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04-05-2016, 01:50 AM   #211
ron50
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Thanks Ron . He did say that there may be some treatments that would benefit me if all of my results are not too bad. I would love to go fishing again.It is the best medicine for me. Ron.
04-27-2016, 06:58 AM   #212
ron50
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Well I saw several docs today, first was a skin cancer specialist. I have had a spot appear on my lower cheek and grow over 6 or 7 weeks . I told him I didn't like the lookof it. He agreed , he did not take a biopsy he excised it with margins . He thinks it is a highly pigmented BCC ( black) at least he hopes it is , so do I.
Then off to the nephrologist for heart ultrasound results , lots of sounds like and could bees and then the final comment , patient is very difficult to ultrasound due to his build ,so the result , We don't know but it doesn't seem like you have atrial fibrillation but you may and we don't think it is heart failure but it sure acts like it.My neph sent me downstairs for an ecg . Lots and lots of ectopics but no fibrillation Oh and yeah there seems to be scar tissue at the bottom of your heart. My neph does not believe the ultrasound or the ecg. What he does know is that all of my liver functions are way into the red and I seem to be dealing with moderate to severe auto immune hepatitis, He si not happy . I have to have an ultrasound of my liver and a two week hit of prednisone to see if my liver responds. He said straight out that he really thinks that it is all to do with the same unknown auto immune disease that is attacking my kidneys. My oedema levels have moderated and he is letting me deal with it. He has given me guidelines based on weight loss //gain as to whether I restrict fluid and take one or two diuretics a day. I am feeling like crap and he has said that is a direct cause of my liver being swollen and inflamed he just said feeling bad goes with the territory. I really hate steroids. I'm hoping they don't screw with my diabetes. Ron.
04-27-2016, 09:23 AM   #213
ronroush7
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Well I saw several docs today, first was a skin cancer specialist. I have had a spot appear on my lower cheek and grow over 6 or 7 weeks . I told him I didn't like the lookof it. He agreed , he did not take a biopsy he excised it with margins . He thinks it is a highly pigmented BCC ( black) at least he hopes it is , so do I.
Then off to the nephrologist for heart ultrasound results , lots of sounds like and could bees and then the final comment , patient is very difficult to ultrasound due to his build ,so the result , We don't know but it doesn't seem like you have atrial fibrillation but you may and we don't think it is heart failure but it sure acts like it.My neph sent me downstairs for an ecg . Lots and lots of ectopics but no fibrillation Oh and yeah there seems to be scar tissue at the bottom of your heart. My neph does not believe the ultrasound or the ecg. What he does know is that all of my liver functions are way into the red and I seem to be dealing with moderate to severe auto immune hepatitis, He si not happy . I have to have an ultrasound of my liver and a two week hit of prednisone to see if my liver responds. He said straight out that he really thinks that it is all to do with the same unknown auto immune disease that is attacking my kidneys. My oedema levels have moderated and he is letting me deal with it. He has given me guidelines based on weight loss //gain as to whether I restrict fluid and take one or two diuretics a day. I am feeling like crap and he has said that is a direct cause of my liver being swollen and inflamed he just said feeling bad goes with the territory. I really hate steroids. I'm hoping they don't screw with my diabetes. Ron.
Hoping the best for you.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
05-12-2016, 05:44 PM   #214
Jennifer
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I'm sorry to hear that ron50. Hope the biopsy comes back clear and I hope the steroids help and don't mess with the diabetes too much. It can but I hope it won't since it will likely be a short course of steroids. Keep us posted.


I was diagnosed with Osteopenia. I'm not surprised since I had taken steroids for years at high doses when I was younger and before my GI doctors really realized the amount of damage they can do when taken long term. I wish other medications had been approved back then. Oh well. Now I have to continue to monitor my Vit D and B12 to make sure that my bones can stay as healthy as they can be. My calcium was in the high normal range so I'm alright there. I should also lift less to avoid more stress and wear and tear on my bones. I'm not looking forward to a possible broken hip in my near future. My doctor says that I'll likely have Osteoporosis by my early 40's. Damn you Prednisone! Damn you.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
05-12-2016, 05:46 PM   #215
ronroush7
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I am sorry, Jennifer.

05-12-2016, 06:43 PM   #216
ron50
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I am sorry Jennifer. I know exactly how you feel having been on 75 mg of pred for nearly two years including a six month taper . It was supposed to stop me losing protein loss thru my kidneys. My protein loss rose. As a result I have type two and osteo-penia as well. I got the results of my tests and an I'm sorry I really don't know what is causing your symptoms. My liver appears to be normal size with no signs of tumours as are my pancreas and kidneys which he described as bumpy. He has no Idea what has put my liver functions well into the red. He has no idea what is filling my legs and chest with fluid. He has discounted congestive heart failure , nephrotic syndrome , auto-immune hep or any other malignancies in my liver ,pancreas or kidneys. My inflammatory markers are thru the roof and I have pain in most joints. He can't help me and all he can say is let's still try the pred for two weeks. I think I am becoming paranoid. Why do I not trust the doctor when he gives me a script for 60 prednisone tablets and three repeats. At least I got lucky with the skin cancer. It was a heavily pigmented nodular basal cell carcinoma which he excised with clear margins..
I have no idea with what to do with the osteo-penia. My nephrologist has asked me not to take calcium supplements as I have issues with kidney stones and it is personal opinion that calcium supplements can increase the risk. Again I don't understand tat as my stones have always been uric acid. I have been passing blood in my urine the past couple of days. Go to the doctor? why bother? Ron. Ps Good luck with the osteo-penia Jennifer , I hope you can stop it progressing to Osteo-perosis, Hugs Ron.
05-12-2016, 10:51 PM   #217
Jennifer
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Is it possible to get a second opinion ron50? My mom has issues with her heart, liver and pancreas and also has Diabetes. She has been retaining fluid lately as well and they believe it's mainly the diabetes which she is still trying to get under control. She was seeing the worst doctor for the longest time before she was finally sent to see a specialist for the diabetes. Is there a diabetes specialist around where you live?
05-13-2016, 12:53 AM   #218
ron50
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I had a diabetes review about four weeks ago. I find that my morning test varies a great deal but apparently due to the hormones secreted during waking up it is not a terribly reliable reading. The one they seem to go on is my history blood count and it averages out at around 6.4 and has for the past thirty years. The doctor who put me on 500mg of metformin twice a day did so after doing a fasting glucose tolerance test with insulin levels. After two hours my insulin should have been in the 10-20 range but it was 260 and he believed I had severe insulin resistance and was rapidly heading for insulin controlled diabetes. The diabetes review and my nephrologist both believe that I am totally compliant with diet and that I am very well controlled. My neph actually believes that I will never become insulin dependant. I still take my b/s every morning and it varies between 6-8. I believed it was my kidneys as my protein loss has exceeded 7+ grams a day at times. My nephrologist said the cyclosporine is holding my protein loss at under a gram a day. He has totally discounted ascites with my liver. The only thing that they have not checked is the elevated inflammatory response and I wonder if it is what has elevated my liver functions and caused the oedema. I know inflammation causes fluid in other areas I just don't know if it can cause widespread oedema. I think he is hoping the pred will act as an anti inflammatory . I can't take nsaids with my kidneys . I lived on them for many years when I was younger. Ron.
05-15-2016, 07:21 PM   #219
CarolinAlaska
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I thought I'd jump into this group. I'm mother to a 17 yo gal with Crohn's, osteoporosis, asthma, hypermobility syndrome (probable Ehlers-Danlos syndrome), seizure disorder, primary lymphedema, scoliosis, blood clots, depression, learning struggles, joint pains and HLA B27 positive. Last year she saw 15 specialists. Since September she has been hospitalized 4 times, but only once before that as a baby. Finally her Crohn's has given us a reprieve, but her seizure meds made her suicidal and she had to go on Prozac, which took away her appetite. Since December she was diagnosed with hypermobility syndrome, which has led me to research and see that Ehlers-Danlos could account for most all of her problems except the lymphedema.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
05-15-2016, 07:33 PM   #220
ronroush7
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I thought I'd jump into this group. I'm mother to a 17 yo gal with Crohn's, osteoporosis, asthma, hypermobility syndrome (probable Ehlers-Danlos syndrome), seizure disorder, primary lymphedema, scoliosis, blood clots, depression, learning struggles, joint pains and HLA B27 positive. Last year she saw 15 specialists. Since September she has been hospitalized 4 times, but only once before that as a baby. Finally her Crohn's has given us a reprieve, but her seizure meds made her suicidal and she had to go on Prozac, which took away her appetite. Since December she was diagnosed with hypermobility syndrome, which has led me to research and see that Ehlers-Danlos could account for most all of her problems except the lymphedema.
I am sorry she has had so many problems.

05-16-2016, 12:13 AM   #221
Jennifer
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That is a lot to deal with so young CarolinAlaska. HUGS to you and your daughter.
05-16-2016, 12:45 PM   #222
DougUte
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Wow. That is quite the list CarolinAlaska. Somebody so young dealing with all that. Hugs.
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Started Humira June 22nd, 2011
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Due to the insurance company, Humira ended on January 31, 2017.
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05-23-2016, 04:46 PM   #223
Ann Morgan
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I'm sorry to hear that ron50. Hope the biopsy comes back clear and I hope the steroids help and don't mess with the diabetes too much. It can but I hope it won't since it will likely be a short course of steroids. Keep us posted.


I was diagnosed with Osteopenia. I'm not surprised since I had taken steroids for years at high doses when I was younger and before my GI doctors really realized the amount of damage they can do when taken long term. I wish other medications had been approved back then. Oh well. Now I have to continue to monitor my Vit D and B12 to make sure that my bones can stay as healthy as they can be. My calcium was in the high normal range so I'm alright there. I should also lift less to avoid more stress and wear and tear on my bones. I'm not looking forward to a possible broken hip in my near future. My doctor says that I'll likely have Osteoporosis by my early 40's. Damn you Prednisone! Damn you.
Jennifer : I also have Osteopenia and I am always afraid of falling. I also take Vitamin D and Vitamin B12 daily. I do not take steroids.

I cannot figure out why my 39 year old niece is taking daily Prednisone for her arthritis ( RA? ) every day when her arthritis is not even bad. Why would a 39 year old be prescribed Prednisone to take on a daily basis when the risks of taking Prednisone is so high ? My sister takes Prednisone, but she has bad RA and she is 65 years old. I took Prednisone for two weeks in 2001 when I had Optic Neuritis, but that is the only time I was prescribed Prednisone.
09-16-2017, 07:27 AM   #224
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Currently undiagnosed and awaiting an appointment with GI. Been dealing with chronic diarrhea, constipation, abdominal cramping, and a few episodes of embarrassing fecal incontinence for several years now. PCP chalked it up to IBS. Over the past week, I've been dealing with an abdominal mass, which I definitely do not remember being there last week or the week before, chills, and diarrhea. I keep hoping that it will go away, but I'm pretty sure it won't.

I also have undifferentiated inflammatory arthritis (rheumy isn't sure it's RA or lupus due to high sed rate and positive ANA blood tests but she treats the symptoms nonetheless), dx of fibromyalgia, pretty noticeable scoliosis, Vitamin D deficiency, polycystic ovarian syndrome, and Hashimoto's thyroiditis.

I have a great rheumatologist and a bossy but knowledgeable endocrinologist. For a long time, my endo wouldn't talk to my rheumy. Now they're friends that try not to do repeat labs or double charge me for the same services. Hopefully three specialists won't be a crowd.
04-09-2018, 09:57 AM   #225
curlywurly
 
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Hi All
I thought I may as well join this support group I have over the last five years collected a few more illness to add to the list.

High Blood Pressure, Asthma, Hiatus Hernia, Crohn's colitis, Barrett's Osphagus last but not least Chronic Kidney Disease.
I take meds for the BP and the Asthma also for the acid reflux.
04-09-2018, 03:02 PM   #226
rrhood1
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Welcome curlywurly! Glad you could join us. We seem to just keep adding diseases as we go along.
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Dx: Crohns - 2010
Dx: Severe cervical spondylosis/foraminal stenosis, ruptured discs
Dx: Severe lumbar ruptured discs
Dx: thyroid cancer - 2 surgeries - done with
Rx: Remicade, Methotrexate, Lyrica, Butrans patch
Vitamin D, C, B, calcium
04-09-2018, 03:06 PM   #227
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Hi all,

I started out being diagnosed with Crohnís disease and over the last four years have also been diagnosed with GORD/GERD, Arthritis, spinal stenosis, Joint Hypermobility Syndrome, POTS, hypotension and liver disease. Iím currently awaiting genetics for Wilsonís Disease.


04-09-2018, 04:00 PM   #228
rrhood1
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GreenwichUK - welcome! Glad you could join us.
04-10-2018, 03:53 AM   #229
curlywurly
 
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Hi All,
I wonder in my case is it just because I am getting older 59 this birthday, or are we all just bloody unlucky.
My blood pressure was diagnosed in 2005 after my mum died so I don't think Crohn' has a role in that but because of all the different meds over the years I cant help but be paranoid that Crohn's is involved, does anyone else feel the same?
04-10-2018, 07:10 AM   #230
ron50
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I just turned 68. My cv so far includes colon cancer ,stage 3 into six nodes. I had my last scope in april last year. It produced 4 polyps between 4 and 12mm. Fornutately not cancerous. As of this january I have survived cancer for twenty years. I have auto immune nephrotic syndrome of the kidneys for which I take cyclosporine twice a day. I have high cholesterol for which I take Fluvostatin. High blood pressure , Diltiazem 180, micardis 40 and prasozin. I have auto immune peripheral neuropathy. I have auto immune seronegative poly arthritis , no treatment other than the cyclosporine. I have auto immune hepatitis. I have osteopenia. I have type two diabetes ,galvumet twice a day. I have been in hospital twice so far this year with vertigo. The first time the two ecgs I had both showed atrial flutter and atrial fib.I now take warfarin every day. I still suffer pulmonary and peripheral oedema. I take 40mg of lasik a day. On top of my atrial fib I have around 12000 premature atrial and ventricular ectopic heart beats a day. I am still working four days a week but it is getting very hard to keep going as my back is a mess and I cannot take any pain pills. Because I have lost a chunk of my colon plus my gallbladder I suffer badly at times with bile salt diahorreah. Questran usually gets it under control. I have problems with high urea and kidney stones but allopurinol helps to keep it in check. I find it quite amazing how many things can go wrong but a body still manages to function,,,,,SORT OF. Ron.
04-10-2018, 08:53 AM   #231
curlywurly
 
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Hi Ron50
Thanks for your experiences Ron it sounds like you have been through the mill.
I too think the body is amazing but we only consider it when things go wrong, when we are fit & healthy we don't give it a moments thought.
Keep smiling Ron its the only thing for it.
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