower back, waist, perineum, anus, all 4 abdominal quadrants, both shoulder blades, under both breasts in a sweeping band motion, below both ribs and predominantly between belly button and right breast with all areas ranging from dull and crampy, to pressure-like lasting hours to sharp stabbing pain causing me to jump out of my chair at work up to 30 times in past 2 months.
• Two previous colonoscopies were extremely painful - worse than childbirth for me.
• Multiple UTI’s and take antibiotics (last 5 years - Ciprofloxacin) at least 3 times/year for entire life. Was on a low dose of Cipro for nearly a year to clear up resistant symptoms of pain in bladder and lower back. Understand that Cipro is sometimes a treatment for IBD and the pain could have been from GI rather than urinary.
• Buscopan (anti spasmodic) made symptoms worse at end of 3.5 week course of antibiotics in July
• U/s during past 5 plus years have shown “fatty infiltration of liver”
• Need to take imodium/pepto bismol almost daily for past year. Took it occasionally for past 10 years.
• Nausea usually in morning started a year ago but since June has been almost daily. Either feel full or nauseated for past 2 months after eating half of normal serving
• On bland IBS diet (soup, toast, clear fluids, jello, probiotic yogurt, rice, applesauce, eggs and bananas) from July 8th until July 28th – when trying to introduce any food that I tolerated before this episode my pain increased
• Extreme fatigue
• Chills almost daily since July but no fever – goosebumps on arms and legs
• When abdominal pain is bad have had tremors in hands and a feeling of shakiness inside, brain fog worsens
• Since early 1990’s have had loose stools, rarely constipation. Usually floats and has consistency and colour of wet sand.
• Prior to June/July have at least 2 loose bm’s each morning and 1-2 more loose stools rest of day. Since July have had increase to 7 loose stools even on bland IBS diet.
• Pale coloured stools like ribbons, short and thin – light green, pale yellow while on bland diet.
Saw a greatly incompetent internist in July that determined from my intake questionnaire only that this was caused by stress, its only IBS and do I have a history of emotional/depressive/anxiety disorder without hearing my symptoms. Said he'd do a colonoscopy if I wanted but since my last one from 8 years ago he knew he wouldn't find anything. Physical exam included grabbing at my abdomen with his big meaty hands and pinching in 3 areas causing severe pain. It was by no means any type of palpation like a knowledgeable caring doctor would perform. His consult note indicated my vital signs and heart sounds were normal yet he never performed either of these exams on me.
U/s and xray were normal. Routine bloodwork has been normal (WBC and Sed rate). I asked for a c. diff test which I assume was normal since I haven't heard anything. Had to ask for a CT scan and will have it on Aug. 20th. Neither my GP nor the Internist did any other fecal tests. Wouldn't fecal tests be standard by this point to check for occult blood and any other indicators?
He did the scope this past Friday. I had propofol and thankfully was knocked out so not sure how long he scoped me or if I would have experienced severe pain. He hadn't seen me in 4 weeks and didn't ask me one question about my current state of health. Only told me to lay on my left side and back up toward him. Had to ask to talk to him afterward to determine next steps. Did not take any biopsies to check for microscopic inflammation or IBD markers and said "Normal scope. Must be IBS. Take more fibre. Nothing more I can do". After more pressing he admitted that he did see a couple of pockets of diverticula but I don't have diverticulitis. Asked him to read my list of symptoms above and told him I suspected Crohn's. After reluctantly reading my notes he said "No signs of inflammation so it can't be Crohn's" so I reminded him the scope can't reach into small bowel and I want a small bowel follow through done. He said he looked there and I gave up arguing with his level of incompetency then and the need to explain to him how short of a distance the scope can actually go into the small bowel. I believe he is setting up the small bowel follow through.
I felt violated and cheated once again by the healthcare system feeling like I need to beg to get any help. I went through this for IBS diagnosis, fibromyalgia diagnosis and gluten sensitivity. If you aren't in the classic cookie cutter group of visible symptoms where an illness pops out in the doctor's face they chalk it up to some flaky diagnosis without any real treatment plan.
I've been on short term disability for the past 4 weeks. I can't return to work feeling like a ticking time bomb and not knowing if I will have another episode of severe pain. I'm not being treated as there is no diagnosis other than IBS which I do not believe would cause these severe GI and extra intestinal symptoms. The first 4 weeks while on the antibiotics I was on/off work the entire time pushing myself to get in and then feeling absolutely horrible when I arrived and needing to leave early.
How do you manage being undiagnosed, untreated and basically unheard by a GI when you need to get back to life in general? My GP is great. I'm seeing her this coming Friday and I don't feel able to return to work without having any answers or a treatment plan. She might be willing to try me on some IBD meds on a trial basis but if they don't help I still need to see another GI for further investigation and if they do help I would need to have ongoing care from a GI. The wait to see another GI will be months in Ontario Canada.
The pain did subside some while on the bland diet but is that what I'm left with for now where my choice of foods is 6 things only and I still have pain and D? I'm still fatigued and basically need to lay down and rest most of the time. I strongly suspect the antibiotics caused this and it won't go away without the correct medication. My GP will do the bloodwork I've read about to test for IBD. Is there any med for IBD that could be used for a trial to help me?
Again I apologize for the length of my post and thank anyone that can help.
WARNING - my post is long and I do apologize but wanted to be thorough.
I am a 48 year old female diagnosed with IBS 23 years ago. I've had many urinary issues and would be on Cipro for multiple UTIs over the past 10 years. 2 months ago I had what I thought was another UTI (lower back pain, bladder pain, frequency, urgency, pain down both sides of my waist). I have the Cipro script on hand due to the numerous UTIs so I rarely get a culture and sensitivity done to quickly get over the UTI.
I took 4 different antibiotics in a span of one month because they weren't helping with the intense abdominal pain. I feel this messed with my immune system and caused either a flareup of IBD or actually caused my first IBD incident. I had only experienced this level of abdominal pain twice - one in 1991 when I was diagnosed with IBS and 8 years ago when gluten sensitivity was discovered. Routinely the antibiotic clears up the pain and I'm back to normal. I've been gluten free for the past 8 years and had no GI symptoms aside from the normal D up to 4 times per day.
This bout of pain in June, the 4 different antibiotics and the fact that nothing helped clear up my symptoms led me to think about IBD specifically Crohn's. The more I researched this disease the more I felt I could have it:
• Smoker 30 years
• Diagnosed with IBS at the age of 26.
• Mother and maternal grandfather had bowel issues. Mom – chronic diarrhea for many years, grandfather had colostomy
• Daily migraines 10 years plus. Took ibuprofen almost daily for past 5 years (know now that NSAIDs are not helpful)
• Get sores in mouth. Most recently had increase of sores over past 2 months on a weekly basis with a metal like taste
• Skin - white bumps around ankles for a couple of years and red rash on upper chest for past year, rosacea for over 5 years, 4 small red bumps like a blood blister on legs and arm
• Eyes – irritated, extremely dry, tears burn. Treated for glaucoma for past 6 years and newest ophthalmologist does not think its glaucoma and took me off of treatment drops. Vision has deteriorated greatly over last two years
• Ears – have had sores and dry flakey skin inside for over 3 months – bilateral
• Joint pain – past 2 months have had pain in right middle finger, bilateral hip pain in July and neck/upper shldr pain for past week, constant jaw and cheek pain for 2 days (diagnosed with fibromyalgia 20 years ago)
• Pain in 17 areas of my body (lower back, waist, perineum, anus, all 4 abdominal quadrants, both shoulder blades, under both breasts in a sweeping band motion, below both ribs and predominantly between belly button and right breast with all areas ranging from dull and crampy, to pressure-like lasting hours to sharp stabbing pain causing me to jump out of my chair at work up to 30 times in past 2 months.
• Two previous colonoscopies were extremely painful - worse than childbirth for me.
• Multiple UTI’s and take antibiotics (last 5 years - Ciprofloxacin) at least 3 times/year for entire life. Was on a low dose of Cipro for nearly a year to clear up resistant symptoms of pain in bladder and lower back. Understand that Cipro is sometimes a treatment for IBD and the pain could have been from GI rather than urinary.
• Buscopan (anti spasmodic) made symptoms worse at end of 3.5 week course of antibiotics in July
• U/s during past 5 plus years have shown “fatty infiltration of liver”
• Need to take imodium/pepto bismol almost daily for past year. Took it occasionally for past 10 years.
• Nausea usually in morning started a year ago but since June has been almost daily. Either feel full or nauseated for past 2 months after eating half of normal serving
• On bland IBS diet (soup, toast, clear fluids, jello, probiotic yogurt, rice, applesauce, eggs and bananas) from July 8th until July 28th – when trying to introduce any food that I tolerated before this episode my pain increased
• Extreme fatigue
• Chills almost daily since July but no fever – goosebumps on arms and legs
• When abdominal pain is bad have had tremors in hands and a feeling of shakiness inside, brain fog worsens
• Since early 1990’s have had loose stools, rarely constipation. Usually floats and has consistency and colour of wet sand.
• Prior to June/July have at least 2 loose bm’s each morning and 1-2 more loose stools rest of day. Since July have had increase to 7 loose stools even on bland IBS diet.
• Pale coloured stools like ribbons, short and thin – light green, pale yellow while on bland diet.
Saw a greatly incompetent internist in July that determined from my intake questionnaire only that this was caused by stress, its only IBS and do I have a history of emotional/depressive/anxiety disorder without hearing my symptoms. Said he'd do a colonoscopy if I wanted but since my last one from 8 years ago he knew he wouldn't find anything. Physical exam included grabbing at my abdomen with his big meaty hands and pinching in 3 areas causing severe pain. It was by no means any type of palpation like a knowledgeable caring doctor would perform. His consult note indicated my vital signs and heart sounds were normal yet he never performed either of these exams on me.
U/s and xray were normal. Routine bloodwork has been normal (WBC and Sed rate). I asked for a c. diff test which I assume was normal since I haven't heard anything. Had to ask for a CT scan and will have it on Aug. 20th. Neither my GP nor the Internist did any other fecal tests. Wouldn't fecal tests be standard by this point to check for occult blood and any other indicators?
He did the scope this past Friday. I had propofol and thankfully was knocked out so not sure how long he scoped me or if I would have experienced severe pain. He hadn't seen me in 4 weeks and didn't ask me one question about my current state of health. Only told me to lay on my left side and back up toward him. Had to ask to talk to him afterward to determine next steps. Did not take any biopsies to check for microscopic inflammation or IBD markers and said "Normal scope. Must be IBS. Take more fibre. Nothing more I can do". After more pressing he admitted that he did see a couple of pockets of diverticula but I don't have diverticulitis. Asked him to read my list of symptoms above and told him I suspected Crohn's. After reluctantly reading my notes he said "No signs of inflammation so it can't be Crohn's" so I reminded him the scope can't reach into small bowel and I want a small bowel follow through done. He said he looked there and I gave up arguing with his level of incompetency then and the need to explain to him how short of a distance the scope can actually go into the small bowel. I believe he is setting up the small bowel follow through.
I felt violated and cheated once again by the healthcare system feeling like I need to beg to get any help. I went through this for IBS diagnosis, fibromyalgia diagnosis and gluten sensitivity. If you aren't in the classic cookie cutter group of visible symptoms where an illness pops out in the doctor's face they chalk it up to some flaky diagnosis without any real treatment plan.
I've been on short term disability for the past 4 weeks. I can't return to work feeling like a ticking time bomb and not knowing if I will have another episode of severe pain. I'm not being treated as there is no diagnosis other than IBS which I do not believe would cause these severe GI and extra intestinal symptoms. The first 4 weeks while on the antibiotics I was on/off work the entire time pushing myself to get in and then feeling absolutely horrible when I arrived and needing to leave early.
How do you manage being undiagnosed, untreated and basically unheard by a GI when you need to get back to life in general? My GP is great. I'm seeing her this coming Friday and I don't feel able to return to work without having any answers or a treatment plan. She might be willing to try me on some IBD meds on a trial basis but if they don't help I still need to see another GI for further investigation and if they do help I would need to have ongoing care from a GI. The wait to see another GI will be months in Ontario Canada.
The pain did subside some while on the bland diet but is that what I'm left with for now where my choice of foods is 6 things only and I still have pain and D? I'm still fatigued and basically need to lay down and rest most of the time. I strongly suspect the antibiotics caused this and it won't go away without the correct medication. My GP will do the bloodwork I've read about to test for IBD. Is there any med for IBD that could be used for a trial to help me?
Again I apologize for the length of my post and thank anyone that can help.
Last edited:
