Sufferers of Multiple Illnesses & IBD Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

ron50 said:
Saw my nephrologist today. My kidneys are behaving and the cyclosporine is keeping the nephrotic syndrome under control. He asked how I was and I said fine except for wasting my time breathing. He checked my chest heart and lungs. He was taken aback when I said my neuropathy and oedema were both out of control. He checked my legs. the oedema is almost past the knees. his other checks revealed fluid in my lower lungs. He is suspecting pulmonary oedema and congestive heart failure. He also said that he can hear a murmur in my heart that is consistent with a leaky valve. I have to double my daily lasik dose whilst cutting my fluid intake to one litre a day. he wants me to shed at least two kilos of fluid and then see if It helps me sleep at night.Ron.
Click to expand...
Prayers and support.
 
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.
 
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.
 
ron50 said:
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.
Click to expand...
Hoping the best for you.
 
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.
 
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.
 
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?
 
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.
 
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.
 
CarolinAlaska said:
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.
Click to expand...
I am sorry she has had so many problems.
 
That is a lot to deal with so young CarolinAlaska. HUGS to you and your daughter.
 
Jennifer said:
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.
Click to expand...

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.
 
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. :mademyday: Hopefully three specialists won't be a crowd. :ghug:
 
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.
 
Hi all,

I started out being diagnosed with Crohn’s 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. I’m currently awaiting genetics for Wilson’s Disease.
 
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?
 
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.
 
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.
 
Ann Morgan said:
Dear Valley: Okay, I am new here and I just read an old post you had written. You have really opened my eyes !

I am going through a myriad of doctors right now too. I am seeing a Urologist for a cyst on my right kidney ( I had a cyst taken off of my left kidney in 2007. I recently had an ultrasound and CT scan of my kidneys. My doctor and I will be monitoring the cyst. I told him I DO NOT want another kidney surgery unless I really, really have to have it. I don't believe I should have had the FIRST kidney surgery, but the doctors made it sound like it was life or death and I must have the surgery. The cyst was only 1.5cm and when they took it out it was benign. I will see my new Urologist every 6 months.

I have been seeing an Endocrinologist for a few years now, but never was put on medication. I had had regular visits, blood tests and ultrasounds of my thyroid. I have three nodules on my thyroid and the ultrasound showed that nodule was growing. I had a needle biopsy of the nodule and cells were taken. The cells were negative for cancer. I was just currently put on thyroid medication for the first time.

My Endocrinologist will now be in charge of my Osteoporosis. My Gynecologist used to be in charge of monitoring that, but he isn't on my new insurance plan. I have regular DEXA scans. I take Fosamax and vitamin D3. I will see my Endocrinologist every 6-8 weeks to monitor my new medication and to have a blood test.

I just saw my Rheumatologist the other day. I had seen him in 2012, but I did not have health insurance then, so I could not follow what he recommended me to do. I originally saw him in 2007 and had Physical Therapy for the arthritis in my neck. My neck pain and arthritis has recently gotten way worse, so I went to see him. Basically I am just going to go to PT twice a week for six weeks. I didn't get any pain medication. I can barely move my neck at all. I will follow up with him in a month or two.

I am seeing an Orthopedic doctor about my shoulder/shoulders tomorrow. I have joint disease in my left shoulder ( since 2010 ) and it has been quite painful since June 2014. My other shoulder is bothering me too, plus I have limited mobility in both. I am not sure what he is going to say, but the left shoulder is my biggest pain issue and I want pain medication for the left shoulder. I cannot stand the pain in that shoulder any longer. This is a new Orthopedic doctor from the one I saw in 2010.

Starting in June 2014 I have been having issues with my Ulcerative Colitis, Hip Arthritis, Left Shoulder Joint Disease and Neck Arthritis. Surely all of these things are connected but I will be seeing a different doctor for each disease/illness. When I go to each Specialist I try to explain all of the other things that I have had wrong with me since June and that I believe they are all related ( inflammatory ). I don't know which doctor is going to give me some medication for pain, but someone better do it.

I am seeing a new Gastroenterologist. I made sure my old medical records from my last doctor were faxed over to his office so that he would know my colon history. I doubt he even read those records. I saw my last doctor for 8 years ( he was not on my new health insurance plan ). I hope the new doctor can figure out my sudden constipation problem, again since May 2014 ). He is a new doctor to me and I am very nervous about the colonoscopy next week, as the colonoscopy is done in his doctor building and not in a SurgiCenter. I was very concerned about the kind of drug I would be given to knock me out during the surgery and how the "in house" colonoscopy procedure works, so I was given the phone number to the actual Anesthesiologist and I called him ! He was very nice and explained the process and what the drug was that he was going to give me. He assured me that I would be totally knocked out and not just in a light or twilight sleep.

Sorry this is so long.
Click to expand...

Ann Morgan is my old profile !
I just read all my old posts on this thread and I am glad my posts were so detailed because I read some stuff that was on there that I had forgotten about !!

Have a great week. 🐝
 
Last edited:
Not that I wear the following as a badge of honour, but here we go.
. Crohn's Disease
. PVD . Fempop bypass (L) - bilateral stents iliac arteries. Blocked (L) Carotid Artery. Previous TIA(asphasic). In short, atherosclerosis.
.COPD.( Yes, I used to smoke), but feel free to do so if you have them.
.Ischaemic Heart disease. Knackered coronary arteries, but partially re -routed.
. Auto immune induced arthritis and osteoporosis.
.IBS (Irritable Bastard Syndrome)
. Anxiety from trying to discern flatus from something more dire
. The FITH syndrome (' effed in the head)- old psych nursing term!
Crept alopecia with accompanying loss of teeth.

Otherwise , at 73+ I have a pulse and feel so sorry for younger people with IBD and Crohn's. You may perceive what I still maintain a sense of humour-if not so seek urgent treatment.!
Cheers
Merv
 
Nothing much to report, except what appears to be a minor miracle. A colonoscopy performed 2/7 ago supposedly indicated that the area of the ileum contained no evidence of active CD. So far, so good.

The Registrar that did the procedure, works a junior member of my usual 'gastrobod's' team. My chap is now the grand poobah of all matters, great and small, in stool shed department. l

I first realized that something was wrong when an unknown medico emerged from my anaesthetic haze to advise me that, nothing untoward was found.
Later, reviewing the procedure summary, I noticed that the scope only penetrated the first 5cm ( 2") of the ileum, hardly the voyage of the Argonauts! A recent MRI had indicated that an area well above this range was compromised. The matter had already been discussed with my regularl medico.

The other facet that amused me was a notation from the genius that did the job was that biopsies were not taken, because I was taking Pradaxa. Having known well in advance that I was taking several other drugs, WTF didn't someone query this? Are you expected to think for them, perhaps?

Some days later, I received a call from my treating specialist. He too was a little sceptical about the 'miracle', relating that as I was the last cab off the rank for the day's colonoscopies, perhaps the team were rather tired! Tired my Ass!

As a consolation prize, he told me that the stool test conducted prior to the procedure had confirmed that I had developed a C Diff infection! This may well have resulted from Stelara use, or the overuse of antibiotic Rxs by my GP for chest infections and mouth ulceration.

Needless to say, I still pay numerous trips to the loo, both day and night. I really never have believed in miracles and this has confirmed my view. LOL.

Now starting the second course of Flagly with a tongue like raw steak, I am seriously peed off!

Sorry about the rant, but it is cathartic to do so occasionally.

Best Wishes to you all,
Merv
 
Jennifer said:
Nope, no idea. Apparently it's too mild they they don't want to bother with it either. I've had stress tests, many EKGs and a couple holter monitors but the tests never pick up anything major worth noting. So I take a beta blocker to reduce the palpitations.

My mom and her father both have really bad heart problems. My mom hasn't said that she has it (even though she takes all the meds for it) but I know my grandpa has heart disease and now congestive heart failure and had a pacemaker put in recently. So hopefully my heart will just keep it's little palpitations and minor pains to a minimum and nothing more. You guys too. Heart problems scare the crap out of me.
Click to expand...

I'm so happy to read your post and feel less alone. I think my first symptom before I was diagnosed with Crohn's (and probably had it all along) was heart palpitations and my heart rate gets really high just barely moving around and it scares me everytime. Add hypochrondria to the list. :p I've had asthma since I was a child. I identify as a highly sensitive person. If you have never looked it up might be a game changer for you.

Lately I am doing lots of work on wondering how much my childhood trauma (neglect primarily but also a lot of bizarre things going on around me when I was little). I wonder how much this is to do with chronic illness. I was chronically stressed, nervous, didn't know what would happen next, and I think holisitically speaking it's had a huge effect on why I have so many things going on in my body now.

Anyway I was really grateful for your post.
 

Similar threads

Papantoine
Neglect?
Replies
0
Views
334
Papantoine
Papantoine
F
does this seem like IBD?
Replies
33
Views
4K
my little penguin
my little penguin
thike1966
Hotel Crohn's Forever, The Return Of The Fistula
Replies
0
Views
642
thike1966
thike1966
G
IBS vs IBD
Replies
2
Views
2K
Stressedmom
S
Soryan
PARADIGM SHIFT NEEDED!!!
Replies
1
Views
1K
kiny
kiny

Latest posts

Back
Top