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?

 

[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) .

 

[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

 

[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.

 

[Kero]

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

 

[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?

 

[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:

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[Jennifer]

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:

 

[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.

 

[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

 

[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.

 

[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.

 

[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.

 

[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

 

[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.

 

[cdepaola]

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.

 

[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.

 

[Essieluv]

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:

 

[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).

 

[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.)

 

[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

 

[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.

 

[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.

 

[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?

 

[lsgs]

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!

 

[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.

 

[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.

 

[lisakuney]

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?

 

[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.

 

[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

 

[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

 

[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.

 

[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:

 

[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.

 

[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)))

 

[Jennifer]

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.

 

[carrollco]

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

 

[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.

 

[carrollco]

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

 

[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.

 

[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.

 

[Orchid]

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.

 

[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.

 

[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.

 

[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).

 

[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.

 

[carrollco]

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

 

[SarahBear]

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.

 

[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.

 

[Orchid]

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.

 

[ron50]

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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[SarahBear]

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.

 

[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.

 

[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.

 

[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

 

[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?

 

[Cat-a-Tonic]

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.

 

[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.

 

[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.

 

[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.

 

[carrollco]

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

 

[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.

 

[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?

 

[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:

 

[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)

 

[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.

 

[DougUte]

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

 

[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.

 

[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.

 

[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.

 

[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.)

 

[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.

 

[DougUte]

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.

 

[theOcean]

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

 

[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.

 

[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.

 

[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.

 

[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:

 

[valleysangel92]

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

 

[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--]

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.