Undiagnosed Club Support Group

[dahlfacepoet]

My brother and I are pretty much the same. Except he ended up good at sports. He might have a seizure disorder (still under investigation, we love to be undiagnosed) and he had migraines when he was little too. But we have the same hair (dirty blonde) and same eyes (blue). We are both pretty short too, but he's so much taller than me, I'm 5'4.

It would be interesting to find out how she ended up, healthwise. Is your bother still living with you Cat? Do I have that right, or was that someone else? My brother has been suffering from depression since our mother died. He recently took off to LA with a scary suicide note on facebook. he didn't tell anyone and just left. It was scary. He stayed out there for a few weeks and came back, eventually. But my worry hasn't lessened. I'm glad I can go see him whenever I need to, but I worry his anti-depressants aren't working.

 

[Sparkle2012]

Wow, lots of posts to respond to! Here goes.


Sparkle: My very limited understanding is, autism can run in families. It's not very well understood yet but it does seem to have some genetic component. I read an article a long time ago about it, I can't find the link now. I do have a cousin who is a high-functioning autistic. He's had a LOT of therapy and does pretty well now. He speaks and reads, he makes eye contact sometimes, he loves video games and Star Wars. I can tell he'd way rather just lose himself in his video game than have to talk to people at family gatherings, but he doesn't act too upset when we try to talk with him and bring him out of his shell a bit. He's 16 or 17 now, he was going to a normal school in elementary & middle school, and now that he's in high school he does online classes as he likes those better. He may never drive and probably will never be able to live on his own, but all things considered he's doing pretty well.

HI again! I was 27% on the autism scale begins at 32 I think. I'm quirky but I fit in socially, although fought shyness for years. My son though---- addicted to the computer...in particular War of the Worlds or some such thing.....severely addicted for a long time, gained weight, became pale from no sunshine. He is a computer guy in his career. He is a social phobe as are 2 of my uncles. I swear my neice has some traits of asp/aut or something....she is smart.....and she will build things by stacking stuff to be able to reach something (18 mo) and recently she had scabs on her knees out of no where.....she was "knee walking" around the house they discovered. Could she not feel the pain to the skin? Odd? She also has done some darling but odd things...like a special ritual when her daddy comes home where she twirls around 3 times and claps her hands before she lets him pick her up. There is occasional eye contact but not often and she does something odd with her hands which is slightly llike finger flapping when she is excited. She made a sound recently that sounded like "gwon gwom gonk" and the mother told me that was when she says when she gets hurt. It was a very clear enunciation of that "word." She is fascinated with hair and likes to pull it out of people and the cat and look at it between her fingers. Then she laughs. Sometimes I see her smiling at something for no reason. She is also a normal happy little kid...but she has those quirky things about her. Not sure why I got on that tangent...oh yea, .they took her to her doctor appt recently and she walked straight in and hugged the doctor. That's not an autism behavior I don't think. Her pictures are all of her eyes down. I saw some today in a swimming pool they bought her and all the photos were of her focusing with her hand on something.....they said later dirt specks on the pool. Time will tell but I wonder sometimes if all this stuff is somehow related to allergies causing issues with the immune system. Seems like there are clusters of things running in families that are kind of immuno-allergy stuff. What if....Crohns was just an allergy to some chemical in food that your body is sensitive to? Sorry for the drifting around....just sharing random thoughts.

 

[bozzylozzy]

Lots of posts haha!
Hope you are all well?

My cousin is autistic, when he meets somebody new he always talks through his younger brother. I love how close he and his brother are. And then the more he gets to know you.. he will start talking to you by himself. He was always obsessed with flags of the world.. I havent seen them for a long time.. but I think as he's getting older he's coming out of his shell a bit more. I see on facebook that he's been playing rugby and stuff.

@dahl - that does sound really scary about your brother.. I dont know what I'd do if my brother did that. We are so close.. and how has pretty much cut himself from the family.. so he relies on me very heavily (which is hard to handle at times)

@cat - never mind genetics.. you've got us as your friends.. and we are pretty awesome hehe!

 

[Cat-a-Tonic]

Dahl, you got it right. My brother lived with me for a year and a half (and drove me #$%&* crazy the whole time!). He's been out of my house for about a year now. He still lives in the same city as me but we hardly ever see each other. Sometimes he still gets mail delivered to my house so I mostly see him when he comes to pick up his mail and that's about it. And that's fine with me, we don't really get along so having limited contact is best.

Wow Dahl, that's frightening about your brother, I'd be worried too. My bro has talked about suicide before, but he hasn't made any attempts or run away or anything like that. When he was about 23, he made some comment in front me and of our mother about how "25 sounds like a good age to check out". So that made us all kind of nervous for awhile, but he's 27 now and hasn't attempted so I guess he's okay. My bro is mostly a dreamer and I think he gets depressed because he feels like the world owes him so much that he hasn't gotten - he's got a lot of entitlement issues. For example, he taught himself computer programming, and sometimes he gets really angry and rants about that Mark Zuckerberg guy because he sees no difference between himself and Zuckerberg, so he thinks he should be a bajillionaire for doing computer stuff too. Stuff like that is my bro's main issue. He feels he should be rich and powerful and happy, like that's his right. He feels insulted by the world that it hasn't happened yet.

Bozzy, you guys ARE all very awesome! How are you doing today?

How's everyone else? Me, I'm not doing so great lately. It's been raining every day and my lower back/right hip area has been hurting a LOT. It feels like the right side of my lower back, but I think it's either referred hip pain or it's my arthritis spreading from my hip into my back? Either way, that rheumy appointment can't come soon enough. I was having this pain the other day too when I had x-rays done, so hopefully that means it'll show up on x-ray and the rheumy can help me. My appt isn't until July, but I am on the cancellation list too so hopefully they can fit me in sooner. The right hip usually hurts when it snows, but this is a different pain so I'm not quite sure what that means. I've even had to cut back on my exercise due to this stupid pain! I was going to ride the bike yesterday but did some yoga yesterday (which only seemed to make things worse - oddly a hot bath also made it worse!). I'm getting a massage tonight, so if that makes it worse too then I'll probably be in a wheelchair before the weekend is over. Ugh. Stupid broken body!

 

[Cassy]

I don't usually share online stories or jokes, but could not resist after my recent experience with some doctors. I think most of us here can appreciate this.

Epidemic of Disorders in Doctors
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.

Patients expressing unfamiliar complaints to their physicians often induce the "It's All In Your Head" (AIYH) or the "That's Impossible" response in doctors suffering from these behavioral problems and personality disorders.

Physicians who manifest the metaphysical belief system of "If we don't know about it, then it doesn't exist" are suffering from a psychological condition known as "Doctors with Unexplained Medical Beliefs" or D.U.M.B.

DUMB doctors are comprised of two categories that are characterized by a) those who are feigning to be DUMB for monetary gain: "Medicalingering", and b) those who are not in possession of sufficient information to render intelligent diagnoses: "Factlessitious Disorder".

Physicians who are predisposed to this condition place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented to them.

This somatiform obsession with psychological etiology, "Psychosomatization Disorder" or "Psychologizing" is a distinctive characteristic of the illness and should be considered a warning sign that the individual is not rational and may in fact be DUMB.

DUMB disorder may be concomitant but should not be confused with Signs of Thoroughly Umistakable Physician Intelligence Deficiency or "S.T.U.P.I.D." since a STUPID physician is uniformly incompetent while a DUMB doctor is only mentally paralyzed into "psychologizing" by unfamiliar symptoms and complaints.

An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors and to determine the impact that physicians suffering from these conditions have on the health care system and their patients.

 

[lsgs]

I don't usually share online stories or jokes, but could not resist after my recent experience with some doctors. I think most of us here can appreciate this.

Epidemic of Disorders in Doctors
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.

Patients expressing unfamiliar complaints to their physicians often induce the "It's All In Your Head" (AIYH) or the "That's Impossible" response in doctors suffering from these behavioral problems and personality disorders.

Physicians who manifest the metaphysical belief system of "If we don't know about it, then it doesn't exist" are suffering from a psychological condition known as "Doctors with Unexplained Medical Beliefs" or D.U.M.B.

DUMB doctors are comprised of two categories that are characterized by a) those who are feigning to be DUMB for monetary gain: "Medicalingering", and b) those who are not in possession of sufficient information to render intelligent diagnoses: "Factlessitious Disorder".

Physicians who are predisposed to this condition place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented to them.

This somatiform obsession with psychological etiology, "Psychosomatization Disorder" or "Psychologizing" is a distinctive characteristic of the illness and should be considered a warning sign that the individual is not rational and may in fact be DUMB.

DUMB disorder may be concomitant but should not be confused with Signs of Thoroughly Umistakable Physician Intelligence Deficiency or "S.T.U.P.I.D." since a STUPID physician is uniformly incompetent while a DUMB doctor is only mentally paralyzed into "psychologizing" by unfamiliar symptoms and complaints.

An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors and to determine the impact that physicians suffering from these conditions have on the health care system and their patients.

LOVE this!!! Made me smile!

 

[dahlfacepoet]

Cat, I'm glad that he's out of your house now and that he isn't causing you any stress. He seems like he has some ego problems that need to be dealt with haha.

My brother and I are pretty close. Since he still lives at home and I am stuck in my house all the time, I don't him a lot. We were our only friends growing up since we lived in a sort of bad neighborhood, we weren't allowed to hang out with the neighbor kids because they were scary (one brought a gun to school at 5yrs). My brother doesn't have any of the anxiety I have, he's so charming and outgoing he can do anything he wants. I am older, so I feel guilty for not taking better care of him since our mom died almost 4 years ago. It's been tough for both of us, he was 17 I was 20. The only reason I avoided anti-depressants is because I hated my first session of therapy so much I never went back. I fought my depression by myself which was not the best idea. But he came home after a few weeks and found a job right away (amazing in our city). He's got the same amount of stubborn jerk I have that we got from our father. We have the same sense of humor and viewpoints on most things. I wouldn't be able to handle losing him. I'm happy he's home back with his therapist and my dad.

Thanks for letting me vent about that some.

I'm not doing well, my body has been tricking me with this flare. My symptoms aren't the same as a usual flare, but my pain is through the roof. I don't know what to do to calm it if my tramadol isn't working. I have awful cramps and waves of pain through out my abdomen, not just that one spot it usually is.

Last night I couldn't tell if I was having a tachycardia episode or if I was just in a lot of pain my heart rate was up. I was feeling really dizzy and flush, but I felt better as soon as I laid in my cool bed, which told me it was tachycardia. The pain was still there, I just wasn't feeling like I did before.

A tach episode sent me to the ER in Jan. It was so scary. We rushed to the hospital because I stated to get really hot and dizzy. I could feel my heart pounding in my chest, it was too fast to time. I was smart enough to take my heart pill before we went to the ER. My ekg showed my heart rate was 138 but no heart attack (I had no idea what it was at the time, fearing it was a blood clot all the way there. I went through another slew of tests, the ekg was the hardest because I was shaking so bad she had to restart it like 7 times. My heart rate went down almost immediately after I got my own bed, thanks to the heart pill. They gave me an IV (it took 3 pokes from this newbie nurse) of saline and was discharged 5 hours later. It was so scary, my skin was blue.

The same thing happened about a month later but I knew what it was this time. I got half naked to cool down faster, took my heart pill and drank as much water as I could. My heart rate went down from 133, 122, 111 and finally down to 99 within 15min. I gave a little cheer when we hit normal. I really didn't want to go back to the ER. I would like to know what causes the shaking, because it's crazy bad. I'm so glad we were able to get it under control. I'm so glad my honey was there to help with it all.

 

[lsgs]

When do you guys normally consider going to A&E/the ER?

I've been having episodes of what seems to be quite severe pain lasting right through the night. I get a bit of respite for a couple hours during the day then it's back as soon as I eat again. I can't sleep properly and I'm ready to crack up, but I don't feel like A&E would do very much :-/ Not sure where else to turn when the painkillers might as well be smarties!! The trouble for me is I know it will eventually pass if I ride it out, but some relief would be awesome.

 

[Cat-a-Tonic]

Dahl, do they think the heart issues and digestive issues are related? That sounds so scary, just horrible. I have issues with various different parts of my body at this point, but fortunately (knock on wood) my heart is still fine. I don't know if that's because I've been working out so much. When I first started working out, if my heart BPM got up to 150-160 then I started feeling not so great, like I might pass out. Now I can get it up to 170 BPM just when I'm warming up and I still feel okay, no faintness.

Yeah, my brother definitely caused me a lot of stress when he was living with me. I think my dog is the only one who misses him, ha ha. My bro and I were sort of close when we were growing up, since a lot of the time it was just the two of us - my mom worked long hours and my dad was kind of neglectful (he preferred watching TV all day to being bothered with parenting). We did have our share of sibling rivalry and other issues - my bro was always the favorite and we both knew it, our parents enforced a lot of rules on me that they didn't enforce on bro, etc. That kind of stuff does damage a person even into adulthood, and I don't think my bro and I will ever be close like friends. We're more like acquaintances now.

I hope everybody has a nice, relaxing weekend. I'm getting a massage tonight and am just going to do stuff around the house most of the weekend. My hubby works all weekend so I'm looking forward to some nice quiet alone time.

 

[Cat-a-Tonic]

lsgs, I say go get checked out. The ER may be able to run tests. In my local ER they have a CT scanner and they can do x-rays and some bloodwork too. They can also order rush appointments with specialists if need be. The general rule on the forum is, if you're questioning whether to go to the ER, then you need to just go. If things are bad enough that you're considering it, go get checked out. Better safe than sorry! Extreme pain could indicate anything from kidney stones to a bowel obstruction. You don't want to wait on it if it's something serious. Good luck and I hope this episode passes soon! Please update us later on if you went, and what they found out. Hugs!

 

[dahlfacepoet]

Cat, they don't know why I have tachycardia. I think it's related, but none else seems to think it is. It's so scary. I used to have a relatively low heart rate, when I would work out I'd struggle to get my heart rate up to 130 and now it's up there all the time. I quit smoking and have been limiting my caffeine to make sure I don't have another episode. My cardiologist (I still can't believe I have a cardiologist) says that I just have a fast pacemaker (the little guy in your heart that tells it how fast to go) and that I may just be on beta blocker for the rest of my life or it might spontaneously get better in a few years. I hate that. I hate that my heart is indefinite limbo. I had no idea it was too fast before my GP listened to my heart, which makes me wonder why, in an entire year, no one ever listened to my heart before this guy. He threw me on an EKG right away and it was 132. I was shocked. He was convinced it way hyperthyroid but I knew he would find nothing. It makes sense to me now, I was perilously close to fainting every time I stood up. I would get light headed and my sight will go all fuzzy for a second. I would just stand there until it would pass a few seconds later. I would bring it up and they would just say it was my blood pressure. It scares me how close I was for so long to having something awful to my heart. I wish I had known sooner. I am still on a high dose of atenolol to keep my heart rate in the normal range, and I worry sometimes it's not enough since I've had those episodes. Scary scary. I never thought it would be my heart. It scares me a lot and is always on the back of my mind any time I'm doing something other than sitting on the couch.

Isgs, I agree with Cat. I think that rule is the safest to go by. Pain is bad.

Cat, my honey is like that with his sister, except they never got along. They are really close in age together and they treat his sister as the favorite and as the baby with 0 responsibility, even now! It's odd how different they are from each other even though they had the exact same parents. I at one point had to inform him that he is being contrary to his sister on purpose and that he should stop. It made dinners with her a lot more bearable, but she never grew up and still acts like a child in mid-tantrum. Siblings are tough.

 

[lsgs]

Thanks for the advice guys. I went to out of hours and my bp was 150/100 and my pulse 140bpm from the pain so doc got me admitted on a surgical ward thinking I am having complications from steroids. They want me on morphine but I'm too scared of it! Docs on the ward have not been very useful, they didn't even test my esr or liver function! Looks like its just getting the pain under control then discharge. They say it all points toward inflammatory bowel disease... Just had my dinner so the fun and games is about to begin again

 

[Maree.]

Isgs sorry to here your in so much pain, glad to hear they admitted you.
What is it about morphine that scares you, have you had bad experiences with morphine in the past?

Please keep up posted on how you get on.

 

[gatheringroses]

Wow, lots of posts to respond to! Here goes.


GatheringRoses: I'm sort of suspicious of generic Asacol from a Canadian pharmacy. A lot of people in the US get meds from online Canadian pharmacies and it seems to me like a lot of the online ones are shady. There really shouldn't even be a generic Asacol out yet, so I'm wondering if the generic Canadian one is just straight up mesalamine but without the special coating that makes it Asacol. There are a lot of mesalamine drugs (Asacol, Pentasa, Lialda, Canasa, Rowasa, Apriso, etc) - they all contain the same exact medicine, but are delivered differently to different areas of the digestive tract, that's really the only difference. I'm going to try the Asacol HD, it should be the same basic medicine but stronger, so to counter that I'll take fewer pills. I think that will work. I hope so.


GatheringRoses again: So maybe I'm just a neuro-typical genius then with a few quirks? Ha ha. Actually, my maternal grandfather (who died many years before I was born) was supposedly 2 IQ points away from being a genius. That's the story I've always been told. He would devour books and could do difficult puzzles in a snap. I tested to a very high IQ as a toddler (I don't know what my number was, I was just told it was very high). Apparently there was some lady from the county, whose job it was to go around to all the 18 month olds and test their intelligence. So for example, she'd show a picture of a collie dog and ask the kid what it was. Most kids would say, "doggie" or "woof woof". I said "collie!" I was so young, I don't remember any of this, so I'm just going by what my parents have told me, but they said I just blew this lady out of the water with how smart I was. She was thrilled, she said I was one of the most intelligent children she had ever tested. She was super excited to come back 5 years later and test my brother - she had such high hopes for him. He tested totally average though, I think he did even say "woof woof" at the dog question. But when we were teenagers, my brother and I took another IQ test together just for fun. My brother scored higher than I did (again, I don't remember our numbers, I just remember my jerky kid brother rubbing it in my face that he's smarter than I am). He's really smart in some ways, he just doesn't always show it (he's impulsive, he has no common sense, and he does drugs). So I do in some ways feel like I've gotten stupider over the years or at least my sharp intelligence has dulled somewhat. I'm no genius - maybe I was when I was really little, but I peaked at an early age I guess.

Well, based on my (para-profesional ) knowledge, chances are, you're still pretty smart (if you tested high young). Intelligence is pretty stable, but I think more after the age of 4. I've attached the article I wanted to send you. If it rings true to you, let me know, and I'll connect you with more resources that you may find helpful.

As for the drugs... I clearly don't know what I am talking about, so sorry for the bad advice!

 

[gatheringroses]

Oh, also PM me when you've downloaded the article/if you don't want to read it. I don't know if I am allowed to leave it online indefinitely

 

[gatheringroses]

Gatheringroses, that makes sense. I have ulcers in my mouth that come and go. I've had them ever since I hit puberty. I had a dentist tell me that it was some virus that was only found in people with a really high IQ. I never quite bought it, but it made me feel good to think I was smart. I've never been tested though, so I couldn't tell you if I am or not. All I know is my brain doesn't work like other people's, which could go either way on the Aspie or neuro-typical genius. haha.

I recommend that you download the article I posted in my last post, and read it. See if it resonates with you. If it does, feel free to message me, and I can connect you with more resources. I am really fascinated (academically) with high intelligence and health, so there are a few resources I can recommend.

 

[lsgs]

Isgs sorry to here your in so much pain, glad to hear they admitted you.
What is it about morphine that scares you, have you had bad experiences with morphine in the past?

Please keep up posted on how you get on.

I remember my gran telling me about all her experiences on morphine and it's really put me off! She hallucinated there were bugs all over her bed and there were pink elephants flying around the room and stuff. That's always put me off but I think next time I might try it because the weekend I've just had was so painful, it was absolutely relentless. When I had fentanyl it made me feel really funny and I'm generally not that keen on the feeling, I'm not even that keen on the buzz dihydrocodeine gives me lol.

Anyway I'm back home, going to see GI tomorrow which should be a little more interesting now :-/ Interesting that both the junior doctor who clerked me in and the consultant agreed it sounds like IBD yet the GI consultant I've been seeing for 5 years still can't get it into his thick skull.

They told me to come back in if I have pain that isn't controlled by dihydrocodeine... Pretty much every day I'd be in then??! Nice to know I have that option though.

 

[bozzylozzy]

Lsgs - I've only just read your messages about A&E... and my advice is exactly what you did.. go to the out of hours GP and then they will admit you to hospital without having to wait ages in A&E.

When my GP hought I had IBD or grumbling appendix.. she told me point blank that A&E wouldnt be of any use. And then two days later she admitted to the gastro investigations unit. I think like you said - they treat the acute immediate symptoms and discharge you. Its more of a place for if things are life threatening or rapidly getting worse. (I have been loads though haha)

But this does depend on what services are available to you. Because my out of hours GP service are there all the time.. and then if they want you to go to hospital (I feel less of a hypochondriac with this)

How are you feeling today? :hug:

 

[bozzylozzy]

Talking about morphine.. I had oral morphine after my little one was born, and I was fine. But tramadol on the other hand... oh em gee .. that did not agree with me one bit. I had to be laid completely flat or else I would pass out even just sitting upright. Apparently my mum has the same reaction to tramadol.

Good luck with your appointment tomorrow

 

[lsgs]

Lsgs - I've only just read your messages about A&E... and my advice is exactly what you did.. go to the out of hours GP and then they will admit you to hospital without having to wait ages in A&E.

When my GP hought I had IBD or grumbling appendix.. she told me point blank that A&E wouldnt be of any use. And then two days later she admitted to the gastro investigations unit. I think like you said - they treat the acute immediate symptoms and discharge you. Its more of a place for if things are life threatening or rapidly getting worse. (I have been loads though haha)

But this does depend on what services are available to you. Because my out of hours GP service are there all the time.. and then if they want you to go to hospital (I feel less of a hypochondriac with this)

How are you feeling today? :hug:

Yeah it was NHS 24 that sent me to the OOH GP and I have to say he was really nice and also very thorough. He gave me an injection of something, some pills to take, made me wait 30 minutes to see if they helped then retook my obs and when they didn't improve he phoned the hospital right away. He thought gallstones/pancreatitis from the steroids but as it was gone this morning (only took 48 hours :-/ ) they let me go. Now I've had lunch it's back again but not shoot-me-now severe like it had been. I'm so worried about my job and how I'm going to function if this continues Stupid disease!

Enough of my moaning haha. How are you?

 

[Maree.]

Isgs hope the GI appointment goes well and your GI is more open to considering IBD.

As I mentioned to Gabi I don't have IBD but have been through the full pain management circus (for Atypical Trigeminal Neuralgia). Worth keeping in mind that opiod tolerence is pretty common when they are used frequently for long periods.

How long have you been struggling with this level of pain & Are you seeing a Pain Management specialist at all? My experience is that most doctors who don't specialise in chronic Pain don't have much of a clue when it comes to the difference in approach required to treat Chronic Pain (pain that last longer than 3 months) compared to Acute Pain.

 

[lsgs]

Isgs hope the GI appointment goes well and your GI is more open to considering IBD.

As I mentioned to Gabi I don't have IBD but have been through the full pain management circus (for Atypical Trigeminal Neuralgia). Worth keeping in mind that opiod tolerence is pretty common when they are used frequently for long periods.

How long have you been struggling with this level of pain & Are you seeing a Pain Management specialist at all? My experience is that most doctors who don't specialise in chronic Pain don't have much of a clue when it comes to the difference in approach required to treat Chronic Pain (pain that last longer than 3 months) compared to Acute Pain.

No I've never seen a pain management specialist which is astounding tbh. Apart from the first 9 months of pred the pain has been at this level for years although this weekend I think was about the worst I've felt pain wise. What approach do you mean in treating chronic pain as opposed to acute? I've been through the whole CBT thing (numerous times!) and it made things worse for me as I started to focus on it and panic everytime I felt a niggle!

 

[Maree.]

CBT I loved but I'm aware it doesn't work for anyone. Something clearly went wrong with the way your CBT was done as it's meant to have the opposite effect of teaching you how to tune down your response to pain not increase your vigiliance.

I'm not sure it TENS machines work for abdominal pain (if my CBT had not been effective next option was having a TENS style implant in the base for my skull) or if there are other options that work.

But even if you are sticking with a drug based approach what I found was that the doctors at the Pain Management Clinic who we're anaesthesticsts who specialise purely in managing long term pain had a lot better understanding of the range of drugs available and the different delivery mechanism for them (advantages/disadvantages of different approaches) and we're better able to to tailor combinations of drugs that helped.

 

[bozzylozzy]

I completely agree with what maree said - you need to have your pain managed whilst you are having tests.

you mentioned about work - how have they been treating you while you have been going through this?
i have been ok - i think the sulfasalazine has started to help my joints.. im no longer getting any deep aching pains!
but my headaches have been horrendous, so im hoping the propranolol kicks in soon and starts to prevent my migraines xx

 

[dahlfacepoet]

Isgs, I'm glad you went and that you at least got some opinions and a little treatment for your pain. I am allergic to codeine, so when I go in for pain I get morphine right away. I've only had it once though when I was younger and went to the ER for belly pains (surprise surprise) that they told me was gas. I remember sleeping a lot and waiting for the CT scan in the hallway wasn't as bad as it usually is. I remember be scarred of morphine after reading To Kill a Mocking Bird. I don't blame you for being afraid of it. How are you feeling today? Good luck with your GI appointment, maybe it won't be so disappointing now. You mentioned being worried about your job, how are they handling your absences?

Bozzy, I'll read the article! I find stuff like that interesting. I remember I would get in trouble in elementary school because I would do my homework but I wouldn't turn it in. For some reason I didn't see the point in turning it in so I would get awful grades and get yelled all the time over this. I just couldn't see that I was doing anything wrong, I did the homework so why the hell are they complaining? I know I learned this stuff, so why do I have to prove it? I don't think ever out grew that line of reasoning.

Maree, thank you for all that information. I haven't seen a pain specialist either, but I've definitely considered it.

Tomorrow is my GI appointment. We'll see what happens. I will have to get a referral to a new neurologist and beg her to get me in as fast as possible so we can rule out MS, at least. I really need to rule out MS, or if it is MS I really need to start treatment. Maybe I'll get a script for pred, since I responded to my trial. I always get nervous for doctor appointments. I have to tell myself not to get my hopes up, but I am excited to see this doctor again, she seems like she is going to be the one to help me. My last GI refused to prescribe pred without a dx even though I responded on Entocort, though not enough. I guess I see his point, but I really want to feel better. I know pred has nasty side effects, but I also know it will help me. I can't help but get a little excited, she knows something is wrong with me. She is the only doctor that believes I'm not healthy. I deserve treatment and I am glad I found a GI who is willing to treat me. My fingers are crossed.

How is everyone else this weekend? It's been so windy here lately and I really want to spend sometime outside before it gets to hot and I am a prisoner in my own home again.

 

[bozzylozzy]

Dahl - It wasn't me who posted the article. . It was gatheringroses who posted it
Good luck with your appointment tomorrow, please let us know how you get on xx

 

[gatheringroses]

lsgs, sorry to hear you're having a rough day. I hope that it doesn't impact your job.
How is everyone else doing?
I've actually got a question related to sleep. I am on some pretty strong sleeping pills, but I've used them so much that they don't work anymore... I am, however, in A LOT of pain at night, and aspirin isn't curing anything (or heat, or any other over-the-counter stuff). Do you guys have any recommendations? I am thinking about trying to convince my doctor to give me some codeine in exchange for lessening my sleeping pill prescription.. Lorozapam seems to work, but that's apparently MORE habit-forming than the pills I am currently on.

 

[dahlfacepoet]

Agh I my brain is on the scramble today! Gatheringroses, I downloaded the article! Poor bozzy I sent him a pm and everything! Sorry again, I was referring to the last page and came over here, my brain must have done some strange thing to make me think Bozzy uploaded the link.

Gatheringroses again, what do you take for sleep? I am taking amitriptaline, to help me sleep since it had no effect on my migraines. It hasn't been working the past couple of days, I'm wondering if when my pain gets too high it doesn't matter what I take to make me sleep, it just doesn't work. I take Tramadol for my pain, I couldn't find any help from OTC pain pills so that's what I was prescribed when my pains first started and it's what I've used since. You deserve to be medicated from pain, if aspirin isn't working, then I'd get a script from my doc if I were you. If you aren't in pain maybe you'll sleep better and then bargain you made will work out for the best!

 

[bozzylozzy]

Haha dahl - im a girl

 

[lsgs]

bozzy - Because I've been doing so well on pred until now I've not been off that much more than other folk in my work but as bosses go, he's been great tbh. Being self employed it's not in my interests to be off so they're a little more flexible that way, they're more strict with the employed people in my work who get sick pay. I'm glad the sulfa is working for you, do you think it's triggering the headaches?

Dahl - I think next time I'll man up and take the morphine. I'm wondering if I've built up a tolerance to dihydrocodeine because the co-codamol seemed to work better and it shouldn't be as effective. I'm a little better today but yesterday after I had my lunch at 12pm I was crippled till 10pm again. Then it woke me up at 1am, 3am, 4am and finally 7am. I'm supposed to be in work this afternoon after my GI appointment, should be interesting :O I hope your appointment goes well, keep us posted! Pred really has given me the best quality of life I have ever known until now but I think it's been overused and lost it's effectiveness. I hope they at least let you try it.

I am so ready for this GI today!

 

[Maree.]

Although it isn't a problem I've personally faced I have read that opioid tolerence does not prevent addiction. Which means although you are needing more and more of it to get ever reducing amounts of relief you can still be causing yourself issues with dependence. Which is one more reason to ask about alternatives if you find it's no longer helping to the extent it was in the past.

 

[lsgs]

I am literally the angriest person in the world right now. I am so done with this GI! He is denying my response to steroids saying my improvement has just been because of a 'feeling of wellbeing' caused by the prednisolone. Forget that it's taken my ESR from 51 to normal. Forget that I've gone from 12 BM's a day and nocturnal diarrhoea to pretty much normal.

So he is going to chase up the scan which he said doesn't think will show anything anyway. I asked him what I do in the meantime since 60mg dihydrocodeine and a 1g of paracetamol doesn't touch it, he said well if you need to get a doctor to come out for a shot of morphine then that's what you have to do!

He said it could be severe spasm of my bowel, so when I asked if my calprotectin would be high in spasm, he said no. He said my 3 high calprotectin results could have been false positives - how very convenient!

What has really pissed me off is denying the steroids have had any effect. Again it goes back to it being 'all in the head' and I am seriously annoyed. He is not the one who has seen what the steroids have done for me, they have given me a quality of life I never even knew was possible.

So annoyed.

 

[Cat-a-Tonic]

AAAh! I was writing a post and somehow it vanished! Okay, quick reply, take 2...

Gatheringroses, thanks for the link, I will try to download it tonight. I wouldn't take Aspirin though, NSAIDs can worsen stomach issues. Try either Tylenol (I know it doesn't work very well) or ask your doc for something that isn't an NSAID.

lsgs, I really hope the new GI takes you seriously, although it sounds like nothing could be worse than your current GI! That's so frustrating that he writes off all this evidence. Kick him to the curb for sure.

Bozzy, have you tried amitriptyline for the headaches? I got constant, chronic headaches when I was on Entocort, and Amitriptyline 25 mg stopped the headaches in their tracks.

Dahl, good luck at the GI today! Keep us posted on how it goes! Fingers crossed for you that it is worthwhile and productive!

How's everyone else? I had kind of a rough weekend. My arthritis has been killing me lately. I had a massage which only seemed to make things worse. Then yesterday I got a really nasty sinus headache. I also got a letter from my GP regarding the x-rays I had done last week in anticipation of my rheumy appt - as I feared, I have arthritis in both hips now. The letter says it's still mild and it didn't mention anything about my lower back. I've been having sharper pains in my lower back, although it could be referred hip pain. I don't know. I've been exercising so much, hoping that would stop my arthritis from spreading/worsening, but now I feel like that's all been in vain. I'm just depressed about this crap. I know you guys get it. Thanks for listening to my little vent.

 

[dahlfacepoet]

He everyone, I'm back from my GI appointment and she thinks she knows what I have. Dysautonomia, which is a disease that attacks the autonomic nervous system. She says there is nothing much she can do for me now, she she gave me a referral for acupuncture, to see if I get any relief from that. I'll probably have to go out of state to Colorado or Texas to get an official diagnosis.

I have more to comment, but my honey got in a car accident, so I'll talk to you later.

 

[bozzylozzy]

Oh no cat! Sorry to hear the arthritis has spread. Dont feel like the exercise has been in vain... it obviously seemed to help you feel good. And thats worth the work to me

@dahl - I havent heard of that condition before? Did she explain more about it? And do you need to see a neurologist or anything? Sorry to hear about the accident big hugs xx :hug:

@lsgs - im frustrated just reading about your GI! So can only imagine how frustrated you must be. But you have a eeferral in the pipeline for a 2nd opinion, dont you? Hopefully the new GI isnt such a :#7,#;@*-; hahaha xx


In regards to my headaches, i dont know if my meds are triggering it. I had a minor car accident in November last year.. and my headaches have been worse since then. So I fear it has made my chiari worse I get my brain/neck MRI results on wednesday when I see my neurosurgeon. So I guess ill find out if my chiari has progressed or not

@cat - I tried low dose amytriptiline last year and didnt do anything. Docs are trying 80mg of propranolol per day.. with option to increase when I have a review in 3wks. Then if that doesnt work, they will try a higher dose of amytriptiline xx

 

[dannysmom]

Isgs - I would be so angry too! I hope you find a new GI ... and I also cannot see how the lab result change and physical symptom changes can be dismissed!

 

[Maree.]

I hate the faulty test line too. We've experienced that argument with calproc tests too because Liam had one bad result (accompanying very severe abdominal pain) and then a normal one.

I've come across other cases on the forum of GI's talking about high calprotectin results possibly/probably being related to laboratory errors. I'm curious does anyone know if Calprotectin is a test that's particularly prone to laboratory errors?

 

[Alberta_sweetie]

I hate the faulty test line too. We've experienced that argument with calproc tests too because Liam had one bad result (accompanying very severe abdominal pain) and then a normal one.

I've come across other cases on the forum of GI's talking about high calprotectin results possibly/probably being related to laboratory errors. I'm curious does anyone know if Calprotectin is a test that's particularly prone to laboratory errors?

According to a friend of mine who is a lab tech, unless your tech is an idiot or the machine breaks down during the test the calprotectin test s not easily screwed up.

 

[Maree.]

Thanks in that case I'm going to continue to assume that there was inflamation present at the time the first test was done. Rather than accept the line that it was just a lab mistake.

 

[bozzylozzy]

Im not sure I have ever had that test before.. is it a stool sample? (I know they did samples when I was in hospital.. but never knew what for)

Dannysmom and maree - it must be so hard seeing your child so ill and dealing with the frustrations of not getting any answers
Its hard enough me being ill - but I dont know how I'd cope if my little girl was to go through this stuff too

 

[Maree.]

Yes it's a stool test, there is some information about it here: http://www.crohnsforum.com/wiki/Fecal-Calprotectin

My understanding is that it seems to be increasingly used as a test to monitor remission status in patients who have been diagnosed with Crohn's. As in some cases (this was the case with my niece) it can be used as an early indicator of flareups before there are any symptoms present.

For me although it's not nice to see Liam in pain I find I can cope with that, perhaps because pain is something I've had lots of experience with but I really struggle with his weight issue, when he losses weight even if there is an explanation (eg: current situation when he is on antibiotics) I still find that really frightening and distressing.

 

[bozzylozzy]

I can see why that would be more distressing. Where is he at with tests at the moment? Has he got any lined up?

 

[Maree.]

Currently Liam is on a PPI for acid reflux. His next appointment with his GI is in 6 weeks.

Given his 2nd Calprotectin test was normal and he had barium xray & colonoscopy which we're normally his GI is reluctant to run anymore tests at the moment.

Although Liam has had stomach pains and weight loss during the last couple of weeks I expect that won't influence that decision as he has had a foot infection and been on antibiotics, and pain & weight loss can be explained by that.

Given I'm feeling where at a dead end for now with the GI line. I think that given his BMI is now down to 14.0 which is beneath the 3rd percentile line his age, that my next step will be to see if we can get a referral to a pediatrican to discuss the issue of his weight & steps to take to get this back to a more acceptable level.

 

[Cat-a-Tonic]

Dahl, I'm sorry to hear about the car accident! Is everything okay?

Bozzy, a different dosage of amitriptyline might help. 25 mg prevents most of my migraines, but when my GI tried me on 40 mg, my migraines came right back. I'm not sure why but it seems like 25 mg is the ideal dose for me, anything stronger and it doesn't work as well! Go figure!

And yeah, I know the exercise has been helping me in a lot of ways. I just wish it helped my arthritis - I felt *so* good after going through physical therapy and I had pretty much zero arthritis pain for 2 years after finishing PT, and I was sure that was because I was continuing with exercise. It's frustrating because my guts are in remission, so then there shouldn't be any inflammation? So why are my joints getting worse? I'm so confused and frustrated about this. I will have a lot of questions when I do finally get to see the rheumy in 3 months!

 

[dahlfacepoet]

bozzy, It's a malfunction of the autonomic nervous system (involuntary stuff like digestion and regulating body temperature. It is an umbrella term for different type of my malfunction. It can be caused by an autoimmune disease. And I may have an underlying disease. GI thinks any more medication would just further poison me. So a new neuro wouldn't be of much help right now. I am not responding to any migraine meds. I'm on amitriptaline 50mg, it doesn't help with my migraines, but it helps me sleep, so that's why I'm still taking it.

Cat, Sorry to hear your arthritis spread. I have a lot of joint pain but not arthritis. It will be interesting to hear what your rheumy has to say.

The crash was okay, it was low speed but the other guy was on a scooter and wasn't wearing a helmet, so the ambulance came and everything. The police determined they were both at fault because scooter guy went around a big truck which is why my honey couldn't see him. He got a concussion and there was a lot of blood but he was stable as of last night. He should have been wearing a helmet. I'm just glad everyone is okay.

Dysautonomia wasn't even on my radar. And apparently there are only 4 other people in my state like me. It's rare so most doctor's don't think of it and it can be misdiagnosed as fibro or IBS depending on where it's failing. It's depressing because there is no treatment other than to manage symptoms, there is no remission possible or cure. I thought once I got a dx I would also get a treatment plan driving towards remission. I'm not sure what to think about all this information.

 

[lsgs]

Thank you all so much for your support :ghug:

Going to see new GI tonight so hopefully he will be open minded.

Also getting a little bit ratty with the other GI has worked because an MRI appointment has magically appeared for me! I have to go at the end of the month. I am so so so scared of getting the NJ tube. It's going to be awful

dahlfacepoet - I'm happy you have a diagnosis, do they have a plan at all for you?

Maree - are they doing anything for his weight loss, even if it's seeing a dietician or something? It frustrates me reading his story, honestly.

Bozzy - did you get your results then?

Cat - who's to say the exercise hasn't stopped it progressing further? If it's an inflammatory/autoimmune thing then exercise isn't going to stop it but it can help, that's the way I would think of it. I'm sorry to hear your x-ray results weren't good though

 

[Maree.]

Isgs Good luck with the appointment hope it goes well.

Took Liam in to see his GP today to get his foot infection checked, his GP had called in sick and the others we're overloaded with patients so Liam got pushed off to have his foot checked (a 5 min job) by the a pediatrician who was free because she'd had a cancellation.

IAfter a week on Augmentin he looks dreadful so it was probably the perfect time for her to see him. She ended up spending 90 min with him not 5. She gave him a full checkup, went through his file in detail and asked lots of questions. She ordered a batch more blood tests (waiting on insurance approval for those) referred him to a Dermatologist for his rash and to another GI for a second opinion.

 

[Cat-a-Tonic]

Maree, that sounds like a productive appointment! I hope the second opinion goes well.

Dahl, I haven't heard of dysautonomia either. There's really no treatment except for symptom control??? That's crazy and awful! Since it is so rare, maybe you could get into some medical trials for it or something like that? Hopefully a better treatment will come along soon. I remember when I told someone very wise about how I likely have IBD and that there's no cure, he told me, "You're young. Just because there is no cure now doesn't mean there won't be one within your lifetime." So keep that in mind, and hang in there.

lsgs, I know you're dreading the MRI, but hopefully it'll be worthwhile and you'll get some good results from it. For what it's worth, I've never had an NJ tube, but I did have to have an NG tube in for a full 24 hours during a test to check the severity of my acid reflux. I won't lie, it sucked, but I got through it. Part of the reason it sucked for me was because I have a screwed up nose (I broke it when I was a kid, and it was never set right, so it healed all wrong). My nose is so messed up that they literally could not get the NG tube in through my right nostril - the nurse kept trying to force it, and tears were pouring down my face, but it just wouldn't go. Finally she tried it in the left and fortunately it went in right away. So that was really the worst part of it for me! It was no picnic having it in for a full day either. But it doesn't sound like you'll have those issues like I did, so hopefully it'll be okay. Good luck!

How's everyone else? I actually had a good day yesterday - no arthritis pain! It had rained for a week solid prior to this and I so had a week of bad pain. It didn't rain and it was sunny all day yesterday so no pain. I even walked the dog yesterday with no pain, it was great. But today of course it's raining again and it's supposed to rain for the next 3 days so the pain has already started coming back. Blah!

 

[bozzylozzy]

@maree - That is so good she spent that time with you and your son.. did she mention anything about what could be wrong?

Lsgs - good luck tonight! I got my results.. he didnt compare this MRI to the last one.. so dont know if it progressed. He just said I have a severe chiari and significant symptoms. so he has offered the decompression surgery again. . And went through it in a bit more detail.

If I went ahead with it.. I would be in intensive care for a couple of days and spend about 10 days in total in hospital. Then at least 6-8wks before I return to work..
And because ive got a 2yr old... its an even harder decision to make. We would like another child at some point. So might go ahead before we want to add another child to our family

Argh! Lol

 

[Cat-a-Tonic]

Bozzy, it sounds like you're considering the surgery more seriously. I didn't know your chiari was considered severe, that's awful. Did they say, would your symptoms go away completely if you had the surgery? Will things progressively get worse if you don't have surgery?

 

[bozzylozzy]

I am considering it more.. and todays appointment made me feel a lot better about it. I dont like to read too much on the internet.. as people only write stuff when its really bad. Haha

I dont know what makes it severe.. but when I saw my mri scan image.. it looked like my cerebellum was sagging/seeping below the base of my skull. Like there was fluid above it (and it should be below it)
Also.. the brain stem should be sitting nice and rounded. But mine is molded to the edge of my brain compressed around it (this proves it was a congenital malformation)

I just dont know what I want to do conclusively yet xx


Edit: yes chiari can progress.. which I can tell mine has due to the symptoms being worse. I could develop a syrinx (pocket of fluid in spinal cord) which damages the cord and could lead to paralysis. (Worst case scenario) my val salva headaches could develop into drop attacks.. which can be linked to sudden death (very very rare)
The surgery is pretty mch 99% chance of eliminiating the headaches. But the other symptoms, he doesnt know. Because it is hit and miss.. so not enough evidence for there to be any clinical research into benefits of the surgery on soft neurological symptoms

 

[dahlfacepoet]

Maree, how is his foot doing? I'm glad she spent so much time with him, that sounds like she really wanted to help him. I hope her referrals turn out good for him and for you.

Cat, nope there is no treatment for it, it's technically not a disease, it's just a malfunction so there is nothing to fight. Apparently some people spontaneously get better, so that's some hope there too. I think there are more options out there, but it is so virtually unknown it means going to greater lengths to find treatment.

Isgs, the only plan so far is to try acupuncture, if that doesn't help, then I have to explore out of state for a definitive diagnosis. My GI only knows about dysautonomia because she trained with a team in Houston TX that specialized in the neurological disorder.

Bozzy, I hope you can find relief. Other than the time in hospital are there any other drawback you're worried about with the surgery?

This is a good link for dysautonomia http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm

 

[lsgs]

Hey guys, how is everyone?

 

[Cat-a-Tonic]

Hi lsgs, I'm okay. I have a GI appointment tomorrow at the brand new shiny "Digestive Health Center" in my city - it just opened up this month. Same GI, new clinic. I just had to switch from Asacol to Asacol HD so I have questions for him, but otherwise it'll be a pretty standard appointment.

How are you? Remind me, when is your MRE? Have you gotten an appointment with the new GI yet?

 

[Foxterier]

Hey guys
I am 24-year-old girl from Czech republic (Europe). I am really miserable since December 2012, I suffer from diarrhea, vomiting and strong abdominal pain, suspicion - CD. So far I was through colonoscopy and endoscopy with no result at all, I am just completely healthy. As long as insurance company refuses to pay for endoscopic capsule, I have to figure out a way to live through it all by myself (till the day a miracle happens and I meet a decent gastroenterologist). I am not taking any medications except from omeprazole and low doses of cannabis, that manages the worst pain. For a month now I can't force myself to eat anymore, I fainted and had a brain concussion, last two weeks feel so weak I have never felt before. My body is aparently missing vitamins and minerals I've never even heard of, I feel like slowly crumbling, piece by piece, so I came here to search for tips and advice...

I was quite okay to quit studying, social life and hiking because of this, but life is the only thing I just won't quit.

 

[Maree.]

If you look in the diet forum you'll find threads on EN products, these are shake style nutritonal supplements that are used by some Crohn's patients who need to put on weight (heavily used by parents with under weight kids). I believe it's possible to get your entire nutritional requirements from these products if your finding you can't eat.

I'm currently giving my son (also undiagnosed) 4 Ensure drinks per day to try to stabilise his weight and make sure he gets adequate nutrients. http://ensure.com/products/ensure-powder.

I know there are meant to be better EN products but we live in Middle East and I found Ensure was the most readily available (I could get in a chemist without a prescription) of the EN products here and the powder form is also reasonably priced $8 USD per tin, which does 7.5 serves. It might be worth checking at local chemists where you are to check what EN products are available where you live and which of them are reasonably priced.

 

[Sparkle2012]

Hi all; today I was informed that although my markers for Crohns are negative, my Prometheus test came back positive so after a year of tests and surgery and 4 months of Entacort, I have a diagnosis of Crohns. I feel fine - I don't seem to have any issues with foods but I do have some gerd, noisy intestines after my resection. I guess I will find a more pertinent group of Crohns diagnosed folks to hang out with! Have enjoyed conversing with you all! I need to figure out how to stay in remission so I am seeking out that group. Any suggestions forum monitors?

 

[Maree.]

Sparkle fantastic to hear you've finally got some answers. Hope remission lasts a really long time and you continue to feel good.

 

[Sparkle2012]

Thanks Maree

 

[Cat-a-Tonic]

Sparkle, congrats and condolences on the diagnosis. I've been in remission for 2 years myself (still undiagnosed, it's probably IBD but not sur which type). I got into remission by way of Entocort (7 months total - 3 months at 9 mg, 4 months at 6 mg). I've maintained my remission by being on Asacol. Unfortunately, regular Asacol was just discontinued by the manufacturer, so I was switched to Asacol HD and I don't like it very much. I see my GI in a couple hours and I'm going to ask him what my other options are.

Is the Entocort getting things under control for you? If not, you may need something stronger. The mesalamine drugs (Asacol, Lialda, Pentasa, etc) are good for maintaining remission if your illness was fairly mild to begin with - so what drugs you take for achieving & maintaining remission will be dependent on how severe your illness is. I'm guessing my illness must have been (& still be?) on the mild end of the spectrum, as both Entocort and Asacol are pretty mild medications, but I responded well to them. You mentioned already having a resection so I'm assuming your illness is more severe than mine! Your doctor will hopefully have some recommendations for you. I will say that Entocort is not for long-term use, it's more to get you into remission, then ideally you'd take something else to keep you in remission.

 

[Sparkle2012]

Hi Cat - thanks for taking time to pass on some info. My Crohns is classified as more significant than what it is, in my opinion. I had been experiencing issues for 40 years which lead to a surgery. I think it took many years to get that bad. But that is my uneducated opinion and maybe I'm in denial. I don't have diarrhea...just blockage issues with the strictures which are now gone. I took Entacort for 3 months after small bowel resection (minimal) and just made a positive on the Prometheus test today. I know some people seem to be doing well on Pentasa. I am hoping for that instead of the infusion medications. I'm torn about accepting any medicine while I'm feeling good. I have not experienced all the issues that come with Crohns. I guess I'll lean towards my doctors' advice but honestly the people on this forum have some good info to share. What supplements are you taking?

 

[bozzylozzy]

sparkle - im not surprised how you are feeling with the label of Crohn's.. must be very mixed up feeling. but, at least.. if your symptoms worsen at any point - the doctors will know what they are treating.

all the best for the future :hug: xxx

Hi Foxterier! sorry to hear you are having all these symptoms especially when you cant order the pill cam. are the doctors not willing to treat your symptoms without the diagnosis? xx

 

[Cat-a-Tonic]

Sparkle, I've been hit or miss with supplements. I tried taking probiotics but they make me feel terrible so I stopped. Same with Folic acid, it gave me horrible nausea. I was taking B12 for awhile but it didn't seem to do anything for me. I took biotin for awhile too for hair loss, it worked well but I stopped it recently to see if my hair will stop falling out by itself. I currently take vitamin D3, ginger (good for anti-nausea, can be constipating if you take too much), cranberry (good for preventing UTIs which I am prone to), calcium, and fish oil.

Oh, and I take psyllium husks too, one heaping tablespoon a day mixed into a glass of water. That's a soluble fiber supplement, good for bulking stools if you tend towards diarrhea - I wouldn't recommend it to you as it sounds like you're prone to strictures and don't get the big d anyway.

I would suggest getting your vitamin levels checked via blood work - that way you can have a better idea of what you should be supplementing.

 

[Sparkle2012]

You are the second person who mentioned hair loss. I have hair loss since Entacort. Why is your hair falling out? Will ask the doctor to test my vitamin levels. Great idea. I notice many are taking larger doses of D3. Do you know why that is?

 

[Cat-a-Tonic]

My hair started falling out when I started taking Entocort, so it seems to be a side effect of the medication. I'll tell you what I was told by someone else on the forum when it happened to me - Biotin (a B vitamin, I think it's B7?) may help. It doesn't work for everyone, but it's worth a shot. You need to take at least 3,000 mcg (that's micrograms, not milligrams) daily for it to effect hair loss. I was taking 5,000 mcg daily and that worked really well for me. Now that I've been off of Entocort for awhile, I stopped Biotin, and so far my hair isn't falling out, so in my case at least it was just an Entocort thing.

As for vit D3, many healthy people are deficient in it, and for IBD'ers it seems like the rate of deficiency is even higher. I don't know why that is, if it's an absorption thing or what. People in northern climates (like me) who don't see the sun very often are more susceptible to being D3 deficient, as sun on the skin causes the body to produce D3 naturally. So if you're out in the sun a fair amount, you are probably okay. But if you're indoors a lot or if you slather on sunscreen or stay in the shade or whatever, you might be deficient. D3 deficiency can affect mood and probably other things I'm forgetting. It's worth looking into to see where your levels are at. I see you're in Florida though so you may be okay.

 

[Sparkle2012]

Thanks, I'll let you know when I get my vitamin levels checked. I'm curious myself cause I have a ton of skin issues these last several years. Dry skin issues, peeling (which has turned into me scratching it all the time which doesn't help). I have rosacea but this dry skin thing isn't part of that I don't believe. I read somewhere that Crohns patients have "skin issues" but no one said what they are.

 

[Sparkle2012]

I just noticed you were in Wisconsin. Your cheese curds did me in once. I refer to 1) the pop corn issue 2) the cheese curd issue 3) the steak issue when talking about my history. LOL

 

[Cat-a-Tonic]

Sparkle, I feel for you, I'm lactose intolerant! I love love love cheese curds. I can sometimes get away with eating a few - but the fried cheese curds just kill me every time. I know to avoid those, but the fresh ones from the farmer's market are just irresistible. Pretty much everything about Wisconsin food does me in - I can't do dairy, beer, beef, bratwurst. I went to the State Fair a couple years ago and it was like, "Nope, can't eat that. Can't eat that either. Wow, that smells amazing, which means I definitely can't eat it!"

 

[Sparkle2012]

yep, strictures and a bag of curds...not a good experience. hahah If you can't eat at state fairs, you need to take special treats for yourself eh?

 

[Cat-a-Tonic]

Sparkle, yeah, I usually pack a couple Ensures or whatever supplement drinks I have on hand if I'm going somewhere with questionable food. Hubby and I went to the renaissance faire awhile back too, and I got written permission from the ren faire saying that it was okay for me to bring in my own food. They were really accommodating. They ended up having some things I could eat, but I liked having safe options with me too.

But seriously, I am getting hungry for cheese curds now. Drool!

 

[Sparkle2012]

I'm thinking those turkey legs might have been a player! I used to love the Rennaisance faire in So CAl....went to one in Charlotte, NC.....fun but nothing like the one in LA. They had it out in the desert hills at an awesome location...you had to walk thru fields and valleys to reach it, it was hilly and they had a section for "gypsy type things" that was in an area full of trees, shady and lovely. The first thing you could smell when walking to the area were the "Queen's Buns"....hot cinnamon rolls to start out your day. And the cheese and mushroom pies and artichokes were a big hit with me. Memories....

Oh and did I mention that the roving minstrels walked up to you and refused to stop their hideous playing until you put a donation into their hat? That was hilarious.

 

[Cat-a-Tonic]

Cheese and mushroom pies! That sounds so good. So not tummy-friendly, but so good.

There's only one ren faire around here and we have to drive a couple hours to get there. I've only been to the one so I don't know how it compares to others. It's okay - I like the falconer the best. Hubby likes this juggler/comedian guy the best. The big turkey legs are pretty awesome! Fortunately I can eat turkey. We went last year but didn't last long, it was super hot (like 95 degrees) and humid. High heat and humidity make my guts cramp up, and walking a lot also can cramp me up, so it was not a good combination. I recall being a bit miserable.

 

[Sparkle2012]

OH yes they are awesome. They make them with those little long handled pie makers----I liked them so well, I bought some and was making them at home. Really all they are would be a grilled cheese with mushrooms or onions but it looked cool in a pie form. haha I recall every year it gets too hot and I'm miserable. They really should plan it earlier in the year. The one in Charlotte was mostly shops and some "sit on the hay bales and watch some one on stage." The one in LA had a lot more cool things.....parades where they marched all thru the hills with the "queen" in a chair up over their heads....soak a bloke (with a giant sponge and oversized slingshot.....or drench a wench (same thing) and it was a great way for good looking single guys to meet dates. haha I took my younger brother and he had a blast. They tied a single person ribbon on his arm so he got some attention. They had the "gypsy camp" in the floral gardens and you could sit and get your fortune read, just cute things like that.

Well I've enjoyed chatting with you. I'm being ordered to go to bed now but someone pretending to be the Godfather. hahah My husband Ted has a nutty sense of humor. He goes to bed early because he gets up at 4am. So I pretend to go to bed and when he falls asleep, I'm out here playing computer games! haha Have a nice evening!

Carol

 

[SolisSpirit]

Hey guys.


I am undiagnosed, awaiting insurance. I have a few questions.


1. I have had diarhea for almost 10 years with no other symptom (obvious ones anyway). No pain. No bleeding (that I know of). No vomiting, or any other major symtom, except for one: eye inflammation. For the last two years I have had other symptoms now, one being steataorhea (fatty stools), fat loss (weight loss, but more specifically fat loss), and I'm unable to digest peas fully, some rice, and no corn. Does anyone else have similiar stories that turned out to be Crohns?

2. When I went to my doctor the first time, without having a diagnosis, he gave me Creon to take. Creon is a pancreatic enzyme to help you absorb foods, if you have a problem with enzymes in the first place. They didn't seem to help me at all, but has anyone else had a doctor to give them an enzyme to take before being diagnosed? I heard there was a slight connection with IBD and Exocerine Pancreatic Insufficiency. From what I understand though, EPI is mainly caused by alchohol abuse over many years, so I doubt that's the problem.

Thanks.

- Jay

 

[lsgs]

Hi lsgs, I'm okay. I have a GI appointment tomorrow at the brand new shiny "Digestive Health Center" in my city - it just opened up this month. Same GI, new clinic. I just had to switch from Asacol to Asacol HD so I have questions for him, but otherwise it'll be a pretty standard appointment.

How are you? Remind me, when is your MRE? Have you gotten an appointment with the new GI yet?

Have you noticed any difference switching drugs or have you been okay so far?

I had my appt with my new GI last week. He is suspicious of either mesenteric vasculitis or pancreatic insufficiency. He is going to trial me on pancreatic enzymes and see if it helps. Because I have sjogren's he thinks my pancreas might be 'dry'. I don't know though, I'm kind of losing hope. My husband said he wrote 'crohn's?' on his notes. But if he was suspicious of that I don't see why he wouldn't tell me. He was a little on the arrogant side and kept talking over us, asking questions was a no-no. Why is it so hard to find a GI with decent communication skills?

On the plus side a stern word with my other GI meant I got my MRE appointment within 2 days. So it's looking like they lost my original referral. It's scheduled for next Tuesday.

I don't know I'm kind of losing hope with the whole thing.

Hey guys.


I am undiagnosed, awaiting insurance. I have a few questions.


1. I have had diarhea for almost 10 years with no other symptom (obvious ones anyway). No pain. No bleeding (that I know of). No vomiting, or any other major symtom, except for one: eye inflammation. For the last two years I have had other symptoms now, one being steataorhea (fatty stools), fat loss (weight loss, but more specifically fat loss), and I'm unable to digest peas fully, some rice, and no corn. Does anyone else have similiar stories that turned out to be Crohns?

2. When I went to my doctor the first time, without having a diagnosis, he gave me Creon to take. Creon is a pancreatic enzyme to help you absorb foods, if you have a problem with enzymes in the first place. They didn't seem to help me at all, but has anyone else had a doctor to give them an enzyme to take before being diagnosed? I heard there was a slight connection with IBD and Exocerine Pancreatic Insufficiency. From what I understand though, EPI is mainly caused by alchohol abuse over many years, so I doubt that's the problem.

Thanks.

- Jay

I have just been to a GI who thinks I might have this due to an autoimmune condition called sjogren's. I'm due to start pancreatic enzymes as soon as my GP gets his letter.

 

[Sparkle2012]

Hey guys.


I am undiagnosed, awaiting insurance. I have a few questions.


1. I have had diarhea for almost 10 years with no other symptom (obvious ones anyway). No pain. No bleeding (that I know of). No vomiting, or any other major symtom, except for one: eye inflammation. For the last two years I have had other symptoms now, one being steataorhea (fatty stools), fat loss (weight loss, but more specifically fat loss), and I'm unable to digest peas fully, some rice, and no corn. Does anyone else have similiar stories that turned out to be Crohns?

2. When I went to my doctor the first time, without having a diagnosis, he gave me Creon to take. Creon is a pancreatic enzyme to help you absorb foods, if you have a problem with enzymes in the first place. They didn't seem to help me at all, but has anyone else had a doctor to give them an enzyme to take before being diagnosed? I heard there was a slight connection with IBD and Exocerine Pancreatic Insufficiency. From what I understand though, EPI is mainly caused by alchohol abuse over many years, so I doubt that's the problem.

Thanks.

- Jay

Solis - addressing your (1) those symptoms you describe are Crohns features: fatty stools, diarrhea, weight loss, unable to digest things with skins like peas and corn. I can not respond to your (2). Good luck to you!

 

[Cat-a-Tonic]

Hi Solis, welcome. There's someone who is not active on the forum anymore, but I remember Quirkysoul saying she was diagnosed with something that she needs to take pancreatic enzymes for. She's still active on facebook so I can ask her on there about it. She does not abuse alcohol to my knowledge so that didn't cause her illness. She has digestive issues too which apparently aren't directly related to her pancreatic issues, it may be Crohn's or it may be something else. Your issues sound really similar to hers! I'll try to get more info out of her on FB as to what she's been diagnosed with and how she's treating it.

lsgs, I actually had a really rough time switching from Asacol to Asacol HD. My main issue is, sometimes I would pass the Asacol tablets undigested. I just can't always break them down. It was okay though, as I was taking 6 Asacols a day, so even if I passed 1 or 2 every day, I was still absorbing more medicine than I was passing. But they stopped making Asacol in the US, so I had to switch to something else. My GI tried me on Asacol HD, but it just didn't work for me. The issue was, due to differences in dosage & pill size/strength, I was only taking 2 Asacol HDs every day. But I would still pass 1 or 2 pills undigested daily! So I was not really getting my medicine, and within 4 or 5 days of that I started feeling significantly worse, having diarrhea again, nausea, etc. My GI switched me to the new medication (the one meant to replace regular Asacol), it's called Delzicol. It's 6 pills a day just like Asacol was and it's supposed to be really similar to Asacol. I just started it today, so I'm not sure yet how it'll go, but I'm hopeful. It can't be worse than Asacol HD anyway, because I was literally just flushing my meds down the toilet with that one! So yeah, I know it's weird that I want to take more pills, but given my issues with not always being able to break down pills, this is my best bet.

 

[Gabi]

Hi everyone
Just thought I'd drop in and say hi. Things are hard at the minute for me in a lot of pain, I can't sleep or eat so getting very dehydrated. My doctor has me on high doses of pregablin/lyrica and amatriptaline and its doing nothing but making me fall over which is great for the joints. My GP rang my pain doctor and told him I'm not to be getting any narcotics as I have "mental" problems and that I have physical problem. However I got a discharge letter from my GI that said I have a "functional disease" does anyone know what this means? I'm down most of the time now. I have isolated myself so much so friends are few and far between plus anyone who I do speak to doesn't understand anyway!! Financially I'm doing terrible! I have an appointment with a colo retactal Surgon who apparently has taken an interest in my "case". I love how it now called my "case" I'm no longer a person I'm a pain. I'm the girl who has this problem and no one can see past it anymore, not even me. My doctor today asked me about my childhood and why it was so rocky and did I have pain then! I came home and cried my eyes out- how has me pooing blood got anything to do with my childhood!!!???
I'm almost going to give up. I've no idea what to do or how to help myself.

 

[Sparkle2012]

My God. These doctors are useless. I'm so sorry to hear stories like this. I would think functional means you are able to function i.e., work, no? Sounds like you need a fresh GI. I've had 3 so far. When they start acting stupid or insensitive, I move on. The male doctors are the worst! I get much better treatment from the male doctors when my husband is with me as though I am then validated. Seriously. Hope you decide to look for a better GI and don't give them any family background to use on you due to their inability to diagnose and treat you properly, eh?

 

[Gabi]

I thought functional ment like there was a problem with the functioning of the bowel? I'm not working or functioning normally so I hope that's not what it means! I would hate to see the karma that is coming back to some of these doctors...scares me to be honest.

 

[Sparkle2012]

Could it mean it's a disease still active...functional...? There is nothing functional about Crohns...stupid term....if that is what they meant. I just discovered you are from Ireland....do you have the ability to move to another (better) doctor or ..maybe not with the socialized medicine?

 

[Cat-a-Tonic]

Gabi, I think when they say "functional problem", they mean IBS or something along those lines. They're giving you the brush-off. And asking you about your childhood?? That's just weird and wrong. I hope the surgeon can do something for you because this is getting ridiculous! I hate hearing about doctors ignoring or mistreating someone who is clearly in pain. This is so wrong, I wish I could do something to help. You need some new doctors because these ones clearly do not take you seriously! And please go to A&E if the dehydration gets worse or doesn't get better - at the very least they can give you fluids, and they may be able to help more.

Big hugs, hun. I hope things somehow turn around soon!

 

[Sparkle2012]

Gabi, I think when they say "functional problem", they mean IBS or something along those lines. They're giving you the brush-off. And asking you about your childhood?? That's just weird and wrong. I hope the surgeon can do something for you because this is getting ridiculous! I hate hearing about doctors ignoring or mistreating someone who is clearly in pain. This is so wrong, I wish I could do something to help. You need some new doctors because these ones clearly do not take you seriously! And please go to A&E if the dehydration gets worse or doesn't get better - at the very least they can give you fluids, and they may be able to help more.

Big hugs, hun. I hope things somehow turn around soon!

As in... an issue that is not functioning properly....that makes more sense.

 

[Gabi]

Thanks for the replies. Yes I'm in Ireland by if I change my GP will this not be considered doctor shopping? I over analyse everything I do and say now-the system has me paranoid. I'm not a junkie I have no addictions and need had-I don't even drink for gods sake! They have got me all wrong. Anyone who knows me is horrified that they would be so rude. The doctor even asked me was I working on the side aka cash in hand! I wish I was fit for that!! I don't even qualify for benefits or Disability as there is "nothing" wrong with me. Total separate subject but just proves doctors don't know it all an aunt of mine was told by her GP she had arthritis and she then took a clot in her leg which lead to a brain haemorrhage and a stroke-now she's in hospital recovering. I don't know how these doctors sleep on their beds at night. And the horrible thing is I'm not alone- we all are going through this! My GI says its crohns but he can't find it therefore no drugs to help it basically just get on with it!

 

[lsgs]

I thought functional ment like there was a problem with the functioning of the bowel? I'm not working or functioning normally so I hope that's not what it means! I would hate to see the karma that is coming back to some of these doctors...scares me to be honest.

Gabi I'm so sorry for what you're going through. It's probably of no comfort to you but I've also had the what happened in your childhood line, even as a very sick inpatient. When they can't figure it out the easiest thing to do is blame it on the patient. Most recently I've been told my response to steroids is pretty much all in my head despite my blood results and FCPs supporting my reduction in symptoms. GI's are just a nightmare

Functional basically means IBS btw. Which is pretty much another buzzword for 'I don't know what's wrong'.

It's an absolute disgrace you should have to worry about where you're going to get pain relief. Makes me so angry.

 

[bozzylozzy]

Hugs to you gabi.. im so sorry to hear that things still aren't going well. I hate the fact your doctors make you look like a narcotics addict to other medical professionals. . So frustrating!!!!

My rheumatology nurse said something interesting the other day.. I was upset about having to see a different rheumatologist in july.. and she said that the other doctor treats patients without diagnosis.. because auto immune problems can take a long time to manifest fully.
She said that many doctors there, monitor patients for a long time - to give the body time to show what is actually wrong. You can start with symptoms but it might be several years before blood tests reveal what is actually wrong.

Not that we want to have an AI illness.. but a diagnosis is easier to treat than playing guessing games.


@cat - how have your new meds been settling?
Hope everyone is doing ok xx

 

[Maree.]

Lyrica is a nerve pain drug. If you've got nerve damage it can be absolute magic, but I found the side effects awful too. My understanding is that it's so specific to neural pain that it's effectiveness or not is used as a diagnostic indicator as to nature of pain.

It's not a drug that builds up in your system, it clears the body totally with in 24 hours. So it's effectiveness doesn't increase with time. If it's going to work for you it should work straight away. If it's not working I'd say it's the wrong drug for you.

Hang in there Gabi, I know it's hard when your in pain all the time.

I'd start by replacing the GP. I really don't see how psychoanalysis as any role in Pain Management, it doesn't play a role in CBT which is all about thought management techniques not digging into the past.

 

[Sparkle2012]

I would not worry about "doctor shopping." I would worry about getting good care eh? Being a physician should not give them the right to condescend, insult and run commentary on your personal life. I can not believe some of these comments particularly the one about cash on the side thing. My comment to him: "Are you fkg kidding me?" My ex-GI#1 said to me "I'm sorry... you have Crohns. If you would rather not take medicine, there is a diet for Crohns but judging your current body habitus, I'd say it is not for you." Translation: you are overweight and have no self discipline. He's also the one who wanted to put me on Humira without any further tests such as the "Crohns Test" that was given to me by GI#2 and the Prometheus, amongst many others. I have a female GI now...she's not considered an expert in Crohns but there is one in her group, a man, who was rude to me when my husband was not present. I call him GI#2. So my GI#3 has access to discussion with him and that's good enough for me for now. She's not an Axxhole. She listens and is pleasant and is very smart. I'm not going to give my business to an undeserving uncaring physician. These doctors forget they are getting high $$ to treat us, eh?
Hope you feel better soon!

 

[Cat-a-Tonic]

Bozzy, thanks for asking. New meds haven't settled me yet, I hope they do soon. I miss Asacol! I've been having d for days now, including this morning, and I've had nausea off and on. You know me though, I'm still working out every day without fail, and that's been keeping me feeling okay-ish. I am sure I'd feel a lot worse if I weren't in the gym all the time.

Gabi, I can't add much more than what the others have already said. Sending you another big hug and hoping that better days are on their way.

 

[Sparkle2012]

Bozzy, thanks for asking. New meds haven't settled me yet, I hope they do soon. I miss Asacol! I've been having d for days now, including this morning, and I've had nausea off and on. You know me though, I'm still working out every day without fail, and that's been keeping me feeling okay-ish. I am sure I'd feel a lot worse if I weren't in the gym all the time.

Cat: Besides the obvious health benefits, how does exercise contribute to Crohns improvement? You sound like you are exercising all the time!! You must be really toned and healthy aside from your chronic issues.

 

[Maree.]

I know the question was addressed to Cat but I'll throw in two things points for exercise: Pain Reducation (endorphine release & reduced secondary deconditioning, which causes additional pain), Improved Sleep (physical tiredness override pain & produces healthier sleep).

My pain management clinic pushed exercise really hard, my 3 week fulltime pain management clinic had two hours of exercise per day & their view was for chronic pain sufferers should be aiming for at least an hour a day of exercise.

 

[Cat-a-Tonic]

Sparkle, I'm not sure if there is a direct effect on IBD, but there are lots of indirect benefits of exercise on my illnesses. I kept my arthritis in check for 2 years with just exercise. Working out regularly can help with digestion (like taking a walk after a meal). It can also help ease stress and depression - I don't get deeply depressed anymore, I might feel sad for a day or so during a rough time, but it's nothing like what it was before. And I handle stress so much better now and generally feel happier. And with IBD, if you're losing weight uncontrollably, you're likely losing muscle mass - you lose muscle mass when you're on steroids like pred/Entocort too (they actually rob muscle mass, corticosteroids are pretty much the opposite of anabolic steroids in that regard) so I've been building my muscle mass back up. Weight bearing exercise is great for the bones too, and I know I'm losing calcium from being on so many reflux meds. There are a ton of great benefits.

Really though, I like the feeling I get when I work out. I feel normal and healthy - I can forget for a little while that I'm sick. I also feel like a warrior, like I'm physically battling my illnesses and pushing my body towards health. Those feelings are what keeps me going. I work out every day, and I am getting toned, but I don't look super fit or anything. I like food too and can't eat very healthy, so I still have a bit of cellulite on my thighs and a bit of a flabby belly (thanks, Entocort). My goal was never to look good though so I don't mind too much. I do have some nice toned arms and my booty/hips area is looking nice so I'm getting there. The inside is what's important though, not what the outside looks like.

 

[Cat-a-Tonic]

Sparkle, if you're interested, here's a link to my thread about exercise.
http://www.crohnsforum.com/showthread.php?t=47421

 

[Gculk]

To Gabi :

A 'functional' disorder is considered a disorder in which the body systems (biochemistry, serology, physiology) are working as intended, but causing discomfort nonetheless. For example, someone who has a longer than average bowel transit time, causing discomfort and constipation, might be diagnosed with IBS - Constipation, while a person with low transit time might be diagnosed with IBS- diarrheah.

However, your symptoms, given the disruption of sleep patterns, eating patterns, and dehydration very much indicate a non-functional cause. That is, something's really fucked up, and not just mixed up. Hopefully you can figure something else out. New doctor would be advised, that one seems an arse.

Sparkle/Cat- Exercise also acts to decrease inflammation in the body. I don't know if an exact mechanism has been proposed for this effect, but I would guess that since exercise works to build muscle by re-building damaged tissue then hormones/chemicals for signalling tissue regeneration are released after exercise, and this leads to some healing of the damage of the inflammatory site. Otherwise, it might be an inhibitor of the inflammatory response in order to prevent your slightly damaged muscles from becoming inflamed and scarred in response to exercise.

As for me, Finished up my school year a week or two ago, got a good full time job for the summer, might have a second one coming down the pipe, working with the chemistry department as well, doing more course developent. Would be busy, but the money would be lovely.

Also getting out rock climbing tomorrow. Thank god. I've been a sloth.

I was feeling so decent until recently. Normal aches and pains of ridiculous hours pounding out the study, but perfectly normal. Was waiting up for my appt with GI on the 18th. It got pushed ahead to May for whatever reason, such is life.

Well, earlier this week my stomach had a rumble, a tiny pinch. Ehh, probably ate something.

The next day I get a sore throat - wait no, it's a sore in my throat. Yep, little thing probably 4mm across, white little ulcer. Stomach still bugging me a bit.

The next day, I get that familiar feeling of sandpaper getting run along sores in the morning before work. Go to the bathroom. Well, hell - blood/mucus/bloody mucus in my stool.

Hasn't given up since, pinchy pains, burny pains, ulcer is still there probably 4 days later in my throat (little apthous thing). Also frustrates me that I had these sores before, but because they were always on my lip, I assumed that I'd just bit my lip - I'm a clutz like that. Nope. I doubt even I could have bitten the flap of skin just before my tonsil. So, I missed giving docs possibly useful info.

Well, I guess the evidence is piling a little high now, the timing is just a little too perfect for it to be unrelated, and mouth ulcers aren't really a symptom of IBS.

Maybe something will finally get done!

Best to ya all,

Nathan

 

[lsgs]

Gculk, where are you at with testing etc?

 

[Gculk]

Had a first GI/GP that thought IBS. Small bowel followthrough - negative, though part of my ileum wasn't clearly imaged. Sigmoid - Negative. Colonoscopy - Negative, but some lymphoid hyperplasia of the terminal ileum. CT-Scan - Negative. ESR/CRP/CBC/ANA - Always normal. H-Pylori - Negative.

New GP thought IBD when I first saw her, but doubted after more negative bloods. Asked for second opinion GI, she said sure. Go to new GI in May.

Hopefully that wasn't too abridged.

Today my ulcer is almost gone! =] Down to about 2mm across. But my joints are aching and my gut burning.

 

[Tatahead]

I really don't want to be sick, no one wants to be, but being sick and always getting the "unspecified" diagnosis is worse. You have all of the same symptoms, on all of the same medications but everyone thinks you should be going to a shrink instead of a specialist. At least that is what I find in my case.

 

[Sparkle2012]

Cat and GCulk: Thanks for the information. Cat: I will read your link and digest. I have been doing yoga and treadmill this week and there is a noticeable difference in the way my chest feels, my core, my energy level, and my joints. I have not exercised in 10 years since I remarried and put on 40 lbs. I've changed my diet to healthy choices....the weight will come down. I lost 20 lbs (pre-Entacort steroids) very quickly earlier in the year without realizing that my healthy eating was having a great impact....I'm trying to recreate the scenario that brought that about. The steroids blew any hope of eating well out the window - I was ravenous for sweets and pastries. Seems like smallish meals throughout the day does it - reduced my volume needs...focused on all healthy high protein. For sure I'm keeping with the execise. I'm 63 and am starting cautiously. I have a bad knee from an aerobics injury years ago. My knee blows up with too much activity. Yoga has given me immediately improved range of motion. Thanks again all! Hugs.

 

[Maree.]

Saw Liam's new GI today, will write more about how it went later (tired now). But thought I'd mention he was very sceptical about the idea that a high fecal calproc test, followed by a low one (3 months later) mean't 1st result was a lab error.

He said it's a test where it's normal to see a lot of fluctuation, depending on the state of inflamation at the time it's taken. So much more like explanation is that both test results we're accurate and reflect that the inflamation settled down during the time in between.

 

[lsgs]

Saw Liam's new GI today, will write more about how it went later (tired now). But thought I'd mention he was very sceptical about the idea that a high fecal calproc test, followed by a low one (3 months later) mean't 1st result was a lab error.

He said it's a test where it's normal to see a lot of fluctuation, depending on the state of inflamation at the time it's taken. So much more like explanation is that both test results we're accurate and reflect that the inflamation settled down during the time in between.

Maree I'm really interested to hear more about this visit, as you know I'm having similar issues with my GI! My 3rd and most recent FCP is high again so I'm curious to know how he's going to pass it off as a false positive this time.

How is Liam's foot?