# Sufferers of Multiple Illnesses & IBD Support Group



## Jennifer

This support group is for members who seem to suffer from almost everything under that sun (or at least it feels that way sometimes). "If it's not one thing it's another," takes on a whole new meaning here. 

In this group we can discuss multiple topics including:

- What do you have?
- How do you juggle all your appointments?
- Do you still manage to work?
- Taking meds takes on a whole new meaning, how many are you taking?
- Why does it seem like everything is a small white pill? Hope I took the right one... :ybatty:
- Do your doctors get along?
- How do you know if it's X, Y or Z acting up again?
- Any tips for the best tests out there for your specific medical conditions?


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## valleysangel92

I don't quite suffer from everything under the sun (yet, I think my doctors are determined I will though :voodoo but I have a few little beauties that love to cause chaos, so maybe I qualify for this. 

What I have - 

*Coeliac disease* - autoimmune gluten intolerance/allergy, severe case (TTG supposed to be under 10, they gave up counting mine when they got to 200, this happened on about 6 repeat tests), currently under good control (no thanks to doctors) diagnosed at age 14 after a year of testing. 

*Familial Hypocalcuric Hypercalcimia* - Too much calcium in my blood stream, my body is not realising when calcium levels get higher than normal, until they are at most people's danger levels, so it doesn't get rid of it through urine unlike most peoples, I have probably had this all my life, so my body learnt to cope. I have to have careful monitioring and stay away from calcium supplements. Diagnosed age 15. 

*Osteopenia* - Just like many others here, I have thinning bones, I can't remember what my bone score is, and my various specialists cannot agree a suitable treatment, or which of them is even responsible for finding one. Diagnosed age 17/18 (Can't fully remember) 

*A variant of TMJ * - When I was growing, my jaws didn't grow correctly, which has resulted in my bottom jaw being a little too short and my top jaw being a little too long.. I am currently in discussion about having braces and surgery to create a better bite and make eating etc easier. Diagnosed at 17. 

*Asthma*- diagnosed at 18, when I was diagnosed I was catergorised as modertate-severe now catergorised as mild, still use a steroid inhaler every day. 

*Query inflammatory arthritis/chronic pain/fibromyalgia* Currently don't know which, but my rheumy is saying that all the joint pain and tenderness is more than likely down to one of these three things, so I'm having Isotope scans in April to look for inflammation. 

And of course.. the lovely crohns, which isn't behaving itself as much as I'd like it to at the moment.. 

I currently don't work, per doctors advice. 

I'm currently taking - *Vit D3* 800IU x 4, *Mini-pill* (extreme period pain, endometriosis has been mentioned several times, never had tests), *Steroid inhaler* x2 daily, *buscopan* 2x 10mg when needed, *cocodamol* 8/500 when needed, *tramadol* 1-2 x 50mg when needed (very rarely use it) and my doctors are arguing amongst themselves over me taking Alendronic Acid, currently not taking. *I'm not taking any crohns meds, another thing my doctors are arguing about. I would feel safer if I was*. 

I keep track of meds with a weekly pill dispenser, or at least I did last year when I was taking something silly like 28 pills a day.. 

My doctors get along some times, currently, they can't agree who is supposed to treat the osteopenia, I have 2 GIs, one of them is an IBD specialist, but I only see him about once a year, so I have to see the non specialist most of the time.. I used to really like him, but my last appointment made me less sure.. My rheumy spent the first ten mins of our appointment correcting other doctors mistakes, and my endocrinologist doesn't think the high calcium is his problem, and made me feel like a little kid, telling his registra to 'reassure me and send me home'. I was only there because one of the GIs sent me there because he wasn't sure what to do.. 

I'll come back with some tips another time.. this post is turning into an essay


Edit- I forgot to add,  that I also have fluid around my lungs, and I've had cysts on my kidneys (not sure if they have ruptured or not)  .


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## mdd

Thanks Jennifer for this support group. I know lots have other issues we are dealing with. I my self have heart trouble, bypass, kidney stones, PSC(liver disease), and crohns . With those comes lots of meds. Attacking my body. In  the  last 4 years  Changing  meds. Because of side effects! And  being in the middle of two or more doctors arguing  about why that doctor change  My meds and why.  Cannot function. It's hard ! When you feel something's wrong, pain. You have to stop and figur out what  is it , Heart, ,crohns ect. Then who to call? As I did this weekend went to the ER with chest pain. But my heart doctor was upset that my PC doctor took me off  Lipator. I'm home now and have to see my PC doctor.  Tomorrow and hear him yell.( sorry for the spelling) lots of trauma  with heart surgery may show up. Because it's a shock to your body. It's amazing that the Crohns takes a back  seat to the other illnesses. Until it wants it's time!! Haha . I know why I get depressed and low. And I cannot work any more on SS DISABILTY  I want to help people. But cannot commit because I never know how I feel each day.  :ghug::smile: thanks. Guys  Maria


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## UnXmas

I'll join. But my primary illness is a unique genetic condition causing progressive neurological/rheumatological deterioration, with no clear diagnosis. I also have endocrine problems (undiagnosed but including ovarian failure). I have osteoporosis but I barely remember I have it as it causes me no symptoms.

I find it kind of hard to discuss my other illnesses on this forum. I'm so much sicker than the vast majority of forum members, it's difficult to see people saying they are suffering with being ill, when Crohn's is the least of my medical worries. It concerns me that I'll come across as unsympathetic, whilst at the same time it frustrates me greatly to see people so oblivious to being _really_ sick (I mean dependent on carers, no chance to work or have kids, knowing it will only get worse even though I'm so young). People don't understand physical and emotional pain.

That's just something I had to unburden myself of; this thread seemed like a place to do that as perhaps there is someone else feeling the same.


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## Kero

undiagnosed Colitis or Crohn's, I also have TMJ and had endometriosis issues in the past. I also have depression/anxiety issues


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## Mike58

Great idea Jennifer.
I have Crohn's, Heart Failure (HFpEF), Diabetes, Hypertension, Peripheral Neuropathy.
I had to quit my job officially in February this year even though I haven't been able to work since July 2013.  I've applied for SSDI and am still waiting.
It does take some planning and juggling skills to work out all the appointment.  For example, I will see 4 different doctors in 2 days plus labwork.
It becomes a full time job just managing your own health as I now have to track my sodium input, glucose monitoring 4 times daily, and then try to figure out what to eat that won't unbalance one of these diseases.   My uncle asked me what am I doing with myself now that I am not working, I told him I just sit around counting my pills!!!

My doctors are somewhat online with each other but I'm not convinved they care talking to each other all that much.   Are we having fun yet?


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## mdd

Yea I'm going to two doctors this week. And I'm in the middle again! One change meds the other gets mad. I have two Gi doctors two heart doctors, urologist ,  one Liver doctor PSC, therapy  for my depression, anxiety attacks, I believe I see some one each month of the year.  I go  to the office  like people go to the store. I bring my iPad, headphones. I get ready to Waite a long time I'm used to it . Do not plain anything . I know my doctor will take time with me when I go in the exam room.  I have patient about waiting. And hear people say they've  been waiting a long time. Wow cool it! As long their is a bathroom I'm cool!!! Haha:smile:


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## Essieluv

I have Crohn's, Asthma, Chronic Migraines, autoimmune arthritis, chronic tachycardia without syncope, lactose intolerance, IBS, Pilonidal disease, an esophageal condition, and a sleeping disorder. I also suffer from chronic and sever nausea unrelated to Crohn's, although we can't pinpoint a diagnoses yet (I suspect gastroparesis). 

Overall, most of my docs are pretty easy to work with and don't mind "sharing" me. The best have definitely been my Rheum, Colorectal Surgeon, and PCP. The worst have been my GIs. They are a breed all their own, for sure.


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## Essieluv

I think the hardest part of dealing with multiple illnesses is trying to determine which symptom belongs to which disease/illness. Especially when the conditions you have share similar symptoms. It can be very frustrating and overwhelming. But I do think that, after time, it becomes easier to recognize what disease/illness is acting up.


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## Jennifer

I have Crohn's disease, Osteoarthritis, Tachycardia, insomnia, depression, panic disorder, Agoraphobia, bad acid reflux (never diagnosed as GERD), bruxism (not being treated), overactive bladder, asthma (however it's not bad enough to require medication), I also get many migraines (with visuals sometimes) and I have multiple bulging disks in my spine which put pressure on the spinal cord causing various parts of my body to go numb and hurt. Just started having allergies too so yay, another small white pill. 

@ Mike58 - I completely agree that taking care of our own health with all of these issues really is a full time job. I still manage to do my job here on the forum though which I think also helps distract me from everything else. 

I'd love to be able to start working again but I'm not currently able because of active Crohn's, the panic attacks, arthritis and bulging disks. I'm in pain and constantly tired. I manage to get all my blood work and tests and appointments done on time as if it were my job. 

This might sound silly to some of you but I was diagnosed when I was pretty young (9 years old) so when I started taking a lot of meds, a new one added always seemed like a trophy. I would brag about how many I could take all at once and in a way enjoyed it (nothing better to do when you're really sick I guess) but now that I'm 31 years old, I hate the site of how many I have and try to get rid of the ones I feel aren't necessary. For instance I do have overactive bladder but each medication I tried only made things worse so I stopped taking it and feel better so there are times when dealing with a health problem could be better than taking the medication for it, just depends on how the meds affect you and whether or not it's really benefiting you in any way. I don't take any medication for depression either but I do take medication for anxiety which I believe is helping with the depression and the Agoraphobia. Wish there was one pill to tackle them all.

Edit: I'd also like to have children but with SSI you don't get a lot of money and every extra cent my husband makes that goes over a certain amount at his part time job get's taken out of my SSI check. We can't even afford a car. I'd love to have a car at least and find a two bedroom somewhere where my husband and I can eventually start a family. With all my meds on top of all that though, that's going to be one hell of a planned pregnancy for sure. I hope we can some day. If it's even possible for me to conceive. Never tried before and have been on birth control for over 15 years.

Edit 2: There's also various forms of cancer in my family, diabetes and heart disease. I'm hoping that I don't go down any of those roads as well but it's a very real possibility. Hence another reason to see your doctors often no matter how minor you think the new symptom is.


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## Essieluv

Just curious, @Jennifer do you know what causes your tachycardia? My cardiologist can't seem to pinpoint anything, and it's driving me nuts.


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## valleysangel92

@essieluv and Jennifer,  I've got tachycardia too, didn't even think to mention it.  I've had a few ECGs but to be honest it's never really been looked into that much for me..  My doctors seem to think it's not something they should be 'poking me about ' over. 

Essie have you had your calcium levels checked?  high calcium was thought to be the cause with me for a while,  but then they decided it probably wasn't related and it was just coincidence, but it could be something for you to get looked at.


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## Jennifer

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.


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## carrollco

*sigh* I have Crohn's, Diabetes, currently under control with weight loss, hiatal hernia, Hashimotos,  spondylitis something or another, degenerative disc disease, and right now, I have 2 discs out in the lumbar region, one in the middle back area, and my neck is toast. Of, yeah, arthritis,  and they thought I had RA because of the knots on my hands but the test came back negative. Thank God.


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## carrollco

Oh, I also have tachycardia that I take meds for. It is quite a struggle to keep the heart rate somewhat low without bottoming out the blood pressure. My cardio said that sometimes the autonomic something or other breaks and the heart rate speeds up. In any case, my heart and all my blood vessels are great.


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## HorseLover!!

Other then Crohn's I have TMJ (currently still being treated possibly having surgery ), depression, anxiety attacks, asthma(currently not taking anything), possible arthritis(not been fully diagnosed yet, waiting to my doctor about it), also had ulnar nerve entrapment-had surgery last year to put it right.


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## Jennifer

UnXmas said:


> I'll join. But my primary illness is a unique genetic condition causing progressive neurological/rheumatological deterioration, with no clear diagnosis. I also have endocrine problems (undiagnosed but including ovarian failure). I have osteoporosis but I barely remember I have it as it causes me no symptoms.
> 
> I find it kind of hard to discuss my other illnesses on this forum. I'm so much sicker than the vast majority of forum members, it's difficult to see people saying they are suffering with being ill, when Crohn's is the least of my medical worries. It concerns me that I'll come across as unsympathetic, whilst at the same time it frustrates me greatly to see people so oblivious to being _really_ sick (I mean dependent on carers, no chance to work or have kids, knowing it will only get worse even though I'm so young). People don't understand physical and emotional pain.
> 
> That's just something I had to unburden myself of; this thread seemed like a place to do that as perhaps there is someone else feeling the same.


I had been meaning to respond to this. I was diagnosed with Crohn's when I was 9 years old (I'm 31 now) and as I got older I was diagnosed with more and more illnesses and problems. Having more than one illness is extremely difficult. That doesn't mean that we don't care about those who are newly diagnosed with Crohn's or still seeking a diagnosis. We don't want anyone to have any illness or deal with any symptoms. 

My hope is that with our combined knowledge of having IBD and other illnesses we can help others figure out what's going on with them so it can be caught early on and treated properly. Some IBD symptoms may not even be IBD related. Certain heart problems, diabetes etc can bring on gastrointestinal symptoms. So in a way dealing with so much allows us to help others from hopefully not suffering as much or at least not as bad. 

When I was in the ER for a bowel obstruction, there was another women there complaining about diarrhea. The doctor asked her a lot of questions including how often, are you in pain, do you see blood or mucus etc. She said she goes about 3 times a day, no pain, just liquid stool. It just started happening and freaked her out so much that she didn't want to wait to see her regular doctor so she went to the ER for a mild case of diarrhea. Mild to me but apparently the worse thing in the world for her. Turns out according to the ER doctor it was a side effect from a medication she had just started taking and suggested a stool hardener to help with the symptom and go see her regular doctor. Having Crohn's for so long, it all seemed quite comical at the time. I thought, "you're lucky that's all you have. If you had Crohn's you'd pass out or something." Yet again, I cannot judge, that was clearly an awful thing for her to deal with yet I wouldn't give her as much sympathy as I would to someone who actually needed emergency medical attention. 

I think it's ok and perfectly natural to have these feelings of being worse off than most. I get them too otherwise why would I want to be rid of all of these illnesses? I want them all gone, I just want to be normal. We all do. Saying all this though can come off as being unsympathetic towards others but that doesn't mean we don't care about them or that we have absolutely no sympathy. We're being open and honest by finally venting out what's been frustrating us for so long since we always get to hear, "it could always be worse." Well it is worse and it's only going to get worse. We can still do our best to live our lives the best we can. We got a shitty hand dealt but I'm a sore loser so I'm still going to do my best to win this hand. 

Hopefully others will never experience what we've gone through and will go through in the future as we're all still pretty young. All we can do is help each other which is why I made this support group and so we can share our knowledge with those who are just starting out. Maybe we can help them avoid this fate, and in the meantime help each other through these feelings we get when we wish that we could just swap symptoms or diseases with someone else. 

We're all in this together no matter what or how many illnesses and problems we have. :ghug:


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## Axelfl3333

I have some odds and sods going on besides the wonderful crohns I,ve got ongoing carpal tunnel and ulnar nerve compression 13 operations and counting,broke both ankles playing 5 a side,surgery on one so now I,ve got arthritis in my ankles and knees that my lot and hopefully won,t have any more.


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## yosemitegirl

UnXmas... I'll start where you left off. I completely understand how you feel with all the betrayals of your body... more than you know. Which is why you might avoid dismissing Crohn's for others, though it is the least of your problems. Depends how bad your other stuff is, depends how bad the Crohn's is and most importantly, for how long. Also, so many other variabilities.

I have had Crohn's for 45 years with 10 surgeries. Close to death twice and actually disappointed when I woke up I was so miserable. I since have a DNR on record... do not resuscitate. And I mean it. Not depressed as much as realistic. 

Suffering, by definition, is very subjective. I will never discount another's suffering nor list ALL my ailments to prove it. 

We all need to be heard.

Take care...       Michele Lea


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## rrhood1

Wow - what a list!

Dx: I have Crohns, just diagnosed with thyroid cancer (waiting for surgery), spondylosis of C6 & 7 vertebrae (waiting for nerve blocks for pain & surgery), renal failure of right kidney caused by endometriosis. Also fibromyalgia and high blood pressure (at time).  What a list!

I have multiple specialists - thank god they all seem to get along.  My GP is my primary - she looks after me as a whole.  I have a GI, Rheumatologist, Urologist, and now a Oncology surgeon.  Lots of appointments ( because no one seems to share the ultrasounds, X-rays, MRI's, C-scans).  In a three month period a year ago I had 4 Cat scans - I refused the 5th because it wasn't needed and made the dr pull the others.  My poor pharmacist keeps a good eye for any possible drug interactions.  I love all my doctors (most are female) and they are so accessible - love it!

I'm currently off work due to the cancer and the neck problems.  Don't know when I can return.  Am probably going to look for something other than what I used to do.  My last job as a condominium manager was extremely stressful - I don't know if I want to go back to it.  

Meds - way too many.  Handfuls of pills morning and night.  Pills / injections for Crohns, pills for pain, piles for high blood pressure, pills for tachycardia, pills for reflux caused by the other pills.  Lots of Vitamins - B, C, D and calcium.

How do I tell what is acting up?  No idea - sometimes it's a crap shoot. My GP has a secret diagnosis to rule out Crohns - she puts me on prednisone for 5 days. I'm lucky I respond to prednisone really quickly so if the symptoms disappear right away we know it's Crohns, if it doesn't then it's not Crohns.  It's the best test my GP and I could come up with and it seems to work well. We don't do this very often - just when something is not making sense diagnosis wise.

I think that's all - or it's more than enough.


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## SarahBear

I'll join in.

The only condition I've formally been diagnosed with so far is Crohn's, but it's evident that there's more going on.

My chart reads, "endometriosis by symptoms," as at this point, the symptoms are being controlled decently with birth control and my GYN and I don't feel that surgery to confirm the diagnosis is necessary. 

My rheumatologist suspects some form of arthritis and I also appear to have symptoms of fibromyalgia, but of course, I haven't yet managed to get in to see her while that is flaring.  So for now that one is a big question mark, as the symptoms could certainly point in another direction as well.  Fibromyalgia is my best guess primarily because my mother has it and it seems to have a genetic component. 

My Crohn's is behaving, so I don't currently have any appointments with my GI.  We're on a, "Call if you need us," sort of basis right now.  The rheumatologist is about the same.  I have a follow up coming up at some point in the future (I sure hope they call to remind me…) and she wants to me to call as soon as my possibly-fibro symptoms start to flare again so she can see me then.

The only medication I'm taking is birth control (for the endo symptoms).  I can't do pills (I throw them back up for whatever reason) and my GI doesn't want to risk the complications associated with a stronger med that could be done via injection since my Crohn's has been in remission without medication for a while anyway.  Nothing else has been diagnosed to be treated yet.

I am working, but sometimes it's a struggle.  I work with people with similar health problems, so I get a decent level of understanding.  My job is somewhat physically demanding though, and often emotionally draining.  Sometimes it just completely wears me down.

As for knowing what condition is acting up… beats me.  Everything has so many overlapping symptoms that it _could_ even be one condition (although testing has determined that to be highly unlikely).  I generally assume the possibly-fibro condition is to blame however, as either I have primarily non-stomach related symptoms, or the stomach symptoms I do get aren't typical of what Crohn's causes for me.

Ugh.


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## carrollco

Since I have so many autoimmune problems from Crohn's to Hashimoto's to Spondylitis,  it is obvious to me that for some reason my body is attacking my body. I've ruled out self-hate, considered all the diet crap out there, and am left with the fact that my mom had Crohn's, my sister diverticulitis,  my daughter UC leaving me with the rest. *sigh* I've learned to self - adjust my thyroid meds, lost the weight to get rid of diabetes, and Remicade has wiped Crohn's off the map for now. So I am feeling pretty good at the moment, oh yeah, SCD diet works on lessening symptoms but didn't cure me and I gave it a good shot. It will lessen symptoms and give Diabetes a run for the money. This is hard, but worth it. And I do sneak a cookie now and then.


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## yosemitegirl

Carollco... For whatever it's worth, I believe that these auto immune diseases have a genetic component. Then whatever is the trigger is the unanswered question. After 45 years with Crohn's and the subsequent multitude of other medical problems, I wonder if having a body that attacks itself is just messed up in ways they haven't yet identified. I don't know of many who just have Crohn's... that being awful enough.

I am glad that the Crohn's is behaving itself. Best wishes to you.

I also want to thank everyone on here for sharing their other ailments. Sometimes I even dismiss my other crap since the Crohn's rules. And everyone around me has a hard enough time with that alone. 

This forum is for everyone to freely list all that they deal with, from minimal to the worst. It is synergistic, it all adds up to interfering with your life, your spontaneity. 

This forum is NOT to compare who has it the worst and make judgments on others' supposed lack of understanding of real emotional and physical pain, or not knowing what it feels to be REALLY sick. Pretty sure each of us knows that stuff all too well. I have empathy for every one of you. It is a very tough hand to be dealt, and play it out to the best of your ability.

Thanks to you all, take care.           Michele Lea


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## afidz

I am stuck between a rock and a hard place...
In 2008 I had emergency surgery on my abdomen that left me with a 12 inch incision. Since then I have had 13 other surgeries trying to either clear infections or correct hernias. I don't know if you would consider this an additional illness, but it is chronic. This is always something that I will have to worry about. Right now, my entire digestive tract is outside of my abdominal cavity, and since there is nothing in the cavity, it is shrinking making it difficult for the surgeons to be able to successfully repair. Because of the amount of surgeries I have had, I probably can't safely carry a pregnancy to term.  There is a lot more behind it that I won't get into unless asked. Its a really big mess. 
Other than that, I probably have AS or some other form of arthritis in my spine and or ribs, hips and knees. I am waiting to be able to see a rheumy, but it doesn't matter anyway because I can't be on any of the meds that will help me until my hernia is finally corrected and heals properly. My mental health is unstable but everything that I have been through, its expected. Everything else that is wrong isn't worth mentioning.


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## cdepaola

UnXmas said:


> I'll join. But my primary illness is a unique genetic condition causing progressive neurological/rheumatological deterioration, with no clear diagnosis. I also have endocrine problems (undiagnosed but including ovarian failure). I have osteoporosis but I barely remember I have it as it causes me no symptoms.
> 
> I find it kind of hard to discuss my other illnesses on this forum. *I'm so much sicker than the vast majority of forum members*, it's difficult to see people saying they are suffering with being ill, when Crohn's is the least of my medical worries. It concerns me that I'll come across as unsympathetic, whilst at the same time it frustrates me greatly to see people so *oblivious to being really sick* (I mean dependent on carers, no chance to work or have kids, knowing it will only get worse even though I'm so young). People don't understand physical and emotional pain.
> 
> That's just something I had to unburden myself of; this thread seemed like a place to do that as perhaps there is someone else feeling the same.



First, I know you didn't mean to have this come off the way that it did but it could be taken very negatively by some.  How "sick" someone is or more importantly "how sick they feel" is relative and different for every single person. Yes some people are sicker then others but how someone physically or mentally feels can differ greatly. 

Here is an example:  I am by most Dr's opinions fairly sick.... I've had crohn's for 15 years with numerous fistulas and perforated bowls that have lead to three resections.  

Thanks to my crohn's I also have secondary Amyloidosis which sent me into renal failure. Six years ago I received a kidney transplant which failed in the first 10 hours due to a surgical error and was cut wide open three times in 48 hours. First to put the new kidney in, second to repair a suture that caused blood to clot around the new kidney, and third to remove the kidney.  Six months later I had a second transplant which was successful but for which I was in the hospital for over a month getting chemo and plasmapheresis to avoid rejection thanks to an antigen that was found late.

Six months ago I suffered a Pulmonary Embolism and over 10 clots in one of my legs, of which the cause is still unknown at this time.

I am a 43 year old firefighter/medic and I continue to work to this day and worked the day before my kidney transplant.  I  ran my first half marathon 6 months after my transplant. People who don't know my story would never say I was sick or think I looked sick in any way. I don't feel sick though I understand and have had both mental and physical pain involved in all of this.  I don't consider myself sick and don't live my life like I'm sick. God only knows how long I'm on this earth and I'm going to take full advantage of it. 

I agree that some people do not understand what being sick really is, I deal with them every day. However they still feel that they are sick and may very well be suffering physically and or mentally. While I may not agree with them, that they are so sick that they need to go to an "Emergency Room", it is not our place to judge. 

With that said I'm glad to join this thread, its some place we can all go to vent or just talk about whats going on.  Someplace we can remind ourselves that other people are sick too and its not just us. Someplace we can give and get understanding and sympathy. Things we all need from time to time.


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## lisakuney

I'll chime in with multiple health issues besides Crohn's. Managing my health is a full time job. ME/CFS, Fibro, Hashimoto's, tachycardia, GERD, arthritis, various and sundry other inconveniences. I am worried I will end up in a wheelchair soon if something doesn't happen with new doctors and treatments for the ME/CFS.


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## Essieluv

lisakuney said:


> I'll chime in with multiple health issues besides Crohn's. Managing my health is a full time job. ME/CFS, Fibro, Hashimoto's, tachycardia, GERD, arthritis, various and sundry other inconveniences. I am worried I will end up in a wheelchair soon if something doesn't happen with new doctors and treatments for the ME/CFS.


Do you mind me asking what your ME/CFS symptoms are? I have some friend with this and have been considering talking to my doctor about it being a possibility for me as we have very similar symptoms....I hope you get some treatment and get on the road to recovery:ghug:


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## Orchid

I'll speak up. In addition to Crohn's I have PTSD from family abuse that means I have panic attacks when I try to look people in the eye and a crippling fear of unfamiliar men. I also have an "at risk mental state" ie I'm suspected to be developing schizophrenia or some other form of psychotic illness but it's too early for a psychiatrist to say for sure.

I was constantly paranoid I was being watched or filmed, that life was fake or some giant Illumanti plot was happening just under the seams. I heard a chorus whispering to me about them. I saw people running in the edge of my vision, when it happened it always came with a profound feeling of violated personal space, as if someone was standing right behind me. Sometimes I'd hear them whisper too. They were talking about me, plotting.

Thankfully instead of pills I was sent to a therapist here named Ron Unger who is an expert on treating psychosis with CBT and strongly advocates against medication in mental illness. That was about two years ago and I still haven't progressed to the point where they can say I'm mad or in the clear. I honestly think he saved my sanity. Nowdays the worst hallucination I see is rats scurrying at the edge of my vision (my apartment is less then five years old and I'm obsessively clean, so I know there's no actual rats).


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## yosemitegirl

Cdepaola... I happen to be one who felt the negativity from this post. Didn't mind the claim that she has it worst, though that would never be my approach. However, the statements that negated others' feelings... we don't know what real physical and emotional pain is, and worse, we don't know what it is like to be really sick. And it was hard for her to read such minor problems. Everyone should feel free to list it all, minor to major, without being discounted.

I received a private message suggesting that I was singling this person out, and to consider editing my comment. I certainly didn't say anything unkind, while this post seemed very unkind. At the least, not understanding at all.

Your story is very inspiring with great points made. Thanks for sharing.

Best wishes to you...     Michele Lea

(Crohn's X 45 years, 10 surgeries and too much other crap to list.)


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## Catherina

Hi everybody,
I just now discovered this new group......
Yes, I am suffering from other 'stuff' as well besides Crohn's
I also have Spondyloarthritis and CIDP, both being officially diagnosed.  Together with these three I also have some other 'inconveniences' like
remvokrano, infection of my facial nerves and a sudden onset of 70% astigmatism which the physicians cannot place (thank God nothing is to be found in my brain).
I am generally trying to ignore symptoms being weary of those pill describing doctors.
Having been anything but symptomfree for eight years now, living in a fog because of medication as well as making it my full time job to arrange appointments, finding medication and going in and out of the hospital I decided to quit all medication (yes, on myself) approx nine months ago.
The only thing I can say is that I have pain, sometimes pretty much everywhere but ................. at least I am me


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## lsgs

Hi guys,

I have other illnesses as well as inflammatory bowel disease. 

The biggie is primary sjogren's syndrome which on the face of it doesn't seem that serious but the long term consequences are pretty horrible. It causes dry eyes and dry mouth as main symptoms. This seems straightforward until if gives you double vision, blepharitis, dysphagia, reflux/regurgitation due to weak pyloric sphincter. Also other exocrine glands are 'dry' so this can be your pancreas (I take pancreatic enzymes). It's also caused autoimmune liver disease.

However, it also causes difficulty having kids. I haven't tried, and we don't know if we will, but I have a specific antibody in my blood which means that I can conceive but will probably repeatedly miscarry. And if the baby survives living in my body, it will possibly have neonatal heart block and need a pacemaker fitted right away. This scares me. 

Due to sjogren's I'm also on my 3rd cancer scare at the moment. Sjogren's causes a 44x increased risk of lymphoma. I have two new lumps in my neck and one is hard and fixed so unfortunately doctors have to suspect it's cancer until it's ruled out. 

Sjogren's doesn't cause me to be that sick, but it probably will make me sick in the future. 

My IBD have been the source of frustration for me as it's been hiding very well and doctors still can't find where the inflammation's coming from. It made me so, so, so ill I totally lost all independence. I couldn't walk, I couldn't shower on my own in case I passed out, I couldn't eat... Now after steroids and LDN I maintain more of a life than I ever, ever thought I would again. But I am totally traumatised by what has happened to me tbh. 

The other things I have are spondylitis which is almost gone on LDN and recurrent cholecystitis which is SO SORE and I normally need to go to hospital for drugs. 

I *really* don't agree with the 'my problems are bigger than yours' thing.


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## ron50

Hi all,
       I have always suffered from "he is big and strong ,can't be much wrong with him". Un fortunately a lot of symptoms have been glossed over by medicos and several early bouts of peptic and duodenal ulcers were put down to lifestyle. Hmmm must be a heavy drinker. Didn't drink. All came to a head in 1998 when I had my first colonoscopy. I had endoscopies up till then. They removed 18 inches of my colon the following day plus thirteen lymph  nodes six of which were cancerous. I was not given much chance of survival because of the aggression of the cancer. I had a year,forty eight sessions ,of heavy duty chemo. Afew years later I lost my gallbladder after a small black stone blocked off my pancreatic duct causing acute pancreatitis. Since then I have developed severe psoriatic arthritis, moderate to severe motor-sensori peripheral neuropathy of both legs and left hand.  I started to suffer peripheral edeema . Urine tesys showed I was losing nearly three grams a day. I have been on various immune-suppressants. I suffered parainfluenza last year . I leaked some troponin, the heart attack enzyme . They eventually decided it was the flu and asthma beating up on me . I wore a twenty four hour holter monitor and recorded 10,299 premature ventricular ectopic beats and several runs of tachycardia. I was put on prednisone initially for the kidney problem. I stayed on 75 mg a day for nearly eighteen months. Did not help my kidneys but now I have type two diabetes and spondylitis caused by osteoporosis. 
    I am now in nephrotic syndrome with my kidneys ,losing around seven grams of protein a day. I had 5flourouricil and levamisole for chemo, cimetidine and somac as proton pump inhibitors. sulfasalazine, arava and methotrexate for arthritis, nurontin ,endep and lyrica for neuropathy, metformin for diabetes ,methotrexate ,prednisone and now cyclosporine for my kidneys. The best they can do for my pain is panadol. I take micardis 80mg and diltiazem 240 mg for bloodpressure. The diltiazem also enhances ciclosporine absorbtion allowing a less toxic dose and slows my heart beat.I take two anti-histamines a day to avoid vertigo.  I still work up to six days a week and am 64 on Sunday . I have survived cancer for over fifteen years and some times wonder if that was not a big mistake... Ron.


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## Orchid

God lsgs that sounds terrible, the most insidious illnesses always take the little details people forget about until they don't have them anymore. May I ask how you compensate for the low levels of saliva?


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## lsgs

Orchid said:


> God lsgs that sounds terrible, the most insidious illnesses always take the little details people forget about until they don't have them anymore. May I ask how you compensate for the low levels of saliva?


Since steroid treatment and LDN my saliva flow is better but still reduced. The major complication of that is swallowing problems which is easily mitigated by always swallowing your food with fluid, which is gross at first but you get used to it. The annoying thing for me is that for whatever reason, my stomach struggles to tolerate water and I just reflux it back up, so it can be difficult having the stomach trouble and sjogren's. There are saliva substitutes but most are for people without teeth and acidic. The ones that aren't acidic are not very effective to be honest. I carry a spray with me when exercising as the mouth gets really uncomfortably dry if you breathe through it. I think the worst thing about dry mouth is when the little dangly bit at the back of your throat gets stuck to the top of your mouth and you have to try to get it unstuck :thumbdown: 

In my job I have to speak face to face a lot and sometimes my mouth gets dry and my words come out wrong which is a bit embarrassing.

Also if you ever get dry mouth, budget a lot for dental work!


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## LodgeLady

Like this thread! My ailments are IBS/Crohn's ( maybe Dr. still wrestling with the Crohn's) asthma ( adult onset), allergies, bee venom allergies, acid reflux and now bile reflux since my gallbladder was removed. 

Still trying to get this asthma under control. Just when I think it is, I get hospitalized for it! Was admitted back in January when I caught the flu. All these GI stresses don't help matters.


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## ron50

Hi Lodge lady flu really seems to knock us around . Until they came up with the asthma dx when I was in hospital with the last lu in November last year I and the docs thought it was pulmonary edeema causing the wheezing. Now I am on symbicort every morning and I use ventolin thru a spacer at night. Ron.


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## lisakuney

Essieluv said:


> Do you mind me asking what your ME/CFS symptoms are? I have some friend with this and have been considering talking to my doctor about it being a possibility for me as we have very similar symptoms....I hope you get some treatment and get on the road to recovery:ghug:


The list I am taking to my new doctor is thus:

Severe, unrelenting fatigue
Post-exertional fatigue for days after I try to do anything
Loss of strength (used to leg-press 400 lbs. Now can't climb stairs)
Loss of stamina
Loss of flexibility
Pain in joints and muscles
Blurring vision, increased intraocular pressure
Elevated white count for 2 years
Brain fog
Sensitive to smells, noise, and light
Irregular heartbeat, tachycardia
Anxiety
Depression
Anemic (needing iron infusions)
Dizziness and balance issues
Severely fragmented sleep (study showed brain "waking" 30X/hour)
Poor temperature regulation (either cold or overheat easily)
Medication sensitivity
Constant nausea
TMJ
Frequent sinus headaches, migraines
and of course the Crohn's symptoms

I hope the new doc listens. I get tired of being minimized because I have a high pain threshold and am not histrionic.

What are your ME/CFS symptoms?


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## BUNKIE10

Thanks for the support group. I have IBS, Sarcoidosis, chronic vertigo, Fibromyalgia and they are testing me for thyroid and addisons. I mean really....where does one stop and the others start. I have had a series of crazy symptoms that started with the Sarcoidosis back in 01 and I keep adding to the list. My doctors are stumped. 
The Sarcoid is my worst so far but went into remission with the steroids back in 03. I was off all drugs till I moved home to care for my aging parents in 04 and you know what stress does. In 06 I ended up back on steroids while my parents were getting worst and to make a long story short the drs left me on a low dose of drugs to control my symptoms. Being so embedded in the care of my folks till they passed away I never noticed that my body was getting addicted to the steroids. After a gallbladder surgery, a bout of breast cancer and my daily struggle with chronic vertigo I just gave up. The fog is lifting but I now find myself with a new crop of symptoms that have no end or meaning.
So yes I have everything but the kitchen sink.:lol:
It is interesting to see what everyone has out there.


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## Lightblb

Hi all, I have Crohn's, and I believe many of my other problems are related. I was diagnosed with "systemic inflammation" so I have painful joints, a crunchy spine, and I have asthma. I also have epilepsy, vision problems, and multiple benign tumors on the bottom of both feet. I have scoliosis, and minor things like hypothyroidism and high cholesterol. But all in all, I think I am doing pretty good. I still have all my body parts except a tooth.
Also, I have no insurance at all. I am on Pentasa, phenobarbital, azathioprine, pravastatin, levothyroxine, and 2 B supplements due to the pheno. My last MRI was in 1996.
I am on the SCD diet for more than a year and am doing pretty good. I find it interesting that people with Crohn's have other auto-immune problems. I am watching my niece as she has developed alopecia (hair loss) and her sister has frequent stomach pain.
God bless you all, maybe we can learn from each other.
Lightblb


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## shawnagio

I believe  NO ONE should judge how someone else feels or if they are really sick or not. That person has not walked in anyone elses shoes nor have we walked in hers. They could be that sick or they could just have no tolerance for any pain--no one knows so  We should all just support--This is not a contest to see how sick this or that person is. It is to find support and maybe just to vent to those that DO understand


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## BUNKIE10

Lisakuney - I would be interested in what your Dr says. I have many of your symptoms also...just named the major ones. Medication sensitivity is a bad one. They can not find anything I can take. Also the sensitivity to smells etc. Do they have any idea what causes your vertigo?
I had a naturopath tell me that a lot of this was Multiple Chemical Sensitivity. There is no ttreatment for that either...just avoid everything.


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## nancy81

Hi my Name is I suffer with Crohn's Disease, 
I also suffer with severe Asthma, I also suffer with severe Depression. 
And it is a daily battle and a daily struggle to take all my pills!!
And it is A struggle to manage all my doctors an Hospital appointments.
And it can get confusing trying to manage all my appointments and 
making sure that I don't forget about any appointments! so that I don't miss any appointments!! :ybatty:
 and I have severe Calcium deficiency, and I have anaemia Due to Iron 
deficiency, So I have to have blood transfusions from time to time. 
I also have vitamin B deficiency. 
I hope that your all keeping well. :ghug:


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## Essieluv

Well, as if I didn't have enough...today I got diagnosed with fibromyalgia as well. Another illness to add to my ever-growing list.


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## carrollco

Orchid: I too was an abused child. I suffer from panic as well. That's why I became a writer. It suits my personality.Though I loath booksignings. People scare me. Criticism even more. But, I have learned to live with it and fortunately, I bear no visible scars or severe mental issues. Well, if you discount panic.  (((hugs)))


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## Jennifer

lsgs said:


> I *really* don't agree with the 'my problems are bigger than yours' thing.


It's all subjective so I'm really hoping that we can all just drop it and let it alone. It was a personal rant and I respect them for being brave enough to say it. This is a safe place to share our feelings so I'd like to keep it that way.


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## carrollco

Anyone have benign positional vertigo? Or may I add, rocks in their ears?


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## ron50

Hi Carrol,my dad used to spend days in bed when he could not lift his head off the pillow. He described it as being seasick on dry land. I live alone and when I had my first attack I thought I was dying. When the ambulance arrived I was on the floor in the toilet. They asked me if it was self inflicted. Just looking up and answering the question started me vomiting again. That was at 8pm at 4am the next morning they sent me home from hospital in a Zofran fog. I take a Phenergan anti-histamine morning and night and it seems to help though I do lose my balance and have had some bad falls. Ron.


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## carrollco

Have you tried canalith repositioning? Omg, it really works! My doc knew about it. No more suffering for days on end.


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## lizbeth

I feel like I'm moaning when I say what other issues I have but here goes . Type 1 diabetes, osteoarthritis in lumbar spine, hands and knees, also disc bulging in lumbar area. Had surgery to correct impingement of my left shoulder and waiting to have right shoulder checked for the same. Had unsuccessful surgery on right wrist to remove a ganglion, sadly the op caused long lasting damage and I have permanent pain when I use my hand. I have diabetic maculopathy in my right eye and have lost 2 channels of my central vision in that eye, my left eye has retinopathy and will need treated at some stage, treatment is not an option for my right eye.  Recently diagnosed with carpal tunnel in both wrists. Multiple joint pains that make me look like an old woman when I move, RA he's been ruled out but symptoms suggest something is going on, sero-negative arthritis has been mentioned? I have a lipoma wrapped around my left Achilles tendon that may need to be removed and of course I have something going on with my bowels thought to be crohns. Will find out on Mon result of feacal calprotectin and then whether I'm going to be offered treatment. 

I feel like piggy in the middle between 2 GIs, 1 says I have scarring so no treatment instead surgery, the other says no it's inflammation so no surgery, methotrexate instead, so I've been waiting nearly 6 months for them to decide and in the meantime I have to rely on a wonderful gp who manages pain relief and apologises that I'm not pain free.

I haven't worked since my wrist surgery 3 years ago, I had hoped to go back and then got tummy problems and would honestly say there is no way I could work atm, some days I can hardly get out of bed. I really hate being asked what do I do all day cos it's so difficult to explain that gettin up and living with so much pain is a full time job?  I'm a carer for my dad who is very poorly and I spend half the week away from home helping him.

I know I'm not the only person who has lots of things wrong and I also truly believe I could be worse.


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## Ki3

Wow I'm glad I found this! Here goes,

I have (obviously crohns) raynauds,
Asthma,
Eczema,
Psoriasis,
Flat feet,
Corrected squint,
I'm being tested for;
Fibromyalgia,
PTSD,
Anxiety,
And will probably develop scleroderma in future according to my doc. I have undiagnosed muscle problems as well as having hypermobile joints.
I have been told It's likely I will battle anorexia (again) and I probably have many other undiagnosed problems.

Such fun to deal with being a 13 year old girl trying to live a normal life.


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## Orchid

carrollco said:


> Orchid: I too was an abused child. I suffer from panic as well. That's why I became a writer. It suits my personality.Though I loath booksignings. People scare me. Criticism even more. But, I have learned to live with it and fortunately, I bear no visible scars or severe mental issues. Well, if you discount panic.  (((hugs)))


What do you know, I love writing too! If I wasn't interested in biochem/medicine I'd probably have focused on writing.


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## Wizbit

Reading some of these lists I feel I have got off lightly! Glad that I don't suffer from a lot of the mental issues mentioned above. I feel sorry for those suffering with anxiety on top of an IBD and everything else…

Anyway, here's my rap sheet:

Crohn's / Ulcerative colitis - mild, but still a bit undiagnosed, even after 6 years. Currently taking 6MP and prednisolone as well as omeprazole for the acid reflux.
Osteopenia - like others here and because of the steroids.
Haemochromatosis - regular venesections required to maintain safe iron levels.
TMJ disorder - causes jaw pain, head and ear aches as well as back, neck and shoulder pain. Take cocodamol for the pain.
ITP - low platelets. Was on prednisolone for this. 
Atopy - slightly allergic to dust, pets, pollen, nuts, raw apple skin, etc. Causes eczema / asthma, but manageable with antihistamines. 



I find it interesting that a number of people here also suffer with TMJ disorder. My dentists says it's due to stress…which is often mentioned as a trigger for IBD flare ups, so there must be a connection.

I have only had days off for colonoscopies and, I think, one day off when I was quite ill. But I have an understanding and lovely boss, so we have managed to work my work around my illnesses and hospital visits.

My doctors, nurses and consultants at the hospital have been great to be fair. The NHS gets a lot of stick in the UK, but they have been really good… it's the getting to see them that is the problem! My GPs have been terrible at trying to diagnose the above and then struggling to justify getting me referred.


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## Nansea

Me next. Asthma since age 8 with chronic bronchitis and pneumonia Crohns diagnosed 1987 age 23 after 4 years of diagnostic craziness.  Proctocolectomy 2007 with permanent ileostomy,  spondylosis,  Psoriatic Arthritis and Lupus. Benign tumors in girl parts but not surgical candidate due to scar tissue and adhesions, endometriosis. Fun fun fun.  I am allergic to most meds and have exhausted pharmaceutical options for crohns, spondylosis and psoriatric arthritis. Prednisone kicks me into diabetes. My skin condition related to my lupus along with my adhesive allergy make it nearly impossible to keep an ostomy appliance on so I am frequently covered in ick that along with my snake like appearance makes me quite a beauty haha.  But on the bright side I don't wear diapers any more (I wore them through my late 30s.  For whatever reason I have always worked full time and I still do.  No heavy lifting though, I am a hospital administrator.  
Glad there is this group here,  I have had a hard time finding a place to discuss or check with others with multiple issues that complicate each other. Nansea.


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## Essieluv

I have an allergy to adhesives as well. I cannot use typical IV tegaderm and tape, which makes hospital stays and procedures a pain. It's weird, I just developed it in the last year. One ER nurse told me it is common in fair-skinned, red-haired people. (Although I wouldn't say my hair is red, more strawberry blonde).


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## mg12061

Hi I just found, this group. I'm a little shocked at how many of you suffer from other ailments. My daughter is 17and has Crohns disease. She was diagnosed a few years ago and has been pretty much symptom free until recently.
 My daughter has several other health issues.
She was born with Down syndrome, and was very healthy until she was almost 5. She suffered a couple of strokes an was diagnosed with a rare neurovascular disease called Moyamoya. She had several strokes one very severe and 2 surgeries to treat the disease(there is no cure). She also has been diagnosed with Hashimotos, celiac, intestinal dissmotility  (had cecostomy surgery 12/12 placing a Mic-Key button to flush her intestines with golytely daily), Hydronephrosis caused by neurogenic bladder(had appendicovesicostomy a stoma in her belly to catherteize her), ovarian cysts, She has several orthopedic issues caused by the Down syndrome and strokes, AAI (an instability in her neck), slight scoliosis, she wears an AFO on her right leg and a KAFO on her left for stability and preservation of her joints. She gets Botox in her left ankle for tight heel cords. She's been having problems with her legs lately and not wearing her braces. Not yet sure what's going on with this. She takes asprin to prevent more strokes, Delzicol for crohns, Synthroid for hashimotos, and Oxybutinin, for bladder spasms, and Vitamin D. And YES the most difficult part is trying to figure out what is causing any symptoms she has on any certain day. Her communication is difficult especially about how she feels. It's been very interesting reading a your stories. Thank you for sharing...
Mary G.


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## carrollco

Orchid: Good for you! Great choice for a career.


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## SarahBear

carrollco said:


> Orchid: I too was an abused child. I suffer from panic as well. That's why I became a writer. It suits my personality.Though I loath booksignings. People scare me. Criticism even more. But, I have learned to live with it and fortunately, I bear no visible scars or severe mental issues. Well, if you discount panic.  (((hugs)))


Similar situation for me, as well.  However, I've been unable to write since the abuse ended, oddly enough.

I've always been uncomfortable in groups of people - I often feel that they're talking about me and judging me.  That's getting better, but it still occasionally causes me problems.  More bothersome nowadays is the feeling that I don't have anything going for me - I have no personality, no positive traits.  I know this stems from the situations I was in when younger, and is being triggered by other things in my life currently.

Looking at me though, no one would know.  A coworker of mine was abused and abandoned as a child, and has extreme difficulty interacting with others.  If it's mentioned, someone always says something along the lines of, "She had it rough.  How would you feel if your parents didn't care about you?"  Weeeellll…


----------



## Jajabinks

How does everyone manage their Spondylitis?  I am suffering so much.


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## grantw1960

So you will know a little more about me.Osteoarthritis,Osteopirosis,Crohn's Disease,Primary Progressive Multiple Sclerosis,Emphesema.Operations for Crohn's--3.5ft small intestine removed,large portion of anus removed.Just last month,I had my first break because of osteopirosis.I am 53 and have to be put in a home.


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## Orchid

SarahBear said:


> Similar situation for me, as well.  However, I've been unable to write since the abuse ended, oddly enough.
> 
> I've always been uncomfortable in groups of people - I often feel that they're talking about me and judging me.  That's getting better, but it still occasionally causes me problems.  More bothersome nowadays is the feeling that I don't have anything going for me - I have no personality, no positive traits.  I know this stems from the situations I was in when younger, and is being triggered by other things in my life currently.


I understand the discomfort with groups perfectly. Except instead of talking about me behind my back and judging me, I feel like someone is going to beat the shit out of me or yell at me. As a result I can't stand really exuberant people either, they just make me flinch and live in waiting for the getting hit and/or yelled at.

And that feeling of worthlessness is a constant companion too. I hope you get find a way to feel better about yourself.


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## ron50

Jajabinks said:


> How does everyone manage their Spondylitis?  I am suffering so much.


    My Spondylitis was dxed by my rheumatologist. I had an Mri which showed a mess at the base of my spine. He muttered something about lars fractures and displacement and nerve entrapment on one side. I asked what I should do for it and he said see an orthopaedic specialist. I cannot afford the ones I have let alone the ones he suggests I see. Lasat one was a neurologist who charged me $500.00To tell me something I already knew ie I have neuropathy and he cannot help me. I am sorry you are in so much pain ,if I find anything that helps I will let you know,Hugs Ron.


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## carrollco

My abuse was physical and mental so I freak if someone yells at me or criticizes me because that means hours and hours and hours --no sleep-- and hours of screaming and what not.


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## carrollco

Stupid cell phone... OK so you other victims of abuse. You can and you will get better. Time has a way of softening the memories. I am old now so I speak the truth. However, to have lived through that then get Crohn's really sucks. But you can get through that too! And here's the trick. I stopped focusing on myself and started asking this question: What can I do to make someone elses life better? When you sign a publishing contract you have to agree to having a Facebook page,  a blog,  a website. I remember the first time a publisher said that to me. My nerves jumped outside my skin. I was a nervous wreck. I made some mistakes, dumb ones, but hey I am dealing with panic here. Eventually, I asked myself my question. Since I was clueless, no mentor for me, I started featuring other authors on my blog, then I started blogging weekly about Crohn's. One step at a time, one baby step at a time. I used my real name because I wanted to make sure I was not ashamed of who I am. Not abuse shame or Crohn's shame. I decided to OWN myself with all my quirks. You do this one baby step at a time and you walk through the panic and onto the otherside. It's not so bad over here. I still panic and I still scare easy. But I walk through it instead of allowing it to dictate to me.


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## Jennifer

Definitely carrollco.  When my panic attacks started they ruled my life. I would exit stores without making my purchase and sit in my car and wait for it to pass because I was afraid to drive home to my safe place. I missed school and missed out on a lot of things because I was afraid to drive for a while (the panic attacks started happening while I was driving). It continued to get worse even after moving back to my home town. I became home bound. Later I feared being alone, then I feared the hallway and bedroom (no easy escape route). I started becoming fearful of my own thoughts and imagined terrible monsters/demons and refused to look into mirrors because I was afraid I would see them standing behind me. I never saw anything but did start having sleep paralysis where I did see shadows and figures and people entering the room to get me and I couldn't move. I refused to shower unless my husband was home. Even then I took quick ones because I was afraid I was going to pass out. I was also afraid to be on the computer when I was alone in the house because I couldn't see behind me and was afraid to turn around. I'd basically back myself into a corner so I could see the whole room (watched a lot of TV). 

I was physically abused as a child (slapped around (dad broke my nose), hit with any old object lying around (lamps, brushes whatever they could grab, thrown against the walls like a rag doll and one time dragged across the floor by my shirt which caused burns under my armpits (that's all I remember from that incident, my dad said he was trying to get my shirt off but I refused yet my sister remembers him being angry with me, grabbing my shirt and dragging me across the carpet then throwing me against the wall). I don't remember being sexually abused by anyone as a child but it is possible. My grandpa is a known child molester (the one I'm a caregiver for) and there was a short man from the church we went to who always creeped me out and I don't know why. We were also taken away from our parents because of the abuse for a year. Went into foster care first for a couple months and then into my grandparent's where we were beat with my grandpa's belt. I was around 3 years old when this took place so some sort of sexual abuse could have happened by anyone during that time but I simply don't remember yet I do know that my greatest fear has always been rape. 

I went and got help by going to the county mental health department where they evaluated me and diagnosed me with Agoraphobia, depression and of course panic disorder. I was sent to an awesome psychologist who helped me not only talk about it freely but also taught me different coping tools for when then anxiety started so I could try to avoid a full blown panic attack. Distraction works best for me yet there are many other tools out there. I also take Klonopin twice a day now to help relax me. Antidepressants always made me too tired and unable to function so the benzos always worked better for me since anxiety and depression are related, treating one can help treat the other.

I'm still not better and maybe never will be 100%. Only way to do that is to completely forget what's happened and that's not possible but the anxiety, depression and fear can diminish tremendously with help over time. TIME is the main factor here. Everyone is different. It's been 4 years since my most extremely fearful time and now I'm able to walk around in my house without any problems. I'm able to relax. I still think about it from time to time but my husband's trick helped a bit. He said that if something scary invades my pleasant thoughts then I should crush them, banish them from my peaceful place. Personally I like to imagine stabbing them with a sword and seeing them disappear in the breeze but over time you think about these things less and less. Keeping busy with something else also helps a lot. Occupy your mind with something else so you don't dwell on the fear etc. Easier said than done but it takes practice, patience and time.


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## SarahBear

My abuse was entirely psychological - my abuser was never in a state to be capable of physical abuse, or I have no doubt she would have tried that as well.

My mother was never a responsible parent.  However, we lived next door to my grandparents when I was young, so it wasn't much of an issue - I walked to their house to eat.  Although he lived with us, my dad was rarely an active parent as he arranged his work schedule to easily avoid my mother - he worked nights and slept during the days.  When I was in fourth grade or so, my parents divorced.  My brother decided my mother abused him physically (she didn't, although that's about all that can be said for her) and moved in with our other set of grandparents.  My mother became depressed and was constantly agitated.  I moved next door with my grandmother, and eventually, Grandmother convinced my mother to move in as well (she owned the house I grew up in as well, and if we all moved into her house, she could rent that one).  About then is when my mother's drug addiction began.

I relied on my grandmother at this point and tried to avoid my mother as much as possible.  A few years later, my grandmother died and my mom took another downward spiral.  She was hardly ever conscious - I'd find her passed out on the floor on a regular basis, often with the pills she dropped scattered around her.  She would take a few pills before driving me places - she would be fine when we got in the car, then a few miles down the road, she would start losing control of the car.  This happened on a regular basis and I'm surprised I survived it.  I was around thirteen at this point, and I felt as if there was nothing I could do when I was stuck in these situations (I didn't have a cell phone to call anyone to pick me up) so I gritted my teeth and woke her up every time she veered off the road.  She was extremely agitated, especially at these times - she felt as if I were constantly criticizing her and took everything as a personal attack.  

My grandmother had always kept her house immaculate, but my mother seemed to be intentionally trashing it.  She's a hoarder and a generally filthy person.  If I tried to clean something, she would trash it again when I went to school.  The house wasn't fit for a human to live in.  On top of that, the utilities were frequently cut off because she couldn't or just plain didn't pay the bills.  She always laid her financial concerns on me - constantly telling me that she didn't know how she was going to make ends meet.

My father and my other grandparents knew the situation but pretended they didn't.  My brother (who left before the real problems started) was too busy playing the victim to care what happened to me.  I felt as if I were completely on my own - and I was.

This continued until I turned eighteen and moved out.  I spent these years filled with an indescribable anger - it felt to me like my entire body was filled with fire.  On one hand, I knew what she was doing was wrong, and that it was wrong for everyone else to ignore it - I knew I deserved better than that.  On the other hand, I couldn't help but wonder - why was I not good enough?  The problem began when my brother moved out and stopped talking to her, so obviously he was more important to her than I was (he was and still is the favorite - she never made any effort to hide that).  I felt insignificant and embarrassed.  I distanced myself from others because I was afraid they would find out about my mother.

I ignore her now.  Her number is blocked in my phone.  Her constant drug use has damaged her in irreparable ways.  She's on the emotional level of a small child (telling her you're busy and can't talk on the phone or give her a ride somewhere sends her into a tantrum) and it's not healthy for me to deal with that.  I can't deal with it, and I shouldn't have to.  She says now that she's stopped (for my niece, she says), but all she's done is tone it down.  Anytime she would talk to me, it would end up with her furious over some tiny thing - and when she's furious, it's a solid day or even two of angry texts.  She'll say anything she can to hurt.

I got through those years by telling myself I didn't deserve it, even if I sometimes had trouble believing it.  "You'll get out of here, and you'll show them all that you're better than this," was my constant mantra.  I told myself that she would be sorry someday for what she did to me.  I'm still waiting for that day, but it'll come.

So, that's the short version of things.  I feel guilty for classifying that as abuse but I'm not sure what else to call it, either.


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## Jennifer

No I'd say that's abusive for sure and neglect, child endangerment etc. You could have been taken out of her custody as well if someone ever reported it. I'm sorry you went through all that but after meeting you, you are a very kind and caring Bear and I love you for it (not the abuse of course, no one deserves that). :hug:

I wasn't done, hit the wrong button.  I can relate to the hoarding. Both my parents are hoarders and that's another one of the reasons why we were taken away. It wasn't just stuff, there was trash, it was dirty, moldy, bugs everywhere and just plain gross. Once we were placed back into our parents custody the house was inspected every now and then and my parents made us clean our room. We developed a method of holding onto the bed frame and pushed with our feet and slid all the toys, clothes and trash under our beds by gliding across the floor so it looked clean. Was weird seeing the floor.


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## SarahBear

:ghug: :ghug: :ghug:

My mother was/is the same way - not just stuff, but trash.  One of the biggest problems was dishes.  She piled everything in the sink, and was apparently opposed to even rinsing a dish off.  There was an entire summer that I ate nothing but pop-tarts because there were no dishes clean to cook with (I couldn't face that mess myself - it covered the counters, the table, and she even carried some into the basement shower), and the following school year, the only time I really ate was at school.


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## Jennifer

Same here. No clean dishes. My mom would say, "don't use that, it needs to be bleached first." Well then do it already! As I became a teen I started drinking alcohol and came home one night drunk. Didn't want to wake the parents so I didn't turn on the light and was SUPER thirsty. My mom would sometimes make tea in water jugs and they'd either be in the cram packed fridge full of molding crap or on the jam packed pile on the table. So I grabbed this water jug that looked like tea. I gulped it. Turns out it was grease saved from and for... something. I can't remember if I vomited but I believe I just spit it out and hovered my face over the dirty dishes to get at that nasty tasting tap water directly from the faucet. So gross.

I must admit though that I do tend to hoard sometimes and I'm trying to work on it. My main issue is keeping up with the cleaning, especially the dishes. I did so much better when I lived in a place with a dishwasher. I miss having one.


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## SarahBear

Jennifer said:


> I must admit though that I do tend to hoard sometimes and I'm trying to work on it. My main issue is keeping up with the cleaning, especially the dishes. I did so much better when I lived in a place with a dishwasher. I miss having one.


I have the same exact problem.


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## Orchid

That's abuse, plain and simple Sarahbear. Anyone who tells you otherwise is trying to trivialize your experience.

My story is similar. My father was always an alcoholic, and a hardcore redneck. Half of his vests are covered in Confederate flags or eagles and he refers to the American Civil War as the "War of Northern Aggression". He loves hunting and drinking and that sort of thing. He had scraggly beard that looked like dead Spanish moss hanging off his face, that and his eyes are the only thing I can remember about him anymore.

I was quiet, sensitive, strange, and always described as a "a bit distant". Until the third grade I was thought to be seriously retarded because I couldn't read. Until then the abuse was mostly lowgrade, I was spanked from time to time. And while I would classify physical punishment as abuse it barely rates compared to what was to come.

It turns out I had a mild form of dyslexia called dysgraphia that interferes with my ability to read and write, this, along poor teaching had held me back. When things clicked with proper tutoring I suddenly went from being the slowest student in the class, my parents being told I'd have a life of remedial education, to being the smartest student in the room. I was in every accelerated student program possible within a few months. And that is when I heard the first heard the worst phrase you can ever tell your child, something that'd haunt me for the rest of my life, hearing it still makes me want to cry and brings all my bitterest memories to the surface.  It would later go on to be one of the things the voices in my head would use to mock me the most.

"You have so much potential!"

My teachers beat me with this phrase. I was never a strong student. I may have had natural gifts but I was always easily distracted and never really motivated, I was more interested in videogames or cartoons and various things a ten year old kid would enjoy. My mother tried her best, but could never really instill a work ethic in me, soon she would join the chorus of my teachers and every adult around me.

"You have so much potential!"

"Why don't you just apply yourself?!"

"That could have been you getting that award, if you tried."

Moments like these defined the rest of my childhood.

All this just made my father hate me even more. I was never interested in hunting or his business or proper masculine pursuits. I loved the arts and sciences when I wasn't stuck in childish pursuits. I became a receptacle for all his frustrations. I was constantly yelled at, I still remember the worst tantrum he threw at me during my early childhood. He screamed at me about how I'd die under a bridge if I didn't learn how to work hard. I cried for the rest of the day.

My little sister made things even worse for me, as she grew it was obvious she had none of my issues. She was outgoing, cheerful, not gifted but a hard worker whose grades were always As and Bs. Even better she was a tomboy, a perfect child for my father. She was the blatant favorite.

By the time I finished middle school my parents had simply...given up on me. My mother doted on my little sister and my father took her hunting and taught her about all the things he valued. I was just a dirty family secret that happened to need to eat. I was never thrown out or starved, I was simply fed and taken to school. Otherwise the only attention I got was more yelling or beating from my father when another report card full of Ds and Fs came back from school.

"Why can't you be more like your sister?"

"Are you some dumb faggot?"

My entire life became hiding myself in fantasy and burying report cards. School was a place I went to get bullied by teachers as much as other students. Occasionally one tried to motivate me to do more, seeing an earnest intelligence that was curious, but they never really got through. 
This pattern continued until the 12th grade, when the matter of my number of credits came up. There was no way I could graduate on time, I was enrolled in remedial courses, just like my parents were told I'd need when I was in the 2nd grade.

It was there a teacher finally got through to me. He was named Mr. Z. I found his class better then expected for a remedial course. He said I reminded him of someone, himself. We talked on and off after various classes and he outlined a simple course of action for me, the one he took to get through the school system and used to make it into college.

I'd drop out of high school and take my GED, then apply for the same sort of college he attended. A Great Books college. A Great Books school instead of focusing on the traditional college model used a curriculum based on reading and discussing the "great works" that make up the core of Western thought. Starting with the ancient Greeks in the first year and finishing with the likes of Freud and Nietzsche by the fourth. They were places where those who suffered serious issues in the normal school system were known to do well. The most famous of these schools would probably St. John's College of Maryland.

And so that's what I did. I dropped out of high school, took my GED and passed easily. I got my various reference letters, including one from Mr. Z, and sent them off. I was hopeful, Great Books colleges are not particularly large but are known for their high rates of acceptance since not many seek them out, St John's for example, has an acceptance rate in the 80% range.

I was rejected by every single one.

I was crushed, the few teachers who had supported my efforts at the time simply vanished off the face of the Earth. Around the same time, my father's alcoholism was escalating. He was furious almost every night, when my sister hit her teenage years she stopped being the perfect child for him and his rage at me intensified. It was another argument we having, not unlike the thousands we've had before. I called him an alcoholic piece of shit who hid behind a bottle and societies ideas about masculinity.

He replied with attempted murder.

He slammed me against a wall and tried to strangle me to death, staring at me with his cold steel blue eyes the whole time. The only thing that likely saved my life was my mother walking in on the incident in progress. After that his life almost entirely unraveled, my mother stopped talking to him and his marriage, already sick, withered and died. He fled the house, fearing I would press murder charges. My mother never let me and I regret it to this day. 

After that my mother warmed to me when she realized we were like souls. Quiet people who enjoyed order and stability who didn't do well in modern society. Soon she was vomiting all her issues and frustrations on me. It was far too much for my already burned out emotions but I lived with her for another four years, doing nothing but listening to the sound my past made. 

After that, my story continues as I've already told. I started having serious symptoms of psychotic illness, got on disability, discovered I was transgender and eventually moved out on my own. I can still hear the echoes of my childhood and teenage years in my ears every morning but I feel like I'm on the slow road to recovery. Maybe by the time I'm 30 I'll be a functional member of society.


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## Cat-a-Tonic

I'm practically crying while reading everyone's stories of childhood abuse.  I just want to give everyone a big group hug!

Since this is the thread about having multiple illnesses, I'll start by saying I have some form of IBD (not fully diagnosed yet), some form of arthritis (also not fully diagnosed), GERD, and something called "focal nodular hyperplasia" which causes benign tumors on my liver.

As far as mental illnesses, I'm pretty sure I have OCD.  My dad and grandma are hoarders and my grandma is also a compulsive hand-washer.  Particularly as a child, every time I went to visit my grandma, all I ever heard from her was to wash my hands.  "You're going outside?  Wash your hands.  You're coming back in?  Wash your hands.  You're going to eat?  Wash your hands.  You finished eating?  Wash your hands."  And so on.  She used to have a huge house that was full of stuff that she hoarded over the years (no garbage thankfully, just tons of stuff).  My little cousin went up to my grandma one day and said, "Grandma, when you die, am I going to have to clean all this stuff out of your house?"  My grandma got a mental image of a little child having to clean her mountains of stuff, and that actually got her to purge a lot of it.  My dad is getting bad though with his hoarding, he's got paths through the piles of stuff.  He has thousands of VHS tapes and zillions of CDs.  Lately he does this thing where he'll go on itunes and download a bunch of random podcasts, then burn them onto CDs.  Sometimes he gives me CDs of podcasts - they're old and not relevant and not even that interesting (he gave me one about the royal wedding, I don't care and wasn't that like a couple years ago already?).  I don't really understand the compulsion to do that kind of thing - but like some others have said, I do feel the tendency to hoard anyway.  I tend to hoard things that appeal to me, things like nail polish, yarn, workout clothes, and especially food.  Sometimes I freak out and think I'm turning into my dad & grandma, and I'll purge a bunch of stuff.  But yes, I'm pretty much a hoarder at heart too.

I didn't experience abuse like others in this thread have talked about.  I can relate to some of what you guys said, though.  Like SarahBear, I was not the favorite.  Well, I was for the first 5.5 years of my life until my brother was born.  I was an "oopsie" baby and I came out all wrong - mousy, shy, bookish, weird, a girl.  My brother was planned and he came out just right - blonde haired, blue eyed, athletic, charismatic, outgoing, male.  I was ignored from the moment he was born.  Whenever I watch the Breakfast Club, I always relate so much to Ally Sheedy's character, particularly the part where they ask what her parents did to her and she said, "They ignore me."  My parents ignored me - I had headlice at age 13 and they didn't notice.  I was anorexic from about ages 16 thru 19, I got frighteningly noticeably thin, but they didn't notice.  I was suicidally depressed at about age 12 and actually put a razor to my wrist (couldn't cut myself though) and I spent the vast majority of my time in my room by myself, but they didn't seem to notice that either.  Basically I needed help but nobody even recognized that, let alone got me any help, so I learned how to help myself and I somehow got through it all relatively unscathed (at least physically).  

Oh, and the other thing my parents didn't seem to notice is my other probable undiagnosed illness - I think I have Asperger's.  I fit pretty much all the criteria, I was a super bright child and I tend to obsess on certain subjects, but I was also weird also and never fit in or knew how to talk to other children (as an adult I've sort of semi-mastered small talk - "Wow, this is some crazy weather we're having!" and I've learned that when people ask, "How are you?" I should say "fine, and yourself?" rather than just saying "fine" sullenly and shutting down the conversation - I'm still very socially awkward though and have a really hard time with eye contact).  As a toddler I tested off the charts for intelligence (when shown a picture of a dog, most 18 month olds say doggie or woof woof, whereas I identified the breed and said "collie"), but there was always something a little bit "off" about me too, yet my parents never had me tested for anything.  As an adult, I have googled and taken online tests and that kind of thing, and there seems to be a high likelihood that I'm an Aspie.  I even have some of the lesser-known Aspie-esque quirks - I have some hypermobile joints (hypermobility is apparently really common in Aspies) and I hate hate hate tags in my clothing (also super common with Aspies & Autistics), I'm very clumsy, etc.  Being an Aspie could explain some of my digestive issues too, as tummy troubles are also very common with Aspies & Autistics.  I'm terrified to be tested for it, though - if I am an Aspie, then what?  And if I'm not, then am I just a really awkward quirky jerk?  So I still haven't worked up the courage to ask my doctor to be tested for Asperger's, as I'm not sure I want to know for sure or what I'll be able to do with a diagnosis like that, and not having Asperger's wouldn't even give me an exuse then for why I'm weird and shy and don't like talking to people.


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## cdepaola

So many things I'd like to say but it so hard to put in the expression that's required. 

I too would like to give everyone a hug.  

We all grew up different and had different challenges and fortunately or unfortunately continue to deal with physical/mental challenges.  For me I find my challenges to be fortunate and I would not trade any of them for what some would call a better life.  My issues and challenges are what define me as an individual.

I take inspiration from two vastly different places. During my months of hospital stays I've always gone to the pediatric units to volunteer my time even when I felt like shit. The strength and general positivity these little kids exhibit while fighting rare disease and cancer is unbelievable.  I also look to the animal kingdom and specifically dogs but really this is true in all animals. No matter the obstacle they work through it and live. Remove two legs from a dog, any of them, and the dog will learn to walk again. They just keep going.

We get the cards we get and it's up to us to make the most of them. Find things that make YOU happy and DO THEM. 

As someone who has always been quiet, shy, introverted, afraid of rejection, afraid to talk to people or look them in the eyes, afraid of disappointing people I can now say I've found it FAR easier to just be happy then to worry about all of those things.

This is a rant and may make little sense to anyone but to me.  Living a life where you wonder if today is the last day causes you to refocus and just live for the now. It also makes you a little crazy which I'm ok with 

Sorry


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## Orchid

I have the exact same obsession with nail polish Cat! It's just so fun to have all these pretty pretty colors. My favorites are really nice blues with a cute shimmer and deep purples, what are yours?


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## Cat-a-Tonic

Orchid said:


> I have the exact same obsession with nail polish Cat! It's just so fun to have all these pretty pretty colors. My favorites are really nice blues with a cute shimmer and deep purples, what are yours?


It's kind of funny actually, when I first got sick I got really depressed, and any time I had to go to the doctor or have a test done, I'd buy myself a bottle of nail polish to cheer myself up - it was inexpensive, pretty, and gave me a little bit of happiness in an otherwise crappy situation.  So as a result of many doctor visits and tests, I amassed a huge amount of nail polish very quickly!    As for colors, I prefer blue but I'm a sucker for pretty much anything sparkly.  I have 7 bottles of nail polish next to my computer as I type this and they're all sparkly (I line them up in front of my pill bottles so that I see pretty things before I see my meds) - in front of me right now are sparkly silver, sparkly silver & blue, sparkly blue with a bit of orange mixed in, sparkly fuchsia, sparkly purple, sparkly turquoise, and sparkly multi-color.  I apparently need to own all the sparklies.


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## Orchid

Well of course you do, they're adorable! Right now my favorite is this sparkly iridescent sea green polish I have. It goes on terrible though! So I mostly just look at it.


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## valleysangel92

I just wanted to say, that you are all so brave to share your stories like that! It really touched me, and I cant imagine what it must have been like for you all, you are truely inspirational! 

I wasn't abused as a child, I'm lucky to come from a really supportive, tight-knit family, but I did suffer relationship abuse for around a year and a half (started age 17). It started off as smaller stuff, like aggressive shouting, backing me into corners, threats etc, and it was so gradual that I don't think I noticed a change for a long time - when it felt too late to do anything. Gradually, things became physical, starting with a slap or a shove, growing to neck grabbing etc.. and eventually sexual. I still can't talk about it in much detail. I jump when men raise their voices, and can't stand people touching my neck or grabbing my wrists, I also struggle being in large crowds and still shake when men I don't know approach me when I'm alone. I have, however, managed to get into a strong, healthy relationship with someone who is incredibly patient and understanding. 

I want to thank you so much for sharing your stories, what I went through was tough, but it seems like nothing compared to what you guys had to deal with, I can't imagine what its like be treated like that by your own family you are all so strong, and take it from me, you are all amazing people. I hope that you all have people who show you that in your lives. You are proving those people who put you down wrong every day. Don't stop fighting.


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## carrollco

Oh my. Well, my dad died when I was 5. I was in the house when it happened. My brother says he was shot, I was just a witness to the bloody bathroom and have no recollection of anything else. By this time, I was partially deaf but no one noticed. I read lips quite well. My dad was mixed up with the Chicago mob. They always promised my mom they would take care of her if anything happened. They didn't and my mother became a complete alcoholic. My deafness was discovered in the 2nd grade by the school and surgery pretty much corrected it. Scared the hell out of me. Suddenly, I could hear. I taught myself everything, became pregnant at 14 and dropped out of school. I married my daughter's father and the marriage has lasted to this day. 44 years in October. I was physically abused by a local businessman and when my mother found out I was told to keep my mouth shut. I was 7. I never ate a fresh vegetable until my husband's parents introduced me to them. The literally bought me from my mother for cold hard cash so I could marry my husband. Disgusting. I was always curious and I would red anything I could get my hands on. Including advertisements. Lol We both went back to school, worked hard, and graduated. I eventually became a CEO until the panic I had fought so hard to overcome disabled me. Then Crohn's entered my life. So, I became a writer. We had three children and now we have 7 grandchildren.  It took me a long time to heal and I believe that no matter how old we get we carry scars. Some are thicker than others. Now I have to decide to whether or not to hit the send button.


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## carrollco

I hate cell phones. The decision was taken out of my hands.


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## ron50

Saw my nephrologist yesterday. Three months ago when I started on cyclosporine my protein loss was around 7 grams a day. My response to cyclosporine has been excellent and I have already dropped to around 2 grams loss a day. I spoke to him about my liver function results and he agrees that I have been suffering mild but chronic auto-immune hepatitis for quite some time. Nearly all of my elevated liver functions are back in the black. I saw my gp the same morning . He has referred me to a podiatrist. My spondylitis is getting worse . My right shoe (I can only wear Dunlop oc volleys because of neuropathy) has worn out on the outside of the shoe above the sole so I am literally walking on the side of my left foot.He hopes the podiatrist can make some inserts to straighten my foot and take some strain of my back and hips. Ron.


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## Banshee

Hi,

My father have hade IBD for a long time(probably 20 years), today he is 55 years old.

He was going to regular checkups(endoscopy) every year and from time to time thay found infection and polyps, the polyps was burned away. Thay was never sure if it was Crohn´s or Ulcerative colitis, thay did never find any trace in the small intestine.

He have been on diffrent IBD medicins like cortisone and asacol.

For littel more then a year ago he started taking blood pressure medecin. About 1/2 year later he began to get problems in his body, he was vary tired and got pain all over the body(Most of the pain was in armpits). There was also a sign in the blood test that he got some kind of infection but thay did not find anything.

He hade hade problem with the prostate before and was thinking that this might be the same but more seriously. Even if the prostata was slitly bigger(felt like sitting on tennis ball) they did not think that this was the problem.

He was on diffrent antibiotics but nothing helped.

a couple of month later thay did CT scan and found a black area on the colon. The followed up with a endoscopy and found cancer!

A operations was done where thay removed the entire colon(removed as many glands as possible that later showed signs of cancer). This was a hard blow to his psyche, he become depressed, most about the bag on the stomack.

He was set on cytotoxin to remove any cancer that might be left in his body.

The problem is that his symtoms : vary tired and pain in body(sometimes like needles) is still there? He have to rest alot. 

Yes he got some extra symtoms from the cytotoxin but the wors part is still the former symtoms(vary tired, pain in body). Thanks to this he cant do much and this is also vary frustrating for him(he use to be active).

He have tried to go back to work but he can only be there for about an hour.

Cancer in the colon is a big thing, but it would have been ALOT easier to handle if he did not have this other symtoms. The doctors do not find what could cause these problems.

Have anyone of you heard of these symtoms? Maybe anyone here knows what it could be?


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## Shortee

Hi Everyone,

I'm a newbie and was diagnosed with Crohns this week but I think that I've had it for years. I also suffer with Psoriatic Arthritis and depression. Over the last 8 years I have had a pulmonary embolus, 18 months worth of surgery for rectal abscesses/fistulas, gallbladder removal and umbilical hernia repair.

I'm really struggling to get my head around it all and although I have a fab GP and several consultants everything takes so long to get answer too.

My Crohns consultant wants me to start a 3 month course of steroids but I have managed to delay this due to my daughter getting married next month.

I'm already taking Sulfasalazine and Duloxetine.... And know this is only the start. ::confused2::confused2::confused2:


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## DougUte

Ok, I'll join this group. Here is my illness list. 

1. Crohn's - this is at the top of my list as I find it the most life altering. 

2. Essential Tremor - My hands, legs, and sometimes my head, shake. For no apparent reason. Makes me look like I'm nervous. I include this link because most people have never heard of it.  http://en.wikipedia.org/wiki/Essential_tremor

3. Depression - CD and ET are enough to cause this!

4. Sleep Apnea

5. Hypertension. 

5. Psoriasis (very minor case)


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## theOcean

Guess I might as well join here, too. I have Crohn's Disease, Restless Leg Syndrome, Delayed Sleep-Phase Syndrome, Insomnia, Social Anxiety, and Eczema/Psoriasis.  Fun stuff. Also tentative PTSD diagnosis.


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## DougUte

Oh, I nearly forgot....  I am being tested for Diabetes this week.


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## pink&green

Count us in.....
The last two months have been crazy hubby has been diagnosed with severe asthma (given inhaler)bronchitis, COPD( never smoked a day in his life) did work 24 yrs in plants though and sleep apnea. He also has been diagnosed with kidney problems left kidney has stone right kidney has mass we follow up with urologist today about mass in right kidney, over active bladder. Arthritis in knee, severe joint point and high blood pressure.


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## theOcean

Oh goodness  Good luck to your husband -- I hope he's able to get treatment to get some of these things resolved. I've heard how incredibly painful kidney stones can be.

Has he had any luck treating his sleep apnea? My grandmother suffers from it as well.


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## pink&green

Thank you Ocean, right mow he is doing the testing to see how sever his sleep apnea is there monitoring his sleep with machine that he wears at night. I notice since his breathing treatments and daily inhaler his snoring is  a little better can finally get some sleep lol. His Pulmonary Dr thinks once they get his asthma/emphysema under control that should help with his apnea.


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## theOcean

I just had a sleep study done in April, so I can imagine how that's probably going. Hopefully you get the results soon!

And that's good that the inhaler and treatments are helping. My grandmother's was severe and she was told to use a machine to help her breathe at night, but she's been adamant about not using it. "I'd rather die in my sleep!" (She's very melodramatic.)


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## Guest323244

I have several diagnoses, other than Crohns, Aspergers probably being the most damaging, as I believe it has led to me developing a couple of other conditions.


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## DougUte

DougUte said:


> Oh, I nearly forgot....  I am being tested for Diabetes this week.


Tests came back negative (Yeah!). But I will get tested again in 6 months.


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## theOcean

Yay! Congrats. I'm sure that's a huge relief.


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## valleysangel92

So today, I added Fibromyalgia to my list of diagnosed illnesses. I've got some information to look over, and a few weeks supply of amitriptyline to try out. Although its chronic, I'm relieved that its not something more damaging and it shouldn't make me loose my university place.


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## theOcean

Oh no, I have a bit of experience with that since my grandmother has fibromyalgia, too. I'm glad you were able to finally get a diagnosis for it so it could be treated, though. Apparently amitriptyline can be good for your IBD, too, from what I've heard.


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## valleysangel92

Really? I've not heard that so will be interesting to find out if it's true  . I started having joint pain at 12 so it's good to finally have an answer.


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## theOcean

Yep! There's even a support group for it here on our forum. I also hear it helps with migraines, which I'm a bit envious of. 

And that's awesome you finally have an answer after so long. :hug:


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## valleysangel92

Yeah I know it helps headaches,  which is good for me since I get week long headaches pretty regularly... Thankyou


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## ron50

I was sent to the podiatrist for a diabetes foot check and to see why I am walking on the outside of my right heel . I took along an mri showing the spondylitis damage to my lower spine. The podiatrist told me straight out that there was nothing she could do . My feet are ok at the moment but no amount of work on my shoes was going to help the way I walk. I asked her opinion on orthopedic intervention on my spine. She said there is no way a surgeon will touch you in your current condition ,ie nephrotic syndrome and taking cyclosporine. I saw my nephrologist last week. The reduction in the protein loss  has stopped at around two grams  so I have not achieved remission, he looked at my mri and told me to more or less forget it. After the two lower vertebrae collapsed they fused and it would be a massive clean up. He appreciates a little more the pain levels that I suffer. Up till now all I have had for relief has been panadol osteo. He insisted I start on fentenyl patches . They do not effect me like norspan patches did and I am getting a little pain relief. Another day another medication. I am so sick and tired of taking stuff. I am getting to the point where they are having trouble getting blood samples. The tech suggested some of my veins are becoming so scarred the needles are pushing them out of the way. It would not surprise me...Ron.


----------



## lizbeth

3 weeks ago I added a second shoulder impingement to my list, this time my right shoulder which is seeming more bothersome as I'm right handed so everything I do results in pain .  I'm having a scan tonight and then we'll be booked for surgery again which scares the pants off me cos I remember all too well the days after surgery, but hey hoe it has to be done and I had amazing results from the first one.

I'm also having a scan of my knees next week to rule out surgery and then at last getting referred onto rheumatology, yay! At last someone is considering a single condition for my issues. So the fun continues.......


----------



## Jboy--

valleysangel92 said:


> So today, I added Fibromyalgia to my list of diagnosed illnesses. I've got some information to look over, and a few weeks supply of amitriptyline to try out. Although its chronic, I'm relieved that its not something more damaging and it shouldn't make me loose my university place.


My Aunt I used to live with and one of my closest friends have Fibromyalgia, if you ever have any questions feel free to ask me


----------



## nogutsnoglory

I wish we had doctors who treated us holistically. I have a bunch of weird ailments from minor to major and doctors don't care because they only deal in their area which fir the majority of my care are IBD specialists. 

It would be nice to connect the dots or figure an overall treatment plan but alas that's not how modern medicine works.


----------



## Jboy--

nogutsnoglory said:


> I wish we had doctors who treated us holistically. I have a bunch of weird ailments from minor to major and doctors don't care because they only deal in their area which fir the majority of my care are IBD specialists.
> 
> It would be nice to connect the dots or figure an overall treatment plan but alas that's not how modern medicine works.


Haha amen to that, sometimes I just wish I could get every medical test there is done :tongue:


----------



## ron50

Have just finished day 15 of the fentanyl patches. Yes I have had some pain relief but I have also been on a rollercoaster of emotions including some of the worst dreams I have ever had. The problem with the patches is they don't seem to stick very well. You can't shave the area you apply it to. You can't even wash it with spirits or even soap and water ,just fresh water. The delivery of the drug seems to vary far too much. I think on some of the patches I was getting the full hit on day one and nothing much for the next two. I hate having dreams that make you feel utterly without  hope and when you wake up the feeling remains and you have no idea why. At least I can understand pain. No more fentanyl Ron.


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## Scifimom

Interesting group. I don't think there is a single person with Crohns or any other autoimmune who doesn't deal with "something else" along with his/her major illness. I was diagnosed with Asthma when I was 13-14, probably had it all my life, some kids with asthma get over it after puberty, I didn't (lucky me). Everyone in my family has some sort of lung problem which probably means that I inherited the weak lungs. I am only on one anti-inflammatory for asthma control and some aerolin inhaler when needed.

I have Crohns, diagnosed at 35 with no previous symptoms (yay-NOT). I am the first one in both sides of my family up to three-four generations back (we have some medical archives and stories). I am on Humira for crohns which is working to keep me in remission but I am not crohns free, that makes me the unlucky patient who doesn't "look sick" but who has 7-12 bms a day on a good day, yay again.

I am partially deaf by my right ear due to chronic sinus problems from allergies, I am allergic to pollen (especially pine trees pollen and olive flowers pollen) and to those cotton looking seeds that some trees leave during spring. Some chemicals and some foods also cause me allergic reactions. I am not highly allergic to anything though, I just sneeze and suffer during spring or during Christmas (I am allergic to the fake snow we use on Christmas trees). For the severity of my Crohns I take very few drugs, and my asthma has been under full control for more than 9 years with no attacks at all. I consider myself lucky.


----------



## theOcean

Are you sure you're in remission if you're getting that many BMs a day?


----------



## theOcean

Also, does anyone here have Restless Legs Syndrome? I've had it for awhile and it's in my family but I recently got a sleep study done. Apparently it wakes me up on average 22 times an hour. I tried taking pramipexole (mirapex) for it, but instead of helping me it's causing insomnia and is actually making my RLS so much worse. I'm so frustrated and upset.


----------



## Daisy123

theOcean said:


> Yep! There's even a support group for it here on our forum. I also hear it helps with migraines, which I'm a bit envious of.
> 
> And that's awesome you finally have an answer after so long. :hug:


I am on amitryptline for post neuralgic pain after a second bout of shingles. I also get a good night's sleep after years of insomnia. I did read about it for migraines which I only get when the crohns flares and/or have strictures. I can always feel the migraines coming, I can smell something which is sickly sweet and the left hand side of my head begins to pound. When this happens I immediately take 50mg amitryptline and it seems to ward it off.


----------



## Scifimom

theOcean said:


> Are you sure you're in remission if you're getting that many BMs a day?


My doc says is normal and I have to learn to live with that.


----------



## Pray777

Hello,
I have depression, migraines, epilepsy, sciatica, spinal arthritis and newly diagnosed with recurrent ischemic colitis with ulcers.  Trying to get a good plan of treatment.
I'm a normal size 2 wearing size 12 pants.  I am in pain (not like when I went into the hospital but it's still there) and am hoping to come in contact with others who have this and can help me deal with it.  I'm a 43 year old female and most information says that it's a disease mostly in 60 plus year olds...


----------



## DougUte

Scifimom said:


> My doc says is normal and I have to learn to live with that.


My wife was once told by a neurologist that 2-3 migraines a week was "just normal for some people."  Not much later she found a new neurologist. 

That many BM's is not normal and you should not have to just "live with that". I am in remission and I have 1 to 2 BM's, which are normal looking, per day. 

Scifimom, is there another GI doctor you could see for another opinion?


----------



## LodgeLady

Pray777 said:


> Hello,
> I have depression, migraines, epilepsy, sciatica, spinal arthritis and newly diagnosed with recurrent ischemic colitis with ulcers.  Trying to get a good plan of treatment.
> I'm a normal size 2 wearing size 12 pants.  I am in pain (not like when I went into the hospital but it's still there) and am hoping to come in contact with others who have this and can help me deal with it.  I'm a 43 year old female and most information says that it's a disease mostly in 60 plus year olds...


I love your avatar!!!

I'm praying you get the answers and treatment you need for all those ailments!:ghug:


----------



## Scifimom

DougUte said:


> My wife was once told by a neurologist that 2-3 migraines a week was "just normal for some people."  Not much later she found a new neurologist.
> 
> That many BM's is not normal and you should not have to just "live with that". I am in remission and I have 1 to 2 BM's, which are normal looking, per day.
> 
> Scifimom, is there another GI doctor you could see for another opinion?


As a matter of fact no... I live in Greece in the vice capital which is Thessaloniki, we only have one IBD specialized public hospital (For the whole northern Greece) and my GI is the head of the department I was REALLY lucky to get accepted, they only take a couple new cases per year and only very severe cases (Which mine is, my dx is "severe both inflammatory and ulcerative crohns disease"). Going private is not an option as in Greece Humira can be prescribed by hospital doctors (We have universal healthcare). This is an advantage since I don't need private insurance and all my tests and medication are totally free, some problems though exist, one of them is that when I have the "best" GI in town I cannot change to someone else.


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## Chrissie52

I just saw this and realised just how much other people are going through. I have had Crohns for 30 years with 1 major resection and 1 repair and a bunch of other stuff including peripheral neuropathy, hiatus hernia, gluten and lactose intolerance (in recent years) anal fissures and fistula, but have been very lucky really. I have been able to have a successful career (now retired) have been able to support my husband who has MS and had to retire at 35 due to walking issues, I have supported 2 kids through university (1 also has MS) and weddings, and now help my daughter with her 3 autistic children. Are all these illnesses related - probably, but there is no definitive answer yet. I get frustrated when something else is added, but know that this body is what I have so I need to get on with it! I feel for those of you who have such pain and anxiety, my thoughts are with you all. I am glad for the opportunity this forum brings to allow us to vent, share and learn from others, thanks.


----------



## barbie_ferrari

Hello everyone reading this.. I too suffer from a few different medical issues, including Crohn's. My biggest challenge is actually the mental illness I've developed as a result of having chronic illnesses. Does anyone else have emotional issues as a result of their illnesses? I'd really love to start a thread in my new support group "IBD and Mental Health Support Group". 

I look forward to hearing from some people.


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## Jennifer

Yes barbie_ferrari members often mention dealing with depression and anxiety after their diagnosis of IBD.


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## Ann Morgan

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.


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## Stardust_Fiddle

Scifimom said:


> My doc says is normal and I have to learn to live with that.


I am the same way. I'm clinically in remission but still have all the Crohn's symptoms and pain I had all along. Joy. :ybatty:


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## Ann Morgan

Barbie: I think your idea is a great one !  I suffer from many illnesses ( see long list in my last post ) and I suffer from Major Depressive Disorder and Anxiety. I don't think my depression is directly linked to all of my illnesses, but I think the illnesses make the depression way worse. 

*Lynda
Anal Fistulectomy 1992
Gallbladder removed 1995
Diarrhea started in 1997
Misdiagnosed in the late 1990's
Started on Questran Powder in late 1990's or early 2000's
Rectal Abscess surgery in 2002
Properly diagnosed in 2006 with Ulcerative Colitis
First I was on Asacol
Now I am on Lialda and the Questran Powder
Rectal Abscess surgery in 2009
Recently started having constipation and seeing a new Gastroenterologist
I am 54 years old
I am new to this website and I finding out so much new information about my disease*
*Also taking D3 vitamin and B12 vitamin*


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## lizbeth

I actually got some good news for a change,,I don't need surgery on my knees!! Yay. Being referred to rheumatology at last,, there is a strong chance I have sero-negative arthritis, for years I've being saying I thought my joint pains (hands,, hips,, SI joint, knees and now feet) were related so to finally have someone agree feels amazing.


My other good news is that I have diabetic retinopathy and have had laser to try and halt the leakage. A cyst had formed that I was told would sadly be permanent but amazingly at my last appointment it has gone, my Dr was even surprised.

Ann Morgan....I also have shoulder problems and an on a waiting list to have my right shoulder operated on,,I have impingement syndrome which means extra bone has developed in the joint which cuts into the tendon. I had the same surgery 3 years ago on my left shoulder and it was a great success.


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## aideen33

Nice to find this. 

Im diagnosed with migraine headaches (of some indeterminate cause), hypoglycemia (sometimes called hyperinsulinism), the Crohn's of course, and Moderately severe asthma.. oh and the random unexplained pyloric stenosis

Taking Asacol HD, Prednisone, Hyoscamine, Nexium, (about to start Entocort soon as insurance figures their crap out), Symbicort, and Ventolin.


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## Ann Morgan

lizbeth: I went to an Orthopedic shoulder doctor the other day. My left shoulder was hurting like hell. He gave me an injection in each shoulder. This helped me tremendously. He is going to send me to Physical Therapy for my shoulders. I have had PT before and had "ok" results. I really would like something for the pain, but the doctor and I both agreed that narcotics are not a long term solution to my shoulder problems. This doctor was new to me but he was very nice and I liked him. If I don't feel comfortable with a doctor then I don't have much confidence in any treatment I may get from him/her. 
I just get pissed off a lot of the time because I have limited mobility, I get embarrassed at the grocery store because every time I go there I have to ask for assistance from the employees or from other customers to reach items that are above my reach. Why do most of the items I want to buy HAVE to be on the top shelf:lol:


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## lizbeth

Ann I had the same trouble, I hate going shopping on my own now. Good luck with the pt .


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## Ann Morgan

I have had two PT sessions on my neck.  Well, I don't know if I can say this here, but my PT guy is a nice looking, young guy who gives me neck massages while I am there. That alone makes me feel better ( LOL ). I have started to think that I may want to find a reputable massage therapist and get some regular massages to make me feel better. I will ask my PT guy if he can recommend anyone. I used to get massages occasionally and they felt great ( my muscles are so tight ). I will start PT on my shoulders next month, completely different from the sessions I am getting on my neck at this time. The cost is not cheap, but I need the help. Part of me really wanted some pain pills for my arthritis and joint disease, but after chatting with my Orthopedic Doctor we decided not to go that route. I have been on hydrocodone before and I really liked it. Of course it is a narcotic and it is addictive. I used to call them my "happy pills".


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## Ann Morgan

aideen: I had migraine headaches back in 2006 and 2007. I was in the ER one time for a really terrible migraine headache. The waiting room was packed. It took me 6 hours to be seen by a doctor. I sat in a wheelchair in the large waiting room lobby for 6 hours in terrible pain. Once I did get to see an ER doctor they did a CT Scan ( I think ) and then they gave me a cocktail of medications in a shot or an IV ( I cannot exactly remember ). Once I got the cocktail of medications I felt great.  I no longer get the migraines. I believe they were caused by anxiety and psychological issues. In 2006 I was suffering from depression and anxiety and I did not even know it. By 2007 I ended up in the psyche ward, but it was the best place for me at the time. I did not have any more migraines after being diagnosed and receiving psychiatric medications. I DID go back to work after a five month short term disability, but two years later I got let go due to "workforce reduction" .  Do doctors even KNOW what causes migraines ?  I used to have terrible pain in my left temple area. I heard on TV that they use Botox for migraines ?


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## ron50

Hi Ann,
       I am on a new opiate pill called targin . It is a combination of oxycodone and naloxone which is an opiate antagonist. My nephrologist told me that it is nigh on impossible to get high on targin because of the naloxone. I am on 20mg/10mg twice a day. I am due for a rise probably to 25  in the next week of so. I suspect that the naloxone ,intended to prevent opiate induced constipation , is actually acting like low dose naltrexone which is almost exactly the same drug. The oxy handles the spondylitis and psoriatic arthritis pain and the naloxone has completely removed the burn from my neuropathy. Unfortunately is has absolutely no control over the constipation and acting on the docs orders I take 2 dulcolax tabs each time I take Targin, My nephrologist ,gp and rheumy all think it is a wonder drug, Cheers Ron.


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## lizbeth

Ron I'm also on the same drug which does help with my pain but doesn't get rid of it, though I'm very thankful for the relief it gives.


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## ron50

What dose are you on Liz?
  My gp is aiming to get me thru the twelve hours without breakthrough pain. It worked for a short time but he is pretty sure I will need to double my current dose of 20/10 twice a day before I achieve that goal. Before I went on this drug I was terrified of opiate pain killers . I can honestly say that apart from pain relief I have not noticed any strange or nasty side effects(  Well not after I got the constipation sorted).. Ron.


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## Ice

Hi everyone and please excuse the length of this post,

I'm about to be sent on another round of 'let's figure out what this is' and running another gamut of doctors, tests, and more tests, and because of past experiences, I am both skeptical and just really really frustrated and tired of both the experiences and of the amount of money this is going to cost me (again).

The reason I am posting here is because in addition to what has become a chronic series of GI issues which is making my doctor want to screen for possible IBD issues as opposed to just IBS (or my blood disorder acting up badly), I also manage a lifelong genetic blood disorder which has its own set of symptoms, problems, and also exam and labs-related abnormalities.

*That said, I was wondering if anyone who has another pre-existing condition besides IBD which can possibly alter the results of blood tests and/or other lab exams that are used to help diagnose or interpret GI-related symptoms can share their experience with doctor(s) interpreting lab results and the like and 'fighting' over how to interpret the results.*

What I mean is: How do the doctors (or you) know that the results are from Problem 1 as opposed to Problem 2 and what is their approach to differentiating?

The blood disorder I mentioned previously shows up in certain blood tests and general exams and labs. Unfortunately, some of the values that this condition can alter are also values used in determining GI-related health. Some symtoms can overlap, too.

I've struggled with severe GI issues for 7 years now and though I have had some 'unusual' test results that were considered 'more unusual than what my normal would be', my doctors have almost always attributed the results to a flare-up of my blood disorder as opposed to anything GI-related.  Mostly because they KNOW I absolutely HAVE the blood disorder as opposed to 'We don't know what kind of a GI issue this is, so it's more likely the former as opposed to the latter and you're also getting older so maybe the pre-existing condition is getting worse.'

The whole bit about me getting older and my blood condition getting worse resulted in me seeing a very special blood specialist who specialized in my particular disorder... only to have them disagree with my doctors.  My condition was/is likely more stable than what the exams/labs/whatevers were showing so it's probably something else!

According to the blood specialist, GI pains (and pain in general) COULD be a problem with my condition worsening with age, BUT it would be more of generalized pain and not the episodic weeklong-ish bouts of D, extreme pain, 'feeling blocked', extreme bloating at times, mouth ulcers, occasional C, and extreme fatigue.  In his opinion, the unusual blood test results possibly warranted another look from another angle. 

This was communicated to my other doctors... who pretty much all disagreed at the time because previous x-rays, CT, ultrasound, and upper endoscopy (but no colonoscopy) done in years past ended up being fairly unremarkable... and so it's been like a game of ping pong and at some point, I just quit getting labs done, seeing the doctors, and just shut up and dealt with the GI issues as well as I could with the blood issue already being more than a handful to deal with.

After all these years, though, with my GI issues only getting worse and worse and my lab values in some departments getting more and more skewed, my primary doctor is actually rethinking the interpretations of my past lab tests and is wanting me to undergo another series of exams and such to look for other non-blood issues.

This means more specialists, more exams, more labs, more diagnostics... and more money.

Thing is, I STILL might/probably will! get values that could be interpreted as 'blood disorder flare' as opposed to 'anything else disorder' and so I'm skeptical.  What good will exams do if anything that comes of it is going to be read as, "Your pre-existing condition is getting worse and it's making your GI issues worse so go see a blood specialist (who's going to turn around and point back in the other direction)?"

Can anyone relate to this?  How was it/did you dealt/deal with/with it?


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## UnXmas

Hi Ice, I'm not sure how comparable my situation is - I have another, extremely rare medical condition which is classed as rheumatological, which affects every part of my body including my digestive tract, where it causes major motility problems. It has proven extremely difficult to work out which symptoms are caused by which condition. Lab tests haven't been quite so confusing, however.

I think it's worth remembering though, that even when someone's known to have only one disease, deciding whether or not to undergo extensive testing can be more difficult that it first seems. Questions still come up surrounding, how useful with the information be? Is it going to affect the course of treatment? I don't think there's an easy answer.

But I guess one key question you could ask yourself is whether you would feel more at peace if you knew IBD had been thoroughly ruled out? _If_ it turns out the reason things are getting worse is to be put down to your blood disorder, would you feel better knowing that information? Would it give your blood specialist a clearer idea of what's going on and convince him to work harder to come up with ways of treating it? I guess the main test you'd be looking at next would be a colonoscopy?

Also, is your blood condition very rare? Are there online communities for it where you could sound out your GI symptoms to other sufferers and see how out of the ordinary your current symptoms are? 

I would also ask whether you have a intuitive sense about this at all, though I know for myself my intuition hasn't always been that great, but there have been times when I've simply known something about my illness - one specific example being when some doctors were questioning whether new symptoms were to be considered the result of my existing condition or something new. I just knew for certain that they were from my existing condition. People do get multiple illnesses, new complications do crop up, but there also comes a point where you can recognise it would be very unlikely that yet another new thing has come along when you already have an illness that could potentially be responsible for it. If your existing condition is known to cause GI problems, it may not make sense to start looking for another cause when you've got one possible cause right there already. That was my experience anyway. 

Sorry, I've reread my post and realised I'm probably just confusing you even more! And as I said, my experience has been mostly about trying to decipher what is causing which symptoms rather than what is causing test abnormalities.

One final thought: how good are your doctors at communicating? Can you get copies, not just of your test results, but written statements of each doctor's interpretation of the results, and why they think you do/do not have additional GI issues, so that you can show them to the others?

And just to add - one of my doctors gives me his honest opinion when he thinks my other doctors are wrong - he's very unprofessional in that way.  Sometimes "fighting" can help to bring out more potentially good ideas. And I guess you at least know that more options are being considered than would be if you just had one doctor set on one particular view. I also find I tend to know which doctor's "side" I'm on - does one of your doctors come across to you as the one who's most knowledgeable about your condition, or who has helped you most in the past?


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## mish2575

Can I join this group, even if most of my diseases are Extra-intestinal manifestations of Crohns?

I have: 
Crohns
Episcleritis
Psoriasis
Hidradenitis
Bursa or Arthritis (not diagnosed yet)
Adenomyosis


I have been prescribed long term antibiotics for the Hidradenitis but they killed my gut.  I'm currently taking a break from them until my next Derm appointment in 3 weeks.  they will try another kind.  I have an appointment with my GI two days afterwards so I will discuss it with her.


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## ron50

I have a very practical nephrologist. He has done three kidney biopsies on me . They are very unpleasant. He has no worthwhile results from them. They show I have a problem but it does not relate to any known kidney disease. He has stated clearly that there will be no more biopsies. I have therefore been diagnosed with an auto immune kidney disease of unknown type and cause. He treats the symptoms as they arise. So I guess in the end I will die of Ï don't know" I can handle that. Ron.


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## lizbeth

ron50 said:


> What dose are you on Liz?
> My gp is aiming to get me thru the twelve hours without breakthrough pain. It worked for a short time but he is pretty sure I will need to double my current dose of 20/10 twice a day before I achieve that goal. Before I went on this drug I was terrified of opiate pain killers . I can honestly say that apart from pain relief I have not noticed any strange or nasty side effects(  Well not after I got the constipation sorted).. Ron.


Ron I'm on targinact 20/10 but also take oxycodone 10 twice a day at the same time and have oxynorm for breakthrough pain. I was on 40/20 but thought it made me worse, turned out I had a virus so I'm going to go back to the 40/20 dose. My Dr is also trying to reduce my pain as much as possible.


----------



## Keralin

I have a few little problems that just sort of popped up.  My GI doctor doesn't believe a word I tell him about the stuff outside of his specialty unless I make lab results and doctor's notes appear in front of his face, because "people don't have so many issues going on - there has to be a unifying diagnosis".

Diagnoses to Date
-Crohn's Disease: diagnosed, undiagnosed, then rediagnosed all within a year, currently on no medications for Crohn's because my old GI doc left me high and dry while I was in the process of relocating, and apparently I'm in the middle of a flare.  Thanks, dude.  Way to look out for your favorite customer.  The ER doc told me to stick to liquids until I get in to see my new primary doctor on Thursday, then we'll discuss what needs to be done until I can be seen at the GI clinic.  Stricture + inflammation = partial obstruction.

-Chronic Kidney Disease Stage 4: idiopathic, not otherwise specified, suspected to be auto-immune.  I was stage 3 after diagnosis for 6 months, and have already progressed to stage 4.  Progression was expected to be slow, staying at my previous level of function for YEARS, not months.  More intensive testing needs to be done with my new nephrologist as soon as possible.  CKD will make finding appropriate medication for Crohn's a whole lot more complicated.

-Hypoglycemia: Happens when I don't eat for more than a couple of hours, but is more severe after eating 'crohn's safe' meals.  The endo blames this on malabsorption causing hyperinsulinemia aka he blames Crohn's. 

-Bradycardia & Hypotension: No structural heart disease, slightly leaky valves, idiopathic (just like everything else).  Given a trial of florinef, but didn't react favorably.  I find eating frequently helps, so it's possible that it's tied in with my endocrine problems, which could be a side effect of Crohn's.  :eek2: 

-Adjustment Disorder with Depressed Mood & Anxiety; Chronic: That's just a fancy term for 'I move a lot and I have a difficult time adjusting'.  It's normal for everyone, so I think the actual dx is silly, but hey, they have to put something down on that piece of paper when you go to see a counselor.  Took a low dose of cymbalta to keep myself from murdering my in-laws during the move in July.  It worked great!

And last, but not least, I was diagnosed as married in 2006.  He is my favorite disease, yet is sometimes the biggest pain in my ass :lol:

I hate to say misery loves company because it's so cliché, but it's true.  It's nice to not feel like a freak of nature.  Sad that we all are going through what we are, but grateful to be in contact with so many amazing people who keep on trucking, in spite of their many challenges. :ghug:


----------



## UnXmas

Keralin said:


> I
> 
> And last, but not least, I was diagnosed as married in 2006.  He is my favorite disease, yet is sometimes the biggest pain in my ass :lol:


:lol:


----------



## Ice

UnXmas said:


> Hi Ice, I'm not sure how comparable my situation is - I have another, extremely rare medical condition which is classed as rheumatological, which affects every part of my body including my digestive tract, where it causes major motility problems. It has proven extremely difficult to work out which symptoms are caused by which condition. Lab tests haven't been quite so confusing, however...


Hi UnXmas 

Just wanted to say that I ended up addressing this post and another one you wrote for me in my thread because I felt the conversation was perhaps getting better geared for there. 

http://www.crohnsforum.com/showpost.php?p=810207&postcount=13


----------



## ron50

Thanks Liz, 
      I went from 20/10 to thirty fifteen today. He also gave me some standard oxy tablets to use when I get breakthrough pain. I am to take notes on how much  straight oxy I take and when and what for so that he can try and formulate a medication plan for me. He does not want me to get to the point where the naloxone component dose is getting too high. He would rather it not go over the fifteen I am now on and to bolster it with a timed release straight oxy pill to get me thru the twelve hours. I take it at 6.15 in the morning and 18.15 in the afternoon. I am a bit concerned that the naloxone is not keeping the constipation in check. In the last month or so on two occasions the motility of my colon has completely shut down and has made me extremely unwell. I have a lot of adhesions from the colon cancer surgery and I really have trouble starting things moving. I am now taking two biscodyl  with the targin dose as well as a couple of sachets of movicol each evening. I have gone right off food as I get scared to eat a normal meal in case of blockages. I have lost close to 22 lbs since I started targin. I take my blood sugars every morning and I have not gone above 5.8 in the past fortnight . Mostly sitting around 5.5.  Targin has really helped me with the pain from the spondylitis and to a lesser degree the psoriatic arthritis. The relief from the neuropathy is at least letting me get some sleep. I really don't want to go back to the pain again as I know it will come back with a massive flare. I hope We can both find a management plan that will let us get some well earned relief....Hugs ron.


----------



## Ann Morgan

RON: Are kidney issues part of these diseases we are talking about here ? I was just wondering because I have Ulcerative Colitis and in 2007 I had a Partial Nephrectomy on my left kidney ( a little 1.5cm thing). It was removed during major surgery at the hospital and was found to be benign. I have recently found out ( during a routine ultra sound and then later followed by a CT Scan) that I have a 1cm "thing" on my RIGHT kidney now. My Urologist and I are keeping an eye on it with regular CT Scans right now. I told him about my previous surgery on my left kidney and how the doctors made it sound like it was SO urgent to get the "cyst" removed. I told him I don't want kidney surgery THIS time unless it is very, very necessary. I will have another CT Scan on my kidneys in October/November 2014.


----------



## ron50

Unfortunately Ann that is a yes. I have had three biopsies that tell my neph nothing . I went thru a rough patch with kidney stones some years back. They were only little uric acid stones but they are SHARP and they take the smile off my face when passing. And the blood in my urine usually leads to a myriad of tests for bladder cancer etc. etc. My main kidney problem is protein loss thru my urine. In jan I was losing over 7 grams a day. 150 mg a day is the high end of normal. Because of the protein loss there is nothing to keep the blood in my veins and I suffer badly from peripheral and pulmonary Oedema. I have lung problems ,they are not sure if it is asthma which I have been diagnosed with or bamboo spine from ankylosing spondylitis which I also have. We are pretty sure my auto immune problems are hereditary combined with medication side effects (mainly chemo for colon cancer). Whatever it is I only have 70% lung capacity and I suffer panic attacks when I wake at night unable to breathe. They have done a lot of ultrasounds on my kidneys and they never seem to worry about the small cysts. My neph said that most people have them and it is only when they grow that he worries. I can understand your reluctance to have surgery. After my first biopsy I vowed and declared I would never turn my back on another kidney specialist as long as I live. Stay well mate . all the best Ron.


----------



## Ann Morgan

Ron: Thanks for your reply. I am so sorry that you have had to endure so much pain and suffering. 

I think my sister has auto immune problems. She has RA and I think she takes methotrexate for it. She also has Sjogren's Syndrome. She has dry mouth. I think she now has scoliosis. And she has some form of lupus. I know there are more things that she has not told me or that I don't know about. 

She is one of those people that does not talk about what is wrong with them. I am just the opposite, I whine and complain about every ache and pain and discomfort that I have. 

But there is a guy that works at a grocery store here that I frequent and he is very handicapped and he works at the store doing many different things. He is not old, but he has a cane. His legs are all messed up and it looks like one of his legs is really bent in the wrong direction at his knee area. So when I start feeling sorry for myself, then I think of him because he is a great guy and he is working at a job regardless of his disabilities. He is always happy. 

Stay strong and don't give up.


----------



## ron50

We do get by Ann . And it is sites like this that give us that leg up when we need it. Pain and suffering is relative , the person who has just one auto-immune problem is suffering just as badly as one who has twenty. And we are in the position to be kind and supportive to both. Support groups are quite incredible, we are the ultimate placebo. Without doing a single physical thing we can raise someones spirits and give them the incentive to just keep on going. Why because there are several other people out there in cyberland who are doing it just as tough as us and just knowing that helps. I don't believe you whine and complain you probably just tell it as it is. the difference is that here you are telling it to someone who understands. All the best ,Hugs Ron.


----------



## lizbeth

ron50 said:


> We do get by Ann . And it is sites like this that give us that leg up when we need it. Pain and suffering is relative , the person who has just one auto-immune problem is suffering just as badly as one who has twenty. And we are in the position to be kind and supportive to both. Support groups are quite incredible, we are the ultimate placebo. Without doing a single physical thing we can raise someones spirits and give them the incentive to just keep on going. Why because there are several other people out there in cyberland who are doing it just as tough as us and just knowing that helps. I don't believe you whine and complain you probably just tell it as it is. the difference is that here you are telling it to someone who understands. All the best ,Hugs Ron.


I couldn't agree more, I would be lost without the support and kindness here.

The naxalone component of targinact isn't enough for me either and I use lactulose everyday too, if I don't I get terrible pain from firmer stools.  I'm having a bit more luck in controlling my blood sugars thankfully but it's hard work. I don't have a good appetite cos the thought of food makes me want to barf and after making a meal I just can't stand the smell. Though for some reason I've put on over a stone in the last few weeks, going to see the Dr about it this week.

Keralin I was diagnosed with same matrimonial condition as you 25 years ago and couldn't agree more, while it can be a right royal pain is one condition I'm happy to have  lol.


----------



## Amanda89

Hi All, I've been using this forum for a while, but really glad I found this support group.  I am a sufferer of:
Crohns Disease
Psoriasis - Plaque and palmoplantar pustulosis
Psoriatic arthritis - hands, feet and knees
Acid reflux

I'm still working full time, but juggling appointments with all specialists including gynecology every 6 months for colposcopy's due to HPV virus in a few cells and up till 8 weeks ago, was going for Infliximab treatment every 8 weeks.

My question for everyone is, when discussing treatment for your different conditions, do your consultants liase properly with each other?  Do you feel like you have a say in what treatment you would like to consider?


----------



## ron50

My gp and nephrologist work togeather all the time, my rheumatologist does not care , He once did an mri on me that showed grade two ankylosing spondylitis. Not my field he said see a back specialist my neurologist was ,is no better. Ron.PS every AS group I have been on have said that AS needs to be treated by a rheumatologist just not mine!


----------



## UnXmas

Amanda89 said:


> My question for everyone is, when discussing treatment for your different conditions, do your consultants liase properly with each other?  Do you feel like you have a say in what treatment you would like to consider?


I've recently acquired a gastroenterologist who I really don't like, and am trying to get rid of, and my surgeon was so mad that she didn't consult with him, when he's known me so long. He has done all my planned surgeries, but recently I needed an emergency surgery, and so had a different surgeon. My regular surgeon, when he heard I was in the hospital, came to see me on the ward and after hearing the details of my surgery, left a message for the emergency surgeon, giving her all the details of my medical history that he thought could be helpful. He also has a friend who is a urologist, and they do joint consultations together. He's so good at communicating! My GP also acts as a coordinator.

My surgeon has always given me a say in treatment for my elective surgeries - he wouldn't have given me a stoma, etc. if I'd said I didn't want one. My emergency surgery, well I didn't get much choice. First the surgeon asked me if I wanted surgery or not - my bowel was blocked and had perforated, but because I have another medical condition that made the surgery very risky, she was worrying about whether it was better to operate or to try and treat the perforation with antibiotics. My other medical condition is very rare and had been dealt with only by specialists in London. I was pretty incoherent at the time, and it was the middle of the night, so there was no way of contacting London, and she had never met me before. She actually ended up speaking to my parents to get details from them. She told me that once she'd operated, I would be in for a long and difficult recovery, and I needed to know what I was going to be in for. I was just starting to feel like I couldn't face going through another surgery, and saying to her I'd rather treat it with antibiotics, when something changed her mind and she rushed me into theatre. Which actually turned out to be the right call.

So I've had both sides - some communicate, some refuse to. My gastroenterologist seems to just want to go her own way all the time, and ignore everyone else, including me!


----------



## lizbeth

Just add fibromyalgia and a cyst in my armpit that needs removed to my list, guess it's safe to say I'm not too happy .


----------



## Ann Morgan

Okay, I have been on doctor overload for most of this year......and I still have one more

doctor to see but I will have to wait until next year. I have not seen my Gynecologist this

year yet.  After many, many years of good office visits with my Gynecologist, in

2013 he found something wrong and I had to have a procedure called a 

Hysteroscopy. I am 54 years old and that was the only visit where he found

something wrong with me ( go figure .... I have so many other things

wrong with me, so why not add one more ? ).  So, I really need to follow up

on that. I will need my mammogram too. Unfortunately, because I have new health

insurance, I cannot return to the Gynecologist that I was seeing ( and he was a guy I

really trusted ).  Finding a new doctor that is professional and knowledgeable is

sometimes difficult.  Because of my new health insurance plan this year I had to give

up a great Gastroenterologist and a great Gynecologist this year. I went to a new 

Gastroenterologist this year and I am not sure if I am going to keep him or not. I have a 

follow up visit with him in November, I will see how that visit goes before I make

my decision.  I started collecting Disability benefits in January of 2013.

I do not work any longer. 

I cannot imagine having to go to all of my many,

many doctors for my many, many health issues and then still have to go to work 40 

hours a week. I am sure that most of you guys work full time ?  How do you do it !

I am going to my Primary Care Physician this Monday to talk to him about my fatigue !

I want him to do a blood draw to check my iron, thyroid, B12 and Glucose. I know that

I have multiple health issues, but I am getting more tired by the minute. There must

be an answer to this fatigue question. Thanks for listening. Hope you all have a 

great weekend.


----------



## ron50

I am having another sleep study on Monday night. I had one several years ago the results were that I don't stop breathing , I just stop absorbing oxygen, No suggestions were made at that stage for further investigation. Now I wake in panic at night. I can breathe ok I just don't get any results for my effort. It will be interesting to hear what they say. I was dxed with my third arthritis type this week . I have grade two ankylosing spondylitis , psoriatic arthritis and now osteo arthritis. I am developing nodules on the joints of my hands rather quickly. I am pretty tired of it all. I wold not mind if the world stopped and I could get off for a little while... Ron.


----------



## lizbeth

Ron if you find a way of stopping the ride for a bit would you let me know? I would love a break from this all. I've recently had acupuncture which to my amazement helped ease my symptoms but the effects have worn off and I found myself thinking that I didn't want that to happen again, I didn't want the pain to ease bc when it came back it was harder to deal with, for a little while I felt good but now that it's back again I'm so sad that I can't function again, it's hard to explain but I'd nearly rather just be sore than to get better for a while and then lose it again.


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## ron50

I know exactly what you mean Liz. I was lucky enough to have Friday off so I put the boast in and went fishing. It was a very hot day and by one thirty I was totally had it. It is Sunday afternoon now and I am still wondering if it was worth it. To add to my problems I was watching tv on Friday night and the tv remote fell on the floor. I stretched over the arm of the chair to get it and something popped in my left rib cage. I don't know if it was rib cartilage or weather my rib has been weakened by steroid caused osteoperosis and it has cracked but for a while I was in really serious pain . It is still not good. I don't want to see the doctor , I see him enough. My pain killers are not doing the job very well at the moment. I think we are upping the dose next appointment. I must admit I am struggling at the moment . At work last week on at least two days I had a series of funny turns where I start sweating profusely and feel really off. Monday I think it happened about ten times. I keep wondering if and when I am going to have a really serious medical incident. Our bodies just cannot take all of this stress without something happening. Hugs ron.


----------



## lizbeth

When is your next appointment Ron cos it sounds like you should get the sweating and weird feeling checked putt sooner rather than later? I know what you mean about not wanting to go but it could be important given what else is going on in your body. Whatever you decide take care of yourself cos there's only one of you. Big hug right back at ya . X


----------



## Ann Morgan

ron50 said:


> I am having another sleep study on Monday night. I had one several years ago the results were that I don't stop breathing , I just stop absorbing oxygen, No suggestions were made at that stage for further investigation. Now I wake in panic at night. I can breathe ok I just don't get any results for my effort. It will be interesting to hear what they say. I was dxed with my third arthritis type this week . I have grade two ankylosing spondylitis , psoriatic arthritis and now osteo arthritis. I am developing nodules on the joints of my hands rather quickly. I am pretty tired of it all. I wold not mind if the world stopped and I could get off for a little while... Ron.


Hi. I have had two doctors recently suggest that I do a sleep study. I am going to check with my Primary Care Doctor and my Health Insurance Company next year. I am going to too many other doctors this year already. I have had problems with my sleep for several years. During the past month it has gotten worse. I wake up in the early morning hours with what appears to be hip pain ( I have hip arthritis ). And NOW my back is starting to hurt ! The other day I was so tire that I had to sleep for three hours during the middle of the day. This happened a few weeks ago too. I have been tired for years, but starting in May the tired turned into exhaustion, and now the exhaustion has turned into full blown fatigue. It affects every part of my life. Keep in touch and tell me how the study went. PS: I am having doctor overload this year ! I wanted to take a "doctor break" at the beginning of next year but I am not sure this is going to be possible. Thanks for listening. :sign0085:


----------



## ron50

Hugs Mate,
      I got thru the sleep study. It was a blessing in disguise . WE had 35c that night and a wild storm so for once I got to sleep in airconditioned comfort. Not that having around forty leads attached to you is comfort. I now have to wait three weeks to get results. I am sorry you are so tired all of the time. A lot of people don't understand . They think that every one gets tired . They just don't understand waking in the morning and sitting on the side of the bed. You look at the alarm clock and it is six fifteen. You glance back a second later and it is ten to seven. Where did thirty five minutes just go. I hate waking in the middle of the night from a bad dream . Then it becomes a waking nightmare because I am breathing but getting no oxy. I have to grab the ventolin ,I always use a spacer and have a couple of deep breaths. I settle down after fifteen minutes but my sleep pattern is destroyed and I am almost scared to lay down unless it all happens again. Wishing you well Ann, Ron.


----------



## Ann Morgan

This is me:

1991: I felt something very painful going on "down there". I was on a two day Greyhound Bus ride from Idaho to Arizona and I was totally miserable. I had no idea what was causing the pain, maybe a bad hemorrhoid ? I get home, I look at the painful situation "down there". It looked like a blister. This is going to sound gross, but I popped it. Liquid came out and it smelled nasty. I did not go to the doctor. I spent almost a year wearing panty shields so that it would not leak onto my underwear. Almost a year later I went to a doctor and I found out I had an anal fistula. The doctor I went to was not a nice doctor. He did the operation and my fistula was taken care of. It was a terrible experience because of the mean doctor I went to. I had the operation in 1992. A colon/rectal surgeon did the operation. I have a lot of scaring from this operation. Every doctor that looks at me "down there" tells me they see a lot of scaring. 

In 1995 I went to my Primary Care Physician. He was an old guy. I hate old guy doctors. Anyhow, he ordered me to have an Upper GI because I was having health issues and he felt that this test was necessary. He basically sent me home with a bunch of anti-acids or something like that. The next year I had a Laparascopic Cholestectomy. I had my gallbladder taken out because I had gallstones I had been sick for about a year. A general surgeon did the operation. Even though I had to wait a month to get scheduled for this operation I was totally appreciative. 

So, now it was 1997. I started to have terrible diarrhea. Watery, yellow diarrhea. I was miserable. I eventually went to my Primary Care Physician and he prescribed something called Cholestyramine Powder. I did not know what this powder was, but it helped me with some of the diarrhea issues, but not 100% effective. I did not know how the powder worked and what kind of health issues it was prescribed for, I just knew that my doctor prescribed it for me and it helped me out. I never questioned anything. Obviously I was not interested in learning about my own health and what was going on with me ?

Late 1990's: I had a lower GI and a Flexible Sigmoidoscopy. I was seeing an Internal Medicine Doctor. Both tests made me feel uncomfortable.  Nothing was found. I believe they said I had IBS ?  My memory isn't the greatest. All I remember is still being miserable and not having the proper diagnosis. I gave up on doctors for a while after that. I mean, tell me why I am having this crazy diarrhea already !

2002: OMG, it was so painful "down there". I thought I had a huge hemorrhoid or something, so I suffered over an entire two day weekend. I showed up at my Primary Care Physicians office sobbing because of the pain. He examined me. He gave me a prescription for pain killers and I had an appointment the very next day to see a general surgeon. I drove to the general surgeons office the next day  ( sitting on my donut pillow in my vehicle and also bringing the donut pillow with me to the doctors office lobby ). The general surgeon saw me and sent me right to the hospital !  I had a rectal abscess. I had no idea what a rectal abscess was or what caused them to happen. I was in so much pain that after I was admitted to the hospital the nurses just kept giving me Demoral until I had the operation. Afterward I felt so much better. I had no idea what caused a rectal abscess and no one told me either. 

2006: I go to a Gastroenterologist and I get my first colonoscopy ( which should have been performed in the late 1990's when I was seeing the Internal Medicine Doctor ). I was diagnosed with Ulcerative Colitis and started on Asacol. Then later on I went on Lialda. I continued on with the Cholestyramine Powder. I was so happy to have a diagnosis and I liked this doctor. He knew my surgical history. He did not say anything about the anal fistulectomy or the rectal abscess being part of this whole Ulcerative Colitis thing. I was totally unimformed.

In 2009 I felt like something was going on "down there" and I recognized the symptoms. Instead of waiting to see my Primary Care Doctor or a Specialist I just drove right to the hospital emergency room before the issue became very painful. I was diagnosed with another rectal abscess. The doctors did the operation the next day. I was just so glad that I did not have to endure the pain this time than I had the last time. I still had no idea that rectal abscesses had something to do with a colon disease.

2014: I start having terrible constipation !  I almost could not even go to the bathroom at all !  I go to a new GI because my health insurance plan changed. He performed a colonoscopy and my results came back "normal". His office gal called me with my colonoscopy results ( why didn't I have a follow up visit to talk to the doctor in person ? ). She said the results were normal and the doctor wanted me to discontinue all of my colon medications. SAY WHAT !  I told the gal that I could not do that. If I don't take the Cholestyramine Powder I will get very sick and have terrible yellow, watery diarrhea. She talked to the doctor and she called me back. She told me that the doctor said I could take the Powder "as needed". I had been taking two packets a day for many years. I knew that now, in 2014, two packets would cause me constipation and that no packets would make me very, very sick. So I started to take only one Powder packet a day. This one packet a day has been working out for me, not 100% effective, but enough to make me feel more comfortable and I have only had two or three "emergency diarrhea" situations since just taking one Packet a day. I am still taking the Lialda pills because I still have some of the pills left in my pill bottle and I figured I would just keep taking them until they were all used up. I see this new GI tomorrow for a "follow-up". I am honest will all of my doctors, so I will tell him that I am still taking one Packet a day and I am still taking my 2 Lialda pills a day. 

2014: Until I joined this site I had no idea what Bile Malabsorption was or what it was all about. I recently looked it up on the Internet and I am 100% sure that I have it. I have all of the symptoms. When the Internet article mentioned yellow diarrhea I knew that was what I had ! The article mentioned the Gallbladder, etc. Not one of my Primary Care Doctors or my Specialists had ever mentioned Bile Acid Malabsorption to me. So now I know why I get the yellow watery diarrhea if I don't take the Questran Powder, it is because of the bile problem.

So, now here I am. I now know that the anal fistula, the rectal abscesses, the bile malabsoption issues all have something to do with my Ulcerative Colitis. So why did it take 22 years to figure this out. Does this happen to everyone !  I suffered with terrible diarrhea for so many years and I had accidents and I even had to travel for my job while I was having the diarrhea symptoms. I was very uncomfortable and felt very sick most of the time. I was on a vacation in San Francisco in 2001 with my sister. She remembers found memories of the trip. I remember having diarrhea the whole time and also vomiting and feeling absolutely terrible. 

That is my story, for now. Thank you for listening. 
I know that I don't have it very bad at all compared to a lot of you folks, so I shouldn't be whining. I have never had colon surgery or a seton or humira or stuff like that. But this disease is chronic, so I know it won't ever go away.  Family members don't understand this stuff. They don't understand that when you say you have to use the restroom that you mean NOW, and not ten seconds from now. But NOW. I was so happy at my mother's graveside service over Labor Day weekend in Minnesota that I did not have to have a BM all day long. I mean, where is a person going to find a restroom in the middle of farm country in rural Minnesota !

PS: I have also had a Partial Nephrectomy in 2007 on my left kidney. I now have a cyst on my right kidney. I have arthritis in my shoulders, neck and hips. I have iron and B12 deficiency. From what I have read on this website, all of the above health issues could be connected somehow with the Ulcerative Colitis ? I just started taking thyroid medication too. I really don't know what else could happen to me. Oh, and I suffer from Major Depressive Disorder and Anxiety. I am so sick and tired of being sick and tired. I am only 54 years old. :sign0085:


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## ron50

It is a shame we did not meet years ago. The bile salt malabsorption is a result of the gall bladder surgery. Ten percent of people who have their gall bladder removed suffer from bile salt mal absorption. Cholestramine ( mine goes under the heading of questran lite) is an old cholesterol medication used in conjunction with early statins. It binds the bile salts and cholesterol and takes the whole lot thru undigested. Tah Dahh no more diahorrea , I found one sachet was enough. I suffered for a year after I lost my gall bladder. I have used the questran for around four years and have found I no longer need it.Ann if I were you I would be trying to find a GI who specialises in Crohn's or even better one you can discuss issues with. I have trained a nephrologist and a gp. (Training starts with a rolled up news paper ). I talk with these guys and we actually dscuss the pros and cons of things before I go on them. Take care mate.. Ron.


----------



## Ann Morgan

Ron:

Thanks for your support.

I was writing a long response, when I hit a wrong button on my computer
keyboard and then my whole post was lost !  Ahhhhhhhhhhh !

Thanks for listening.

PS: I AM NOT GOING BACK TO THE GASTROENTEROLOGIST THAT
I SAW THIS YEAR. I CAN CHOOSE A NEW ONE NEXT YEAR.


----------



## Ann Morgan

PS: Okay, I know this is crazy, but I have been tracking all of

my doctors visits this year ( including tests I have had also ).

The total is currently at : 57.

That is not a "typo".   Yes, 57 "doctors" visits so far for me in 2014

( including blood draws, x-rays, scans, urine test, and ultrasounds.)

I still have four more "appointments" scheduled for November/December 2014.

:yfaint:


----------



## UnXmas

Ann Morgan said:


> PS: Okay, I know this is crazy, but I have been tracking all of
> 
> my doctors visits this year ( including tests I have had also ).
> 
> The total is currently at : 57.
> 
> That is not a "typo".   Yes, 57 "doctors" visits so far for me in 2014
> 
> ( including blood draws, x-rays, scans, urine test, and ultrasounds.)
> 
> I still have four more "appointments" scheduled for November/December 2014.
> 
> :yfaint:



Sounds like my life. Except that I count in weeks/months spent in hospital, where tests, consultations, etc. happen multiple times daily.  

I often think, though, that many outpatient consultations could be done over the phone or by e-mail. Do you get those appointments where you make a long trip to the hospital, wait for hours to see the consultant, who just ends up scheduling the next test, or referring you to someone else, or giving you a simple prescription? Don't they realise the time, money and energy that could be saved if they would just email or use a phone?!


----------



## lizbeth

UnXmas said:


> Sounds like my life. Except that I count in weeks/months spent in hospital, where tests, consultations, etc. happen multiple times daily.
> 
> I often think, though, that many outpatient consultations could be done over the phone or by e-mail. Do you get those appointments where you make a long trip to the hospital, wait for hours to see the consultant, who just ends up scheduling the next test, or referring you to someone else, or giving you a simple prescription? Don't they realise the time, money and energy that could be saved if they would just email or use a phone?!


It annoys me greatly about the effort I go to to be able to make it to an appointment, then maybe have to wait a couple of hours to have a 5 minute session with my Dr and come out feeling under valued, unheard and as though I'm making it up. It's so frustrating. 

I've never thought to count my drs visits but I will tomorrow, just out of curiosity.


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## ron50

It amazes me that a few letters after your name makes your time so much more valuable that that of sick people. It does not matter if you are a sick nuclear physicist you still have to wait for the doctor. What a pity it would be if we all got well. they would all be in the poor house. But there again it is up to them to make us well and that does not seem likely to happen so perhaps we should boycott them and again they would be in the poor house. Only trouble is that we would be dead. Good old catch 22.. Ron.


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## ron50

Got the results of my sleep tests today. Normal sleep , mild to medium sleep apnea. REM sleep severe sleep apnea. They are recommending a cpap machine. I will spend another night at the sleep clinic to see what mask best suits me and the settings for the machine then they write out a script for it and send it to my gp. They are making some alarming noises about whether I will be allowed to continue driving. I had better get my gp to start writing supporting notes.... Ron.


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## DougUte

I actually would like both my wife and I to take a doctor break for a while, but that isn't going to happen. 

I have Centralized Sleep Apnea (as opposed to Obstructive Sleep Apnea) and I am suppose to use a CPAP at night. I find the mask to be most irritating. I usually sleep with it about 4 hours a night then take off the mask so I can sleep better. Centralized sleep apnea is the type that occurs when the brain forgets to send signals for the lungs to breath. If the CPAP is one my face I get panicked - feeling I am being smothered. If the CPAP is not on my face I then will wake up gasping for air (at times). I feel like it is a nasty trade off.


----------



## ron50

If I don't use the cpap they are going to take my licence off me and not let me drive. I go to the sleep clinic tomorrow night to get it sorted out as to what mask and what pressure I need.  I also see my nephrologist tomorrow. I am still taking cyclosporine for nephrotic syndrome, It does not look like I will ever reach remission tho. I don't really want to go off the cyclo . I have heard too many stories where people come out of nephrotic syndrome and they go off the drug. The protein loss starts up again and now the cyclo does nothing. I have another strange problem I need to ask him about. Six years ago I was dxed with benign prostate enlargement. My prostate was estimated at 46cc and dimpling the bottom of my bladder. A month ago I had another ultrasound to see how much it has grown. It is now 27cc, nearly half the size it was . I can't find any information about prostate enlargement reversing?????  Ron.


----------



## jkf1957

Hi my name is Jane. I do have multiple illness and almost all my body except by brest have scars or is mishapened or swollen by my disease and illnesess.  For today I am just going to list and go to bed because I am hurting.  MY medical history looks like this:                                                              RENAL -  End stage renal disease   (R) glomerulonephritis  (L) congenital malformation, never developed.    Kidney transplant x3   Hemodialysis            HEARING - severe hearing loss form birth, (R) & (L) hearing aids.  ORTHOPEADIC  - Avascular necrosis in all leg and arm joints, rheumatoid arthtritis, osteoarthritis in all joints as well as lower back,  osteoporosis.  Several surgeries including bilateral knee repalcements and subsequent revisions and repairs.  Multiple stress fractures (mainly in feet when walking) displacements and broken bones.  ENDOCRINE - hypogonadism, hyperpara- thyroidism.  Situational diabetes, Vitamin D deficiency and transient hypercrolactinemia.  Lymphedema (R) right arm from one enlarged lympnode being removed.   GASTROINTESTINAL -  polyps, colon cancer x2, Crohn's disease, small intestinal blockage,  GERD=reflux, pain nausea, gall stones, stomach ulcers and polyps,  ileostomy.   GYN  -  benign ovarian mass x2, abnormal pap smears, HPV,  pregnancy=D&C w/ tubal ligation and more.


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## JasonD

yosemitegirl said:


> ... DNR on record... do not resuscitate. And I mean it. Not depressed as much as realistic.


And this is why DNR's/Advanced directives are up to each individual and should stay that way. I've nearly died from Crohn's as well. I was quite happy when I woke up each time.

When I got my last colonoscopy they asked if I have an advanced directive/DNR. I said "Nope. And if you have to put clock gears and a mini-steam engine in me to keep me going... Do it!"

And I stand by that statement. This is what I view as best, and realistic, *for me.*

_For context:_ I've had a moderate to occasionally severe, treatment resistant, cas of Crohn's for 31 years (allergic to all TNF-alph blockers, 6MP didn't work, only damaged the liver, Methotrexate is sortta working). Some years have been amazingly good. This last decade... not so much.

*I hope your doctors start taking your DNR seriously. This is what you view as best for you. They need to respect it, even if it isn't what they would choose for themselves.*


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## JasonD

*As for my illnesses:*
1. Crohn's Disease, with peripheral arthritis

2. Kleine Levin Syndrome

3. Asthma (mild)

4. GAD with Comorbid Major Depression (very much affected by activity of other medical issues)

5. ADD (mild)

6. Osteopenia (thinning bones) due to being on and off prednisone all these years.

7. B12 and blie-salt malabsorbtion due to losing the terminal ileum (the result of 3, soon to be 4, resections for Crohn's)

8. Possible IBS, but this is unclear given the overlap in symptoms with Crohn's.

9. Chronic upper back pain. (Possibly due to Crohn's peripheral arthritis, but seems to act up independently...)

10. Numerous food sensitivities, including but not limited to lactose intolerance.

11. Mild to Moderate (depends on the week) bursitis in the right hip.

**edit, forgot one** 12. Recurring kidney stones. 6 since 1997.

*Am I working?*
_Barely._ The combination of KLS and Crohn's have put me in a position of not being able to find new work should I lose my current job.  Depending on the relative activity of each I've missed up to 3 weeks out a month a few times in the past year.  My current employer is being insanely good about things... for now.

*The backup plan?*
Assuming long term disability insurance can kick in, I'll go with that as long as I can. (I started this job less than a year ago) Also, to better my chances of getting on SSDI, should I need to do that instead, I've started the process already.  A law firm will be taking a look at the paperwork my doctors have been filling out and will let me know what the odds are of me getting SSDI approved (i.e. are they willing to take my case)


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## Ann Morgan

Jason: You should be approved immediately !  If your lawyers don't take your case call Binder & Binder. They did a good job for me. Obviously with all of your health issues you should have an enormous amount of medical records and that will work in your favor. Some folks get approved right away. I had to wait 21 months for my SSD hearing. I won my case that day. Good luck to you and keep in touch. I cannot believe you are still working a job with all the health issues you have !  You sound like a very strong person. PS: I grew up in Minneapolis. I am now in Arizona.


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## JasonD

Ann Morgan said:


> ... you should have an enormous amount of medical records and that will work in your favor. Some folks get approved right away. I had to wait 21 months for my SSD hearing. ...  You sound like a very strong person. PS: I grew up in Minneapolis. I am now in Arizona.


Hi Ann, 
I hope AZ is treating you well. 

Thanks for your kind words. My hope is to NOT have to go on SSDI. As for strong or not... All I know is that I program computers for a living, and that my brain is always in overdrive (go ADD and GAD!) As such I find it difficult to not do something that people would consider work-like ... when I'm feeling well, or even so-so... which as you probably guessed, happens at random.

That and I'm quite belligerent.  It's been a_ since birth_ trend I'm afraid. You see I was born with my umbilical cord around my neck... twice ... if there was any restricted blood flow to the brain I refused to let it stop me from getting out of the womb and demanding food. I literally I refused to stop crying until they fed me. (It was lunch time, da**it and I was hungry!) Not much has changed since. :lol2:

As for the severity of the issues I have: most are readily manageable and don't degrade my ability to work or generally enjoy life outside of when the symptoms are active. In some instances ADD actually *helps* (hyperfixation can lead to tremendous productivity, and yes, sometimes, burnout) 

The two biggest concerns are Crohn's and KLS. And they are quite the pair to have going on at the same time! Ultimately I need both under better control. The silver lining is KLS _usually _ spontaneously resolves in a decade or so.

To quote Carl, the grounds keeper, from _Caddyshack_ "...So I got that goin' for me, which is nice."


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## JasonD

UnXmas said:


> ... Don't they realise the time, money and energy that could be saved if they would just email or use a phone?!


My doctors have finally entered the early to mid 2000s with their technical ability and the use of technology to facilitate communication. I started hounding them over a decade ago about this. They adopted the it about 4 years ago. I was quite glad when they did. 

Before that I was in the same boat as you.  It sucks. So if you have other options for doctors/facilities that embrace technology and open lines of communication via the phone, or email, explore those options.  Driving hours to be shuffled off to someone else after a cursory inspection is neither convenient, nor cost effective for anyone... (i.e. assuming, of course, this doc is already familiar with you and you've clearly communicated your concerns/symptoms.)

When used _properly_, communicating via the phone or email saves money, and improves the quality of care! 

By properly I mean as NOT a substitute for a lab work, radiology, palpation or other physical exams that tell the doc how things are progressing; and where there i_s an established history_ of clear, concise, effective communication between you two. This means a handful of visits that may fall into the annoying seeming waste of time category at the start, with them growing fewer and farther between.

By way of example, if my GI doc hears out my symptoms and says "I would like to see you before we try X,Y, or Z." I don't question it. He is the expert and I trust him to know when a hands on approach is warranted.  And I've been seeing him for over a decade. On the other hand, my Primary Care Provider (PCP) left the clinic I prefer a few months ago, and I had been bouncing among various PAC's and MDs for a while. 

I think I've finally settled on a PAC who knows her stuff.  However, since we're still building the rapport, right now I expect her to insist on seeing me, where my other PCP would may consulted with me over the phone.  She needs the "Jason experience" to be able to best judge when just a phone consult or an in person visit is warranted.

And of course, any doc that I feel I've established a rapport with who then later cops an "appointments first, ask questions later" attitude gets replaced the moment that becomes evident. Or worse yet, with whom I fail to establish a rapport. Both situations have been very rare in my life, but sadly, not absent.


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## UnXmas

Hi JasonD, I just looked up Kleine-Levin syndrome as I'd not heard of it before. I'd be interested to hear how it affects you and whether you've found any treatments that help with it, if you don't mind talking about it (only if you're happy to do so).

Sleep disorders interest me as I have all sorts of weird sleep behaviours. I recently started on modafinil, which is supposed to improve concentration and promote wakefulness. I'd read a lot before hand about how it causes insomnia, how people take it to help themselves concentrate but then are awake even when they want to sleep, and have to wait for the medication to wear off before they can sleep again. But I can take it, feel desperately tired and have to take naps during the day, and still sleep all night. I started a thread about it: http://www.crohnsforum.com/showthread.php?t=67990 

I expect my sleepiness is nothing like your sleep disorder, but would still like to hear about your experiences if you ever want to talk about them.


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## JasonD

UnXmas said:


> I'd be interested to hear how it affects you and whether you've found any treatments that help with it, if you don't mind talking about it (only if you're happy to do so)....


Hi UnX.
Wow. By the sounds of it, if you're not seeing a doctor specializing in sleep disorders, you should really consider it!

Sure, I'll share.

*The ultra-short version:*
I sleep lots, up to 20 hours a day. When awake I'm a zombie. Modafinil kept me awake, after taking its sweet time to kick in, but didn't help the zombification. It also triggered anxiety. Hence the new med.

*The long version:*
First, I was diagnosed with it this past July. It started a year ago, just on the heels of, or mid-Crohn's flare up. So it was tough to even figure out it was a separate issue. After many tests to rule out all sorts of other stuff (addisons, thyroid...etc.) the diagnosis came in.  KLS is a diagnosis by exclusion.

When it's acting up I feel tired beyond anything I've ever felt before and want nothing more than to sleep. All day. All night. I can't stress enough that for me, the urge to sleep is so all consuming so that it's downright scary. Food, which I love, doesn't rouse me enough to do more than consume enough to fall back to sleep. Sometimes I overeat while in this state and don't realize it until I'm out of an episode. I sleep through alarms and phone calls or don't remember turning them off/answering.  And all memories I have of events that happened during an episode are blurry and fragmentary. It's as if I'm remembering a long forgotten dream, even though I know its real.

When I am awake, it is at random times day or night with no discernible sleep pattern. Wakefulness seldom lasts more than 4 hours, usually 2 or less.  When awake, I'm a zombie; I could literally, and easily, be outsmarted by a 5 year old. Also I'm usually clumsy enough so I don't trust myself driving, even toward the tail end of an episode.  No amount of caffeine helps wake me.

Occasionally at the very tail end of an episode (especially multi-week ones) I will have a couple of days of insomnia and probably hypo-mania (I feel TERRIFIC, even despite the lack of sleep) Then I crash, sleep a lot one night and everything is back to a nearly normal sleep schedule.

I tried modafinil for a while. It physically woke me up if I took twice the initially prescribed dose. It took 4 hours to kick in, sometimes longer, and it didn't cognitively wake me much... A ten year old could have outsmarted me as opposed to a five year old. And worst of all it would trigger anxiety episodes. (So much for being able to do household chores when it's active!)

Interestingly, just after my last KLS flare, I bought CoQ10 on a whim. That stuff gave me insomnia as I took it in the evening. So then I read about it. (_Bad Jason! Read about supplements before buying and taking!_) 

Basically, it's what our cells (specifically the mitochondria in our cells) use to make energy.  It *seems* to be helping a little for overall energy related to my current Crohn's flare. Now if only it would take care of the rest of the Crohn's issues!  I'm hoping it'll also help reduce the severity of a KLS flare up too.


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## UnXmas

Thanks so much for sharing.



> Wow. By the sounds of it, if you're not seeing a doctor specializing in sleep disorders, you should really consider it!


I have enough diagnoses already, and see enough doctors already to want to go adding any more! I've been sleepwalking since I was a small child (and by "walking", I mean waking, talking, getting dressed, moving furniture around... basically anything I can do while awake, I can do while asleep). I also have night terrors, and recently found that there is a name for something else I've had my whole life: hypnogogic hallucinations. But these have never bothered me enough to see a doctor. The excessive sleepiness, my GP views it as just an inevitable result of being so ill, and it is true that that sleep symptom didn't come on until I was in my teens, which was when I started developing other health problems.

I know what it's like to start resorting to trying anything and everything, uping the doses, in an effort to feel better. Do you see a sleep specialist? Are your doctors still trying to find treatments for you, or did they just diagnose you and leave you to it?


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## lollyadverb

Just joined this group so thought I'd post my list. It is NOTHING like some of you. But I definitely have enough going on that doctors sometimes disagree about what to do -- a drug will help one issue but make another worse.

Most of what's happening lately is related to auto-immune issues that started just 6 years ago (arthritis, hidrodenitis, PG ulcers, canker sores, nonhealing wounds, permanent muscle weakness from past steroid use, etc.) Other stuff:

- Meniere's disease dx about 20 years ago; mild nausea most days, occasionally severe
- Asthma on and off about 30 years
- Borderline glaucoma (eyedrops sometimes)
- Gall bladder removed (multi drug resistant infection picked up during hospitalization for Crohn's; settled in gb)
- Reflux for 10+ years

The pill situation is ridiculous! But I've become good at taking several on just a sip of water. I feel such a triumph when I can stop taking something. 

So far, I have kept my job but it has been touch and go. Nearly lost it in 2013 but my boss stuck up for me when others wanted me out. However, he said it's the last time he can help so there's a good chance I will loose it after the next surgery -- flap surgery in June 2015 with a 50-50 chance it will make things better rather than worse. Since I'm 53, it's unlikely I will find another job in my (very specialized) field. 

This is when it sucks to be single! I'm worried about becoming jobless, homeless, etc.


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## UnXmas

Hi lollyadverb, I hope you're able to keep your job, as it sounds like it would be horribly unfair for you to lose it, but if you would like to talk to people in similar circumstances, the forum has this support group, if you haven't seen it already: http://www.crohnsforum.com/showthread.php?t=51690


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## lollyadverb

Thanks, UnXmas! I hadn't found this yet. I will definitely start following it!


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## cantthinkstr8t

- What do you have?

I have been diagnosed with:
Crohn's
Seizures
Ehler's Danlos
Small brain tumor
Fibromyalgia
Chronic Bronchitits
Eearly stage Lung Disease(never smoked)

I have 2 masses in my breast that I am being followed for(ultrasound every 6mos)
I am currently being tested for thyroid cancer b/c they found a 3cm mass on my thyroid

- How do you juggle all your appointments? 
Sometimes I find myself double booking.  I have different drs for different days.  Example: Tuesdays and Thursdays are reserved for Physical therapy. MWF are for regular doctors.
- Do you still manage to work?
I manage work but they made me agree to part time.  I kept my pay but lost paid vacations.
- Taking meds takes on a whole new meaning, how many are you taking?
I take 9 a day but have taken 15.
- Why does it seem like everything is a small white pill? Hope I took the right one...
- Do your doctors get along?
I hate my neurologist. I was fired from the one I liked b/c he said I was too complex of a case.  The new one has an office-literally-a desk and 2 chairs.

I love my PCP-he has been my saving grace.  We butt heads quite a bit but not in a negative way.  It's a good thing b/c I see him almost weekly.
- How do you know if it's X, Y or Z acting up again?
I am in limbo with that.  The drs tend to point the finger at other illnesses.


----------



## ttowntiger87

My illnesses consist of:

Crohn's
Ankylosing Spondylitis
Hemochromatosis
Hashimoto's Disease
Reynaud's Phenomenon

When I had my resection surgery, they found a serrated adenoma in my colon, and I have a history of elevated LFTs. 

I love my doctors, they are some of the best in the nation.

I agree with you, cantthinkstr8t...I am also in limbo as to which condition is causing me the most anguish at any given time. I am sick and tired of being both SICK AND TIRED!! Hope you get well soon!


----------



## Hop

I have Crohn's, asthma, POTS, and a genetic connective tissue disease called Ehlers Danlos Syndrome. It's difficult to tell what is a symptom, and what is a condition in its own right, and how to treat each one.


----------



## Ann Morgan

Hop said:


> I have Crohn's, asthma, POTS, and a genetic connective tissue disease called Ehlers Danlos Syndrome. It's difficult to tell what is a symptom, and what is a condition in its own right, and how to treat each one.


I agree with you. Which disorder or disease is causing which symptom ? It gets so frustating. I have multiple illnesses too. All I know for sure is that they all cause me fatigue. There is a thread here for fatigue ( Thank goodness).
Have a great weekend.


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## cantthinkstr8t

Hop said:


> I have Crohn's, asthma, POTS, and a genetic connective tissue disease called Ehlers Danlos Syndrome. It's difficult to tell what is a symptom, and what is a condition in its own right, and how to treat each one.


I have all but the POTS as well.  I also have fibromyalgia, RA and seizures. Not every day you see someone with Ehlers Danlos.


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## Ann Morgan

ron50 said:


> Got the results of my sleep tests today. Normal sleep , mild to medium sleep apnea. REM sleep severe sleep apnea. They are recommending a cpap machine. I will spend another night at the sleep clinic to see what mask best suits me and the settings for the machine then they write out a script for it and send it to my gp. They are making some alarming noises about whether I will be allowed to continue driving. I had better get my gp to start writing supporting notes.... Ron.


I want to request a sleep test.   Would my insurance company pay for it ?


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## Ann Morgan

lollyadverb said:


> Just joined this group so thought I'd post my list. It is NOTHING like some of you. But I definitely have enough going on that doctors sometimes disagree about what to do -- a drug will help one issue but make another worse.
> 
> Most of what's happening lately is related to auto-immune issues that started just 6 years ago (arthritis, hidrodenitis, PG ulcers, canker sores, nonhealing wounds, permanent muscle weakness from past steroid use, etc.) Other stuff:
> 
> - Meniere's disease dx about 20 years ago; mild nausea most days, occasionally severe
> - Asthma on and off about 30 years
> - Borderline glaucoma (eyedrops sometimes)
> - Gall bladder removed (multi drug resistant infection picked up during hospitalization for Crohn's; settled in gb)
> - Reflux for 10+ years
> 
> The pill situation is ridiculous! But I've become good at taking several on just a sip of water. I feel such a triumph when I can stop taking something.
> 
> So far, I have kept my job but it has been touch and go. Nearly lost it in 2013 but my boss stuck up for me when others wanted me out. However, he said it's the last time he can help so there's a good chance I will loose it after the next surgery -- flap surgery in June 2015 with a 50-50 chance it will make things better rather than worse. Since I'm 53, it's unlikely I will find another job in my (very specialized) field.
> 
> This is when it sucks to be single! I'm worried about becoming jobless, homeless, etc.


Check the Disability thread here if you need help with SSD.


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## Ann Morgan

cantthinkstr8t said:


> - What do you have?
> 
> I have been diagnosed with:
> Crohn's
> Seizures
> Ehler's Danlos
> Small brain tumor
> Fibromyalgia
> Chronic Bronchitits
> Eearly stage Lung Disease(never smoked)
> 
> I have 2 masses in my breast that I am being followed for(ultrasound every 6mos)
> I am currently being tested for thyroid cancer b/c they found a 3cm mass on my thyroid
> 
> - How do you juggle all your appointments?
> Sometimes I find myself double booking.  I have different drs for different days.  Example: Tuesdays and Thursdays are reserved for Physical therapy. MWF are for regular doctors.
> - Do you still manage to work?
> I manage work but they made me agree to part time.  I kept my pay but lost paid vacations.
> - Taking meds takes on a whole new meaning, how many are you taking?
> I take 9 a day but have taken 15.
> - Why does it seem like everything is a small white pill? Hope I took the right one...
> - Do your doctors get along?
> I hate my neurologist. I was fired from the one I liked b/c he said I was too complex of a case.  The new one has an office-literally-a desk and 2 chairs.
> 
> I love my PCP-he has been my saving grace.  We butt heads quite a bit but not in a negative way.  It's a good thing b/c I see him almost weekly.
> - How do you know if it's X, Y or Z acting up again?
> I am in limbo with that.  The drs tend to point the finger at other illnesses.


I have three nodules on my thyroid and one of them is growing. I had a needle biopsy on the one that is growing last year. I get regular ultrasounds on my thyroid in my Endocrinologists office. I get blood work done too. My next ultrasound is in December 2015. I take Levothyroxine for Hypothyroidism. I really don't know too much about this disease. I don't remember the dimensions of my three nodules ....  but I have the ultrasound test results in my files.  Have a good weekend.


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## Ann Morgan

My sister has many health issues too, like I do, but she doesn't complain about them like I do.  She does not talk about them with me very often at all.   She is not much for sharing stuff like that.  She does not dwell on her illnesses ?   Or maybe she believes in not talking about them ?  Anyhow, I am the opposite. Every illness and every symptom effects every part of my life. Why am I so different in the way I approach my multiple illnesses ?    I know I have Major Depressive Disorder and Anxiety and she does not.  Is this the "missing link" between her and I ?   She has RA, Sjogrens Syndrome, survived breast cancer in 1987, a type of lupus, some sort of scoliosis, maybe some basal cell carcinoma.  She lives in Idaho but is retiring here in Arizona for three months of the year. I told her to consider seeing some doctors here to get some second opinions about her diagnosis and treatments because we are a large city and have many good doctors and hospitals here. Boise, Idaho is not a very large city and probably has less options for doctors and treatments ?  Thanks for listening.  I am awake all night tonight. Just means more tiredness all day Sunday. ( Sigh)


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## rcmacdo

- What do you have?
Bipolar 2. Diagnosed about 5 years ago. Lamotrigine has kept me 'balanced' and normal. It's like a miracle med for me. Also, haven't been suicidal since I started using it. Type 2 has to do more with depression, and the type of 'mania' is feeling like you can do a million things at once, racing thoughts, anger easily, etc. Nothing like how type 1 gets euphoria. But, I haven't had those weird swings since I started that med years ago.

Menorrhagia and Dysmenorrhea. Diagnosed in 2008. Found out after bleeding heavily and in immense pain for 8 months straight. Having an IUD has been a lifesaver for it.

Agoraphobia. I've had this one for most of my life.

Eczema. Diagnosed in 2011. It was really bad in my armpits. I was scratching them so much, I was ripping off layers of skin and bleeding. They thought it was a fungal infection at first. I have to stay away from certain chemicals in products now.

Problems with my Eustachian tubes. I've always had this, but wasn't diagnosed until about 6 years ago. My ears produce too much fluid and wax. Even air pressure affects it. It can be very painful, and my sense of balance can be off. I'm actually told by doctors to use q-tips in my ears every day. I also have to use a kit to really clean them out. I can hear really well after that cleaning. 

Keratitis pilaris. Was diagnosed with this when I was around 8. My skin makes weird pillars, and sometimes they can painfully open. Or clog folicles, dry out my skin, etc. It reacts when I shower too much or too little, with the weather, if I pick at them, etc.

PTSD.

I've had clots in the past, and have to watch out for them. That time I had them, I had 60x the normal clotting factor and every air sac in my lungs had a clot. I had to be hospitalized for a week. 

A weird reaction where I was throwing up all day with no warning each time. Never figured out what it really was, but omprezole helps with it. I rarely throw up while on it.

Diagnosed with Crohn's at the end of July.

- How do you juggle all your appointments?
I actually don't have many apointments. When I do have appointments, I just add them to my calender, and set up reminders.

- Taking meds takes on a whole new meaning, how many are you taking?
I'm taking omeprazole (one pill before breakfast), azathioprine (1 small pill 3 times a day), balsalazide (3 huge pills twice a day. Was taking them 3 times a day, but luckily I went down in dosage), lamotrigine (1 pill 2 times a day), and a multivitamin. So, for the entire day, I'm taking 13 pills.

- Do your doctors get along?
Yeah, I think so. My gastroenterologist was recommended by my new primary. So, they get along ok. I haven't seen a therapist or psychiatrist in a while, though. (I should. Especially since I've been diagnosed with Crohn's, and my mom passed away 3 years ago...) But, they wouldn't have to get along, really.

I like the idea of a support group for people who suffer from multiple things.


----------



## ronroush7

Besides Crohn's Disease I have mild cerebral palsy, hypothyroidism, mild arthritis in the back and psoriasis.


----------



## JennyT

Just a quick hello as I just picked up on this group when the Admin replied to a personal thread. I have multiple illnesses but crohns is the one that causes me not to be able to work. I have retired early upon medical advice on an invalids benefit - I will be on an old age pension in another 5 years. I am a very young at heart 60 and when the arthritis isnt too bad I ride a motorbike 

I have Crohns, developed in my early thirties but mis-diagnosed for 25 years until I became bed-ridden and an overseas intern working in the little country town I was in at the time recognised the symptoms and begged me to go private and sort it out even if it meant taking out a loan to do so, I went private and the rest is history.  5 years later Im facing a resection right now following crohnic pain, vomitting, nausia and spasms due to a complicated restriction recently identified in an MRI. The symptoms of this disease define my life in an unpleasant way

I have Type 2 diabetes which is a pain as crohns allows me to eat sugary stuff like jelly lollies, some cake etc  etc without any problem. Having diabetes AND crohns is a pain as following both food regimes means there is almost zip left on the eatable list - I cheat 

I have Hypothyroidism diagnosed so long ago Ive almost forgotten what the symptoms were that I take meds for. I am allergic to thyroid pills that are not Goldshield brand.

I have sleep apnoea - I used a CPAP breathing machine for a while but woke up every morning with the mask ripped out of the machine (with the machine on the floor sometimes) and the mask on the other side of the room - clearly in my sleep I didnt like it!  I gave up on it.

I have Hypertension - well who wouldnt have high blood pressure with all that lot going on!  hahaha

Anxiety and depression - hereditary weakness in 4 generations but also not helped by crohns.

Knee osteoarthritis  - ouch - damn those stairs!  

Hearing loss - classic industrial hearing loss loosing the ability to hear in the lower decibel range up to around 30.

Psoriasis on elbows and knees

I also had to have a hysterectomy and ovaries taken out recently due to abmormalities.

And lastly a very debilitating side of crohns that some people get - arthritis spondyloarthropathy. That just means all my joints hurt.

Other than that Im quite normal bwaahahahahaha. Seriously - the motorbike crowd I get around with, other than my closest friends, have no idea at all - other than perhaps the rattle when I hit a bump on the road - taking 20 pills a day tends to make you rattle


----------



## Jennifer

Sorry to hear about everything you're all going through. Also sorry I haven't been active in this thread lately. My husband has a wealth of health problems too so I'm his only caregiver right now. Lots to do. :ybatty:

rcmacdo, I hope you don't mind my asking but what caused the PTSD? My husband has it too. It was brought on by waking during surgery. 

JennyT I'm glad you're able to still get out and do something you love.  I've never been on a motorbike (I'm assuming is the same thing as a motorcycle), always been afraid I'd just fall over at a high speed even though I can ride a bicycle ok. :shifty:


----------



## rcmacdo

Jennifer, I guess I don't mind saying what caused it. I just don't talk much about it, normally. It's mainly sexual abuse/assault. The first time I was sexually abused was when I was about 8 in daycare. Other times were by other people. I've also had 3 serious stalkers in the past. I didn't report them, so it made it feel worse over time. (Didn't think people would believe me, even though my friends did.) I was also harassed for about a month straight during high school just because I was Jewish. It got so bad, I told the principal and my counselor about it. (With the class it was mainly happening in, the teacher turned a blind eye to it. I even brought up with her.) They said they wouldn't tell him about me going to them. He found out after being forced to take special classes, and then being suspended. He got on campus, when he wasn't supposed to, found me, and tried to punch me. I dodged it, but the punch was so hard, it shattered the glass window behind me. (Those were the special reinforced hard to break windows.) Needless to say, that really got to me, too. 

I thought for most of my life that only soldiers or other people in the military got PTSD. But, I was told by most therapists when I brought it up, that it can happen to anyone. I'm sorry your husband has this, too. I don't wish it on anyone. Waking up during surgery sounds like it'd very traumatic.


----------



## Jennifer

I'm sorry you went through all that. *HUGS* My husband was also sexually abused when he was around 5 or so by a teenage boy and that was actually the beginning of his PTSD. I can't even imagine how horrible that would be. I'm so sorry. You guys need a serious break, having to deal with all these health problems as well.


----------



## ronroush7

Besides what I have mentioned, I have varicose veins.


----------



## Christi

I have Gerd , high blood pressure , Cd, Depression - anxiety , cyst on overy had this for a while now , suffer from migrains, kidneys make some problems for me to and i feel my joints are a problem now and again sometimes i cant even pick a cup


----------



## Christi

Ron i have also allot veins i believe its the same and it hurts


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## ronroush7

I am sorry,  Christi.  Have you been to the doctor about it?


----------



## Christi

No ron i havent should i mention this?


----------



## ronroush7

Is there anything you do for relief?


----------



## Christi

No i just stick it out , it even hurts when touching my legs especially my upper legs


----------



## ronroush7

Are yyour legs swollen?


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## Christi

Ron not that i noticed but my feet do swell


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## cheryl888

Hi I'm new to this thread.  I have multiple issues too unfortunately:

What do you have?

Thyroid Cancer
Crohn's 
GERD
Anxiety/Depression
Back/Hip Pain - just now finding out this could be related to Crohn's
Chronic Idiopathic Urticaria (hives)

Juggling appointments?  Google Calendar rules my life.  Seriously...not sure how I'd keep anything straight w/o it.  Not just my own doctor's appointments but the kiddo's activities, my husband's appts, etc.  

Medications - ugh too many to remember, I hate having to fill out the medication form at the doc office....I need a cheat sheet and an extra sheet of paper.  :lol:

Doctors - they do colloborate at times but I feel like I am the middle man and that can be so tiring.  For example I just recently started seeing a rheumotoglogist.  She wants to put me on Imuran to help with the back/hip pain and the Crohn's.  My GI doc is hesitant to put me on that because of the slight risk of malignancy and my history of thyroid cancer.  My endo who manages my thyroid cancer said he didn't think it'd be a problem to take Imuran or even to step up to biologics, but he would do some research.  So now it's like a waiting game for all 3 of them to figure out what is the best course of action.  In the meantime the GI doc Rx'd another med (Cholestyramine) to take in addition to the Pentasa, Canasa, and Entocort plus he sent me for a CT Enterography and I need to do a pill cam next.  

My biggest complaint at the moment is that because my crohn's isn't controlled, it's affected my absorption of my thyroid meds (levothyroxine).  I take a high dose to keep my TSH (thryoid stimulating hormone) supressed in order to decrease chances of cancer recurrence.  Apparently I'm not absorbing the meds properly anymore so even though my doc bumped my dosage up my TSH doubled since the last test.  Endo Rx'd higher dose and is hoping that helps bring it down.  GI rx'd the Cholestyramine which I haven't taken yet because one of the big side effects is 'malabsorption' of other medications and levothyroixine is on that list.  It's like a no win situation! :yrolleyes:


----------



## ronroush7

cheryl888 said:


> Hi I'm new to this thread.  I have multiple issues too unfortunately:
> 
> What do you have?
> 
> Thyroid Cancer
> Crohn's
> GERD
> Anxiety/Depression
> Back/Hip Pain - just now finding out this could be related to Crohn's
> Chronic Idiopathic Urticaria (hives)
> 
> Juggling appointments?  Google Calendar rules my life.  Seriously...not sure how I'd keep anything straight w/o it.  Not just my own doctor's appointments but the kiddo's activities, my husband's appts, etc.
> 
> Medications - ugh too many to remember, I hate having to fill out the medication form at the doc office....I need a cheat sheet and an extra sheet of paper. [emoji38]
> Doctors - they do colloborate at times but I feel like I am the middle man and that can be so tiring.  For example I just recently started seeing a rheumotoglogist.  She wants to put me on Imuran to help with the back/hip pain and the Crohn's.  My GI doc is hesitant to put me on that because of the slight risk of malignancy and my history of thyroid cancer.  My endo who manages my thyroid cancer said he didn't think it'd be a problem to take Imuran or even to step up to biologics, but he would do some research.  So now it's like a waiting game for all 3 of them to figure out what is the best course of action.  In the meantime the GI doc Rx'd another med (Cholestyramine) to take in addition to the Pentasa, Canasa, and Entocort plus he sent me for a CT Enterography and I need to do a pill cam next.
> 
> My biggest complaint at the moment is that because my crohn's isn't controlled, it's affected my absorption of my thyroid meds (levothyroxine).  I take a high dose to keep my TSH (thryoid stimulating hormone) supressed in order to decrease chances of cancer recurrence.  Apparently I'm not absorbing the meds properly anymore so even though my doc bumped my dosage up my TSH doubled since the last test.  Endo Rx'd higher dose and is hoping that helps bring it down.  GI rx'd the Cholestyramine which I haven't taken yet because one of the big side effects is 'malabsorption' of other medications and levothyroixine is on that list.  It's like a no win situation! :yrolleyes:


Welcome.  I am sorry you have all this going on.  If you haven't already, we have a section in here called Your At ry
You might want to go over there and tell us your story.  As far as remembering your meds for doctor's appointments, I believe there are apps on any other of your devices to help with that.


----------



## ron50

Hi Cheryl, 
                Sorry to see you with so many problems. I fully understand the implications with the cancer. I had stage 3c colon cancer. For whatever reason I have survived that for over 18 years but it appears that the chemo agents I had have caused some long term side effects. One of which is nephrotic syndrome of the kidneys. I am taking cyclosporine twice a day and at the moment it is controlling my protein loss. It also seems to be controlling my psoriatic arthritis but I have major hip and back pain. They think the back pain is a result of degeneration from two years of very high dose prednisone (75 mg daily). I have a history of peptic and duodenal ulceration and inflammatory bowel . I lost my gallbladder after a stone blocked my pancreatic duct and put me into acute pancreatitis. Since losing my gallbladder I suffer bile salt malabsorption. It has been treated successfully with cholestramine. It binds the bile acids and cholesterol and takes them thru undigested. I used to take my morning meds before breakfast then take the cholestramine (questran lite) after breakfast with some fruit juice 4 grm sachet. It did not seem to compromise my other meds. My nephrologist worries about the cyclosporine with cancer and I have to have six monthly skin checks for skin ca. The pred also put me into type two diabetes and I have an underactive thyroid and low testosterone. I hope you can manage the questran to get some relief , it was a miracle drug for me ,I went from around 15 bms a day to 2. It may help with the Crohn's as well , Best wishes Ron.


----------



## ronroush7

I meant we have a section called Your Story where you might want to include hours.


----------



## anitas.paul

Hi all 
Apart from the ibs/ibd/abdominal distension which has been continuous for over 2 decades with no relief i have copd stage 2 hypertension and nafld being checked out for possible sleep apnea did have cluster headaches and migraine which fortunately seem to have subsided. At the moment I'm on just 1 med which is for the hypertension and inhalers for the copd. Have an mri due later on today. Don't work


----------



## Jennifer

Oh my cheryl888, that's awful.  Any chance of getting your endo to step on it (the research that is)? Crohn's can definitely cause absorption issues and you've gotta have those meds to make sure that the cancer stays away. I can understand why your GI is reluctant but that's a double edged sword and I'm hoping that the Imuran etc is the dull side of the blade. I can't think of a member off the top of my head who had cancer caused by one of the medications but it is possible that there are some members. People rarely mention it as a diagnosis of theirs on the forum. I hope you can get something working for you soon.


----------



## ron50

I saw my gp today. The main point of my visit is my continuing journey of withdrawel from targin (oxycodone//naloxone). I had been built up to a dose of 80mg a day. Unfortunately it was no longer stopping pain but causing it, hypo-algesia they call it. It is taking 32 weeks to get off it and I am down to 5mg morning and ten at night. It has been a long haul strewn with opiate induced constipation and bottles of coloxyl and dulcolax. I got my usual scripts but I am becoming increasingly concerned about not getting enough air when I breathe. I use cpap at night for apnea but at times it does not seem effective. A few years ago I spent time in hospital with parainfluenza. It hit me so hard I was leaking troponin the heart attack enzyme. Whilst I was in hospital they told me I had severe asthma and sent me home with a symbicort turbohaler preventative and ventolin with a spacer.. I did the spirometer thing today plus the second test after 4 puffs of ventolin. The ventolin did not make that much difference. My doc looked at the results and came to the conclusion that what I had did not really behave like asthma but more like copd. Today I started a new inhaler for copd. I don't know whether I can stay on it tho. When I read the side effects it said that it was not kidney friendly and I suffer nephrotic syndrome (an unknown auto-immune form). I am going to have to be very careful and run it past my nephrologist before I commit to it. Sadly the dose I took this morning helped my breathing. It might be like nsaids anther drug that works but I can't take because of my kidneys. I have had some severe breathing difficulties during the past weeks. Ventoloin struggled to alleviate them and when I did three days on the symbicort preventer my blood pressure went off the scale and I am on five bp meds a day. I am getting tired of juggling hand grenades all the time. Why can't life be simpler. Ron.


----------



## ronroush7

ron50 said:


> I saw my gp today. The main point of my visit is my continuing journey of withdrawel from targin (oxycodone//naloxone). I had been built up to a dose of 80mg a day. Unfortunately it was no longer stopping pain but causing it, hypo-algesia they call it. It is taking 32 weeks to get off it and I am down to 5mg morning and ten at night. It has been a long haul strewn with opiate induced constipation and bottles of coloxyl and dulcolax. I got my usual scripts but I am becoming increasingly concerned about not getting enough air when I breathe. I use cpap at night for apnea but at times it does not seem effective. A few years ago I spent time in hospital with parainfluenza. It hit me so hard I was leaking troponin the heart attack enzyme. Whilst I was in hospital they told me I had severe asthma and sent me home with a symbicort turbohaler preventative and ventolin with a spacer.. I did the spirometer thing today plus the second test after 4 puffs of ventolin. The ventolin did not make that much difference. My doc looked at the results and came to the conclusion that what I had did not really behave like asthma but more like copd. Today I started a new inhaler for copd. I don't know whether I can stay on it tho. When I read the side effects it said that it was not kidney friendly and I suffer nephrotic syndrome (an unknown auto-immune form). I am going to have to be very careful and run it past my nephrologist before I commit to it. Sadly the dose I took this morning helped my breathing. It might be like nsaids anther drug that works but I can't take because of my kidneys. I have had some severe breathing difficulties during the past weeks. Ventoloin struggled to alleviate them and when I did three days on the symbicort preventer my blood pressure went off the scale and I am on five bp meds a day. I am getting tired of juggling hand grenades all the time. Why can't life be simpler. Ron.


I hope you find the right medicine to help you.


----------



## ron50

Thanks Ron , the new med is called Spiriva. I read up on it last night . apparently it is highly addictive( the last thing I need is another drug like oxycodone ) They also said it could cause severe nephrotic syndrome. I really think I need to talk to my nephrologist before I touch this stuff.  Ron50


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## ronroush7

ron50 said:


> Thanks Ron , the new med is called Spiriva. I read up on it last night . apparently it is highly addictive( the last thing I need is another drug like oxycodone ) They also said it could cause severe nephrotic syndrome. I really think I need to talk to my nephrologist before I touch this stuff.  Ron50


Agrref


----------



## Elle97

Hello - not been on the forum for a while, and jusy came across this thread!
I'm 18 (female). 

What do I have?:
• Crohn's disease (obviously :ylol2: )
• Polycystic Ovarian Syndrome 
• Ankylosing Spondylitis, effects my hips and knees as well as my back. 
• Osteoporosis (thanks steroids!!) - spinal fractures T6, T8 and T12 from sneezing... I have very weak bones.
• Psoriasis 
• Depression 

Appointments: 
Luckily, I have a joint Ank Spond and Crohns clinic. My rheumatologist also looks after my osteoporosis. So, my appointments are all almost compacted into one.

Medications: (15-17 in total but I'll probably forget some...) 
Humira (Crohn's and Ankylosing spondylitis), Fluoxetine (Depression), Oxycodone, Omeperazole (Crohns), Ranitidine (Crohns), Folic Acid (low folate), Calceos (Osteoporosis), Zoledronic Acid (Osteoporosis), Clonidine (Pain & sleeping tablet), Paracetamol (pain), Cyclzine,  Ondansetron (I vomit in pain and during Crohns flares), Cholecalciferol (very low Vit D), and Fresubin Energy (weight loss). 
Occasionally, if my Ankylosing Spokdylitis is really bad I have to take Etoricoxib - but if I take this my Crohns Flares. So, I have to weigh up which will be worse. 

Do my doctors get along?:
Mostly, my rheumy gets along with the gastro Doctor (I suppose they have to if they are sharing a clinic together). Nobody likes my spinal surgeon (long story). My physiotherapists get along with everyone too!! I see an endocrinologist once a year, and he's useless - my rheumatologist could ring, write, and email and she never gets any response. I've been told my hormones are out of balance (PCOS), and he's pretty much the only one who can sort it out, yet he says I only need to see him once a year because I'm fine ("fine" with my bone density score of nearly -4).

Sorry... I went on a bit of a rant!! I think this thread is a great idea, there seems to be plenty of us with more than one problem


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## ron50

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.


----------



## ronroush7

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.


Prayers and support.


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## ron50

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.


----------



## ron50

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.


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## ronroush7

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.


Hoping the best for you.


----------



## Jennifer

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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## ronroush7

I am sorry, Jennifer.


----------



## ron50

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.


----------



## Jennifer

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?


----------



## ron50

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.


----------



## CarolinAlaska

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.


----------



## ronroush7

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.


I am sorry she has had so many problems.


----------



## Jennifer

That is a lot to deal with so young CarolinAlaska. HUGS to you and your daughter.


----------



## DougUte

Wow. That is quite the list CarolinAlaska. Somebody so young dealing with all that. Hugs.


----------



## Ann Morgan

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.


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.


----------



## ChronicallyAwesome

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:


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## curlywurly

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.


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## rrhood1

Welcome curlywurly! Glad you could join us. We seem to just keep adding diseases as we go along.


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## GreenwichUK

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.


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## rrhood1

GreenwichUK - welcome!  Glad you could join us.


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## curlywurly

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?


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## ron50

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.


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## curlywurly

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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## Lynda Lynda

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.


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.


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## Lynda Lynda

*sends Ron50 a friendly hug* 
You are an amazing person.


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## Lynda Lynda

Hi curlywurly and rrhood1 and GreenwichUK.


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## Merv S

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


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## Merv S

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


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## Courtswife

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.


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.  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.


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