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I did some dumb things today. I drank starbucks this morning and had a cheeseburger for lunch. I barely ever eat them anymore, and was feeling dangerous. Well it was dangerous, because my stomach is blah tonight. Oh well, it was good at the time! I took a bentyl and it helped some. I will take another one in an hour before bed. It just numbs the stomach and I don't feel pressure from gas.

Jessie - Hang in there. Hope you get your test results soon. I hate waiting for test results.

Cat - Make me a moogle costume! j/k :p

mccindy - That's about as much exercise as I got today too (the walking, didn't go hunting:). I did grocery shopping though, which is something.

Hopefully next week will be good. I'm going to try half an immodium in the morning. I just want one "somewhat" normal day.
 
Cat, glad you felt better after the gym and were able to walk your dog! Hope you get a great sleep tonight :)

Technology is amazing isn't it! I hope it won't take 14 hours either but you never know. I noticed I am supposed to drink the 1L of go lightly at 5:30 am when my appointment is 7:30. That doesn't seem enough time. I feel like I will take some dulcolax too the night before because my body isn't that responsive to laxatives in the short term and I have had to use them a lot and i have to take more than recommended usually.

In my small bowel follow through it took almost 4 hours for the barium to reach my large bowel, so I assume liquid moves faster so it will probably take the 8 but who knows!

Moogle, sorry your stomach is blah. Hopefully tomorrow and next week are better. I definitely understand the wanting to feel normal for a day!! Tomorrow is Canadian Thanksgiving and we are having a big family get together and everyone is bringing lots of food. I want to eat a lot but I'm scared to get sick :( I am going to take a double dose of my motileum and a zofran before I start eating and hope that will do the trick!!

I also hate waiting for test results!!! Especially when they tell you less than 2 weeks and now it's been 3!! Usually they over estimate... (Like say it will be 3 weeks but then it's actually 2)
 
Jessie - Out of curiosity, how did they administer the gastric emptying exam? What kind of food was it? How long did it last?

I wasn't satisfied with my exam. They only gave me a bowl of oatmeal (with added fiber). Then I laid down for 45 minutes under the x-ray. I heard it's supposed to be low fiber like eggs and toast, and lasts for 3-4 hours.

How is the motilieum working for you? I used to take it for the gp and it helped a lot.

I'm going to ask my doctor about SIBO testing because it's common for gastroparesis. Interestingly enough, I have heard that part of the treatment for SIBO is prokenetic drugs like Motiliem to restore normal motility (which flushes out the bacteria in the gut). So it may still be helpful for me.
 
Moogle, I had to eat scrambled eggs and 2 pieces of toast in like 5 minutes? Forget the time but it was 5 or 10 I think. Then they did an initial scan for about 15 min, and then at the hour, 2 hour and 3 hour mark. They would have done a 4 hour scan too but I had <10% remaining at 3 hours so they said I was done. I was impressed because I'm from a small area so I wasn't sure if they would be doing the "real accurate" test or not. Yours doesn't sound very accurate. I have heard of 2 hour tests but never of 45 min.

The motileum I think helps a little bit, but not very much. I had a few days which were kind of better and I thought the motileum was making its effect but then most days since have been not great so I don't know...

I would also like to ask about sibo testing with this out of province doctor, because we don't have the testing available in my province. I have wondered if that was part of my problem for awhile but my GI thought with my constipation it was unlikely.
 
Jessie - That's good you had the test for 3-4 hours. I feel jipped haha. I want my money back! :p

Check out this website. Crystal Saltrelli is a certified nutritionist and has gastroparesis. Even if you aren't diagnosed with it, maybe she can still give you good tips for coping with your symptoms. http://livingwithgastroparesis.com/
 
Thank you Moogle, I have seen that site and her videos. She seems really helpful. I will buy her book if I am diagnosed. I don't blame you for being annoyed with your test, it doesn't seem like that would be accurate. How much did it cost you? I am Canadian so my test was covered.
 
Wow Moogle, that is insane. I am so grateful I don't have to pay for all my tests I'm having. (besides paying my taxes obviously, but not paying direct medical costs) Especially when it was seemingly not a very accurate version of the test.
 
Moogle, would they not let you set up a payment plan? Also, you can apply for financial aid through the hospital. I pay $50 a month on my doctor bills because that's about all I can afford, and in the past I've been approved for financial aid even though I did not get anywhere close to meeting the criteria. They said I had to be something like 500% below the poverty line - I'm above the poverty line, not by a lot, but even so I got approved and they wiped out the $6000 or so in medical debt that I had racked up.

Jessie, I hope you get your test results back soon! When you have the pill cam, be prepared to wait awhile for those results too. When I had mine, I was initially told it takes about a week for the results. 10ish days went by and I had heard nothing, so I called to see if the results were in. The nurse I spoke to said, "Who told you it takes a week? It takes more like a month for pill cam results!" I think it ended up taking about 3 weeks. I'm not sure if it takes longer in Canada - and a lot of it depends on how busy your doctor is as they have to look at all of the tens of thousands of images, and that obviously can take some time.
 
The worst part is waiting for me... two weeks feels like for-ever. I don't want to talk to anybody, I think I'm experiencing a flare so bad I'm ready to just dose myself with prednisone... my life is on hold when I'm in pain and I hate playing catch up. I'm currently having a pity party and trying to be dori and keep swimming. Blech... Sorry for the boo-whoing...
 
PiratePantaloons, I seem to recall that you were on pred in the recent past, correct? Did that do anything for your guts? Did your symptoms get worse once you were off it? I had an experience like that, I was on a trial of pred and it made me feel great, but I felt much worse than before once I finished the trial and came off of it. Does your doctor know how bad your symptoms are right now? Sounds like a wicked flare (and no need to apologize for the pity party, we all need to throw pity parties from time to time!). Obviously it's not wise to take pred without your doctor knowing, so hopefully you can get your GI or even your GP to prescribe a longer run of pred for you. Good luck and hang in there, and keep us posted on how you're doing. *Hugs!*
 
Cat - The tests I had were a few years ago. If I have any major tests again, I'll look into a payment plan.

How are you doing today? I'm ok I guess. I'm kinda tired this afternoon. I just took a short nap.
 
Moogle, I'm so-so. Feeling fairly tired, my bad hip hurts, no nausea though, but I had quite a bit of reflux going on this morning which seems to have calmed down now. Hopefully it stays calm during my workout this evening! I had a lovely rest day yesterday, barely moved off the couch and didn't do anything productive. So you would think I'd feel more rested today since I rested so much yesterday, but nope - I'm right back to feeling vaguely exhausted and crappy. I think it has to be the steroids. I'm seeming to have the complete opposite side effects from when I was on pred. On pred, I had a ridiculous amount of energy, I felt happy and great, no pain and no symptoms. On the steroid injections, I feel exhausted and blah and in pain and nauseous and definitely worse than I felt before getting the injections. Ugh! It never even occurred to me that the injections would be vastly different somehow from oral prednisone. Sorry for the vent, I'm having a Monday I guess. :p
 
Hi everyone how are you all doing? Sorry I've not been on, really not feeling great atm, tum hurts bad and I feel like my joints are about to explode :(. I have been reading the thread though, Privatepantaloons can Ijoin your pity party please :). Cat sorry your having hip pain I know it's not much fun, I've had both steroid tablets and injections (3 for my wrist) the tablets gave me amazing relief of my joint pain, first time in years with no pain but my tum didn't feel much better until the third week but both did crazy things to my blood glucose control so steroids are now on my"as a last resort list". Hope you feel better soon.

Thinking about you all...has anyone heard from Gabi?
 
Moogle, that sucks about your belly. I'm bored with eating lately... eating the same thing all the time gets old. Sometimes I'm tempted to just eat the heck out of something I crave, but I know I will pay for it for so many days, I just can't do it. :( I hope you're feeling better.
Cat, the upside- your Monday is almost over! Then it'll be Tuesday, Ihope it's a good one for you.
 
Still no sign of gastro appt even though my gp sent an urgent referral over 3 week ago. God bless the NHS?

Irony being when I saw this doc privately he would call back within minutes for the smallest question, very attentive. I am hoping in classic nhs style it has gone to some 'referral management centre' and it's not just that the gastro is not interested now there is no longer profit to be made...
 
Isgs, how frustrating! Can you call them and harass them, or are you stuck just waiting?

I checked on my prescription for the Linzess yesterday, but they are STILL waiting for prior auth again from the insurance company. I just don't get it, I did their stupid prescription they wanted me to try first, which of course didn't work. I may have to call and get all uproarious with them. seriously!
 
I have not heard from Gabi - has anyone else? I hope she's okay! Gabi, if you see this, please update us when you are able to!

lsgs, I'm with Cindy, call them and see what the hold-up is. When my GP was referring me to rheumatology, apparently my GP's nurse "lost" the referral somehow. A few weeks went by and I heard nothing, so I called to see what was going on, and that's when my GP realized that the referral had been lost. He had to re-write me a new referral - so I'm glad I called, or I might still be waiting! :p

Cindy, that's crazy that the prescription still hasn't gone through yet! I like your idea, get on the phone, ask for a manager, and ask them what's going on! It's ridiculous that you've had to wait so long and are still waiting.
 
My problem is I kind of don't want to set off on the wrong foot with the GI, I've not seen him on the NHS and I don't want to be a pain before our first appointment. My GP sent the referral electronically so it's not like it could get lost, and my GP said that himself, so I don't know what's going on. My GP will re-refer me if it's needed, but I don't see him again till Monday.

Had like the worst pain today and couldn't go into work, came on all of a sudden with horrific nausea and had to run to the bathroom to pass mucus and blood. Quite scary :(

Got my MRI of my spine and pelvis tomorrow, so depending on whether it comes back positive or not it could cement my IBD diagnosis.

Cindy you've been waiting forever for that med! For all I moan about the NHS I'm glad we don't work an insurance scheme like that. Our system has a lot of problems but I've never been told you need to be approved for meds! Are they particularly expensive or something?
 
lsgs, a lot of meds here in the US are very pricey (particularly the name-brand drugs that don't yet have a generic equivalent) - I just googled, and someone on the internet said Linzess costs about $900 a month without insurance. So yeah, Cindy needs her insurance to approve it as almost nobody can afford that much money for one medication!

Entocort is similar, over $1000 a month without insurance. Pentasa would be about $500 a month without insurance, and I have heard that Remicade can cost over $4000 per infusion without insurance. So yeah, this stuff can be ridiculously pricey! With my insurance, I end up paying $75 a month for most brand-name prescription drugs (including Pentasa, Asacol, Entocort). $75 isn't cheap either, but at least it's less than my mortgage payment. :p I know that people here in the US who don't have insurance will tend to opt for pred over Entocort, as pred is very cheap (when I was taking it, I was paying $10 a month - I'm not sure how much it costs without insurance). And there are some discounts - I've heard there's a program where most people can get Humira for $5 per injection (I have no idea how much it normally costs). But overall, medications can be really expensive here and you have very limited options if you don't have insurance!
 
McCindy, you should get Rambo on their @$$! You've waited too long for the Linzess. Have you had a chance to try the Natural Calm? While you're waiting, maybe you can give it a try and see if it helps?

Oh and I can't wait to purchase health insurance! :p Just another thing to add to my bills now. Hopefully one day I'll get good job with benefits!

I had a very good thing happen to me today. I'm not allowed to say what it is. Let's just say someone working for a lab testing company is being very very generous to me. I'm feeling very hopeful and grateful right now. :)
 
Moogle, whatever the good thing is - I hope it's truly beneficial and worthwhile and nothing you can get in trouble for! As for health insurance, if you're low-income (no income?) then you should theoretically either be able to get something like Medicaid or a whole lot of subsidies to help offset the cost of paying for insurance. That's what I've heard the talking heads say anyway - not sure how the new Obamacare system actually will work, if it's truly going to be affordable or not. I've heard so many conflicting stories, and I know most of what's said on the internet probably isn't true anyway, so I really have no idea!
 
It's nothing I'd get in trouble for. The person working for a lab company is sending me a test for free. She didn't want me to tell people. Technically I am telling haha, but I'm leaving the person and company anonymous because I don't want her to get in trouble. :)
 
Appointment with GI
I've been told I'm not starting stronger steriods or immunosuppressants until I get another colonoscopy to see the inflammation even though my white cell scan showed up where my inflammation is and the current meds aren't working. I've also been told my morning blood hormone levels are abnormal and that they think I have Addison's disease too. Remember folks autoimmune diseases don't come on there own they bring their friends. So 4th colonoscopy in a year. Personally I think he's prolonging the agony. I apparently have some other autoimmune disease thing called Porphyria along with crohns and Addison's which he didn't go In to detail about Infact just passed the buck to some professor in endocrinology God only knows when I will see him!!
I can tell you guys honestly I cried myself to sleep and am still crying today.
I want all this to end.
I'm so sick of being sick.
I don't even know if my crohns diagnosis is still here he said it was very vague.
I apologise for not being on much and I hope you all understand.
 
Jeez Gabi I don't know what to say other than at least they are (slowly) figuring it out and you have treatment in your future. I don't know much about it but I've read here that Addison's can mimic crohn's so perhaps when you have that treated your guts might improve?
 
Gabi, how awful. I hope you get some resolution soon. I can't believe those docs don't have a sense of urgency for you, seeing as much pain and suffering you are going through! I'm mad for you and wish I could yell at them for you.
Moogle, pumped for you that you've had some help from a friend. Doesn't that just give your whole outlook on life a bump when people are willing to help you?
I haven't tried the Natural Calm yet because I haven't been able to find it here in our town. WE may be going through the Twin Cities next weekend and I'll check there to see if I can find it, or (just thought of this) maybe look online!
With the expense of the medication, and the fact that it is a "new" drug on the market, insurance companies are resistant to paying for them. I will be nice when I call today (so busy at work yesterday I never had time) but I really want to ask them how they would feel if they couldn't eat, had belly pain everyday and only went to the bathroom every 2-3 days! It's kind of funny they are fighting it so hard when they've already paid out over $100,000 for my medical expenses so far this year. They haven't batted an eye at any of the previous expenses.
 
Hey guys wondered if you had any words of wisdom for me about this bizarre problem.

Over the past week I've developed a niggling pain my left shoulder, right at the tip. Very vague, can't pin down where it's coming from in my shoulder exactly. I can move my arm fine, I can lift things, it doesn't appear arm related if that makes sense. What does bring it on is breathing, yawning, laughing, coughing etc. The worst thing I can do is bend over say to pick something off the floor, then the pain just shoots right through my shoulder. Also if I push on my tummy it brings on the pain in my shoulder?

It's getting worse and worse and I've been having an unusual amount of nausea too, but nothing out of the ordinary otherwise.

I know it's a weird one. I'm not due to see my GP to Monday but I'm not sure I can wait, it's difficult to sleep with it.
 
Gabi, lsgs is correct, Addison's can mimic Crohn's-like symptoms (diarrhea, nausea, etc). It's a fairly rare disease - I would ask the doctor what specifically causes him to think that you have it. I was tested for it myself and I seem to recall that about 1 in every 100,000 people have Addison's, so that's only 10 out of every 1 million people - quite rare! (In comparison, things like Crohn's & colitis are MUCH more common). And Porphyria is very rare too, I would definitely ask how they came to the conclusion that you have it. I didn't know much about it so I googled. It does sound like it can also mimic Crohn's like symptoms (nausea, abdo pain, etc) - so if you do indeed have Addison's AND Porphyria, then it's possible those illnesses are causing your gastro type symptoms. That sounds really implausible to have both of those though as they are so rare, it would be very odd to have 2 rare illnesses like that! Definitely get more info out of your doctors - what tests have they done, and what specifically were the results that pointed them to this conclusion?

Here's some info on Porphyria that I found. Sounds to me like they're thinking you have the "acute" form of it as that seems to be the one that causes gastro symptoms.
http://en.wikipedia.org/wiki/Porphyria

lsgs - this may sound odd, but try taking some antacids or reflux meds and see if that helps your shoulder pain at all. I sometimes get weird sharp pains, usually in my left ribcage but it can radiate up into my left shoulderblade or the left shoulder itself - I didn't know what it was for the longest time, and it would get worse with certain movements or if I'd lie on my left side, so it sounds similar to what you're experiencing. And one day, on a whim I took some antacids when that pain came along - and the pain went away as soon as I had taken the antacids! So it seems it must be related to my reflux somehow, referred heartburn pain maybe? Anyway, try taking something like Tums, Ranitidine, whatever your go-to is for reflux, and see if that helps. If it is reflux then you should get pretty quick relief from treating it. Good luck and keep me posted on whether or not that works for you!

Cindy, I'm not sure what's in that "natural calm" stuff, but have you tried peppermint? It has calming properties on the digestive tract and might at least tide you over until you can get the Linzess. If you have GERD, though, you're not supposed to do any mint (mint relaxes the entire digestive tract, including the valve between stomach & esophagus, so it can allow more reflux to come up if you are prone to refluxing). Let us know what the insurance company says! Good luck!

Oh, and Cindy, I forgot to ask - how did the MRI go? And when do you get the results?

How's everyone else today? I'm pretty good. I've been sleeping SO well since I put my electric blanket on the bed - I seem to need to be as warm as possible when I sleep, if I'm at all cold then I'm restless and wake up or just don't seem to get very good quality sleep. So I've cranked the electric blanket the past couple of nights, to the point where I wake up kind of sweaty (not as bad as night sweats though), but it's made a huge difference in how well I'm sleeping. So I don't care if I sweat, I'm finally sleeping! It's been awhile! :)
 
I took some ranitidine and another lansoprazole (I take one of them everyday anyway) but no luck so far. Dihydrocodeine doesn't touch and it's pretty goddamn painful right now.
 
Isgs, the abdomen and the shoulder are linked, ligament-wise. Often after abdominal surgery, there can be pain in the inner shoulder at the top of the chest, just under the collar bone. This is because when they inflate the abdomen so they can look around in there, it pulls on those ligaments. What you're experiencing could possibly be related to something abdominal if you're bloated or having some issues. If it does continue to get worse, I'd head in to urgent care just to make sure it's not something too serious, especially if it's bothering you that much.
Cat- peppermint is tough for me because I really don't like it. :p especially since my surgery in July, if I don't like the taste of something, I can't even put it in my mouth. Still haven't been able to get ahold of the insurance company, I may try the Gi's office just to make sure they did the prior auth stuff as requested.

The MRI went okay after I took my sleepy meds! :D But I'm still waiting to find out the results. :( They have received all the information (I called this morning) so I'm just waiting for the doc to call me.
 
lsgs could be some form of gas. I know from placements we are told to look out for shoulder pain in patients that have had any surgery as it can be trapped gas from the surgery. it should resolve itself but it can be painful.
 
Cindy and Akiva, I didn't know that about the shoulder & gut being connected like that, but that makes a lot of sense - thanks for the info! So when I take antacids and it helps my rib/shoulder pain, is that maybe just because the antacids are helping reduce my bloat? Or do you guys know if reflux itself could cause pain like that too? For me it usually only happens on my left side, and I sleep on my left side - so I wasn't sure if I was aspirating refluxate into my left lung while sleeping or something along those lines. I'm sure my lungs would still hurt even after taking antacids if that was the case, though.
 
its to do with the gas rising. I guess that any bloating or reflux could cause it on its own. ive never actually experienced it, although I have nursed patients with it, in the wards we give peppermint tea and pain relief
 
Akiva, does the peppermint tea seem to help most of your patients? I ask because I have severe GERD and I was told to avoid mint - it can relax the valve that's between the stomach & esophagus, which can then cause more reflux. I have noticed that when I do drink peppermint tea, I feel much more refluxy immediately afterwards. I like peppermint tea, but I know I shouldn't have it because of my GERD. And so if reflux is causing my shoulder pain, I imagine peppermint tea might make it even worse? Maybe that's just me though?
 
tbh its very hit and miss, a lot of the time it depends on the op they've had and other problems they've got. I HATE peppermint tea, it makes me really refluxxy too, and its disgusting IMO.

I don't think itll be a good idea for you.
 
Hey guys, pain got insanely bad so went to out of hours service. I have biliary colic. Got an injection to settle it down for now and gp will be arranging ultrasound.

The doc had a really long chat with me about LDN too and said he really thinks it would work for me. Definitely going to be looking into it.

It is amazing how much pain the human body can produce.
 
lsgs - hope you feel better soon. I've never had gallbladder pain. I've heard it can be terrible pain.

akiva - I agree about peppermint tea. I don't like it either, yuck. I've heard ginger tea is supposed to be helpful for the stomach, but I don't like that either. I can do a little chamomile tea though.

Cat - I suggest Natural Calm to McCindy for the C. It's just a natural magnesium citrate supplement that you drink with water. There's a really long post about it here on the Inspire forum. Seems like it helps a lot of people.
http://www.inspire.com/groups/agmd-.../there-is-a-magic-bullet-for-colonic-inertia/

Glad you're getting some sleep Cat! Sleep is a good thing. :)

I'm doing ok today. The weather here is wonderful here. I can still wear shorts and a tshirt.

My mom is having terrible IBS-C. It's mostly because she takes about a dozen different pills. It's been 7 days in a row now she hasn't had a bm. I'm seeing if she can try suppositories or something else tomorrow. Tonight I made her a cup of Natural Calm. For some reason if she eats raw carrots, it makes her go. So I sliced one up for her with some ranch dressing. If she isn't better tomorrow she may need to get help at the er.
 
Cat - I know you follow my caring bridge, so I'm sure you've seen my latest update. The good news for everyone else, is that my MRI was clear, no tumor regrowth! Very happy about that. I will need to go back in 6 months for the next one. Dr. decided to stretch it 6 months because of no growth yet, and she wants me to come to her in Rochester for the next one and if I wait til April, I won't have to drive down there in the snow and cold of MN winter (it's about a three-hour drive). I can't come off the Keppra (anti-seizure meds) because she feels I'm still "high risk" for seizures. I'll have to wait until April to talk about weaning that too. Also, she bluntly told me to remember that my cancer is not cured - there are still tumor cells in there that will grow. Not a matter of if they will grow, but when. She told to expect that when that growth happens (could be a year, could be several) I will need to have radiation to treat.


One more positive - I called the GI's office yesterday and told them the pharmacy told me they still needed a prior authorization for the Linzess -she was pretty mad, because they never got in touch to tell her that. She said she would resubmit it to the insurance company for the prior auth immediately, and put it in as "urgent" status. Basically she said, "you've had to wait way too long for a medication that was prescribed back in August." I agree! Here's hoping the auth comes through quickly!
 
Also Cat-regarding the reflux. Your shoulder pain, I'd guess is deferred pain from your esophagus. Have you ever done that lovely thing where you burp and hiccup at the same time? When they meet in the middle, the pain spreads across your chest? This is because the muscles are trying to work in two directions at once (the esophagus is a long tube of muscle). When the energy meets where the muscles are working in opposite directions, the energy and movement is deferred outward through the chest. This can also affect those shoulder muscles and ligaments. Kind of like that scens in The Matrix where the chopper hits the building, and in slow-mo you see the energy ripple across the front of the glass - then it just explodes outward. :eek2:
 
Moogle33 said:
lsgs - hope you feel better soon. I've never had gallbladder pain. I've heard it can be terrible pain.
Click to expand...

I can absolutely confirm that gallbladder pain is pretty horrendous! The abdo pain is gone today but the shoulder pain is still there, just a little though, not nearly as bad.

Mccindy that sounds like great news on both fronts! I can't believe you've waited since August for a med, that's not right at all!
 
Thanks Cindy, that's interesting! I do those burp-hiccup (feels like a hiccup that gets stuck?) things all the time. I feel refluxy after they happen so I presumed they were related to my reflux somehow. I don't necessarily seem to get the shoulder/rib pain right after the weird hiccup thing happens, but I'll keep a closer eye on it the next time it does happen.

Cindy, I'm glad the MRI was clear, and that's also good news about not having to drive in the snow for your next MRI. That's really scary though about it not being an "if" but a "when" as far as the cells growing back. I hope that they don't grow back until you're like 106 years old - but whenever they do grow back, I hope the radiation works wonders. Could radiation by itself potentially blitz all the bad cells and effectively "cure" you?

lsgs, that sucks about your gallbladder causing your pain, but at least it was a quick diagnosis! It sounds like the injection gave you some relief too, that's very good. LDN sounds promising too - I don't know much about it, only that it's still not considered a "mainstream" IBD med but that it seems like it helps a lot of people on the forum. If you get to try it, I'll be very interested to hear how it goes!

Moogle, I hope your mother got some relief from the carrots. How's it going with finding an assisted living place? And how are you doing lately? Glad to hear you're having good weather - it's in the 40s/50s here lately and rainy, it's getting chilly! Definitely jacket weather - I wore my wool coat this morning, brr!
 
the radiation will potentially stop or slow the growth of any tumor cells - the main problem is, as I recently learned, the sheer number of cells that can be involved in a tumor. There are literally tens of billions of brain cells in a gram of brain tissue, so even when 99% of them are removed, that still leaves tens of millions. Then, when radiation is used, and if it say, kills or stops growth in 99% of the remaining cells, that 1% can still contain millions more cells, all of which are active and can still grow into new tumor. Boo! So, the slower this thing grows back, the better for me, and when it does, the better response I have to radiation, the better for me also. It's unlikely that it will be "Cured" as the doc tells me, but it is possible to have a temporary remission. Sometimes a remission can last for a long time. So it is possible I could have many years yet, just depending on how long regrowth takes. There are several new studies with some positive news about fighting astrocytomas like I have, so maybe by the time my tumor does start to grow back, one of those will have proven to be a cure of some type. There is always hope! I plan to be hanging around for years and years, lurking on this forum. ;)
 
Hey Cat - My mom is better. This morning I had her drink another cup of natural calm, she took 3 colace pills, I fixed her a sweet potato and some lima beans. Then I had her take a 10 minute walk (it was the most she could bare). Then she sipped on a hot cup of green tea. Bingo, she had a bm! Now she is out of depends and begins a new drama...

Me, I'm really out of it today. I am not sleeping well. I had too much coffee, just wanting extra energy and it is backfiring. blah.

No luck with the nursing homes. I have to wait until Medicaid approves my mother before she can afford assisted living. Her income is not much and we can't sell the house until she is in a care home. Ugh, I am depressed and need a beer or something. :angry-banghead:
 
Cindy, wow, I didn't know there were that many brain cells in a gram - what an odd thing to think about! (For some reason, reminds me of an old joke I heard by Emo Philips - "I used to think the brain is the most interesting organ in the body. Then I realized, look what's telling me that!") remission sounds good, I hope both the brain and the tummy can get into remission so that you can be reasonably healthy for a good long while!

Ha ha, I'm going to hold you to that thing about lurking on the forum forever. ;) I've worked my way up to supermoderator so you know I'm not going anywhere!

Moogle, do you drink a lot of coffee? I can't have it at all, the caffeine gives me migraines and the coffee itself gives me d (not sure if that's the heat or the caffeine or a combo or what - back when I was a coffee drinker, I'd get fancy coffees that probably had a lot of milk in them so I'm sure that was a contributing factor too). I can't drink beer either! :( Well, I never really liked beer anyway so no big loss there. I can have a small glass of white wine every so often, and at rare times I'll also mix a bit of soju (South Korean rice-based alcohol) in with a glass of orange juice. I think the OJ is worse on my system than the soju is! Too acidic for my poor refluxy tummy to handle.

Goodness, that sounds so stressful with Medicaid and nursing homes and selling the house and everything. Where will you go once it's all settled, will you then be able to get an apartment and a job and all that good stuff?
 
Cat - I think I'm self medicating with the coffee. I used to drink a lot of coffee and tea, and I have cut down to one cup of instant in the morning and that's it. But the last two days, I splurged and had some at a coffee shop. I probably won't do that again for a while. It's too strong. It makes me feel good for a little while, like I actually have energy. But it makes me crash so bad. I don't usually drink beer. I quit drinking alcohol regularly because it does upset the stomach. I just realllllly want one right now, haha.

I want to move back to Atlanta when it's all settled with my mom and the house. There's a lot more jobs there and I have some friends there too. Hopefully it'll be easier if I have some money from selling the house. I want to have a simple life. Maybe at first find a roommate and an apartment with cheap rent until I get a full time job and steady income. It would be so nice to have a pet (preferably a cat). :)
 
Cats are the best. :) I think I've talked about this already, but my cat is like the perfect pet for a sick girl. She follows me to the bathroom, and she'll just sit at my feet and purr when I'm on the toilet - that's so nice and comforting. And if I'm not feeling well, she seems to know, and she'll sit near me and will keep an eye on me. She'll come when I call her, and she'll meow to me as if to say, "I'm coming!" She'll meow in the mornings to greet me too when I first wake up - she knows to meet me in the bathroom first thing in the morning. :) She's just the best.

Oh, and Moogle, if you do get a cat someday - try to get a black cat, if you can. Apparently black cats don't get adopted out as often and get euthanized more than any other color cat. Here's an article about it:
http://abcnews.go.com/Technology/Am...ck-dogs-cats-animal-shelters/story?id=8785177
As a black cat owner (my dog is mainly black too), I can say that black cats are awesome! :D

How's everyone doing today? I'm okay - had a bunch of d the other day and the guts still aren't quie back to normal. Hubby made dinner the other night (creamy pasta w/ ground turkey) and I'm not sure if it had too much dairy in it or if the fat content was too much for me to handle or what, but it did not do good things for me. Other than that, I had my flu shot so my arm is a little bit sore, but otherwise I'm feeling pretty well. How's everyone else? Anybody have weekend plans? I'm going to visit my grandparents and I'm going to work on our Halloween costumes, and I hope to get a pumpkin or two to carve too.
 
Moogle, I hope that things settle down for you soon! It sounds like you are really struggling with all that's going on for both you and your mom. Ugh. I used to wish I liked coffee, it smells so good and those who drink it really seem to enjoy it. But now I've rediscovered Chai Tea Latte (with soymilk) so I'm indulging in that every day. Takes the place of coffee for me and the spices in are supposed to be really good for both the GI tract and even the brain. Although, they are supposed to stimulate both metabolism and appetite and I haven't experience any increase in appetite, still having atough time eating much. :( Dropped a couple of pounds because of it.

Cat - you made me laugh out loud in my office! That was pretty funny. I feel fairly calm about my brain cancer, I think because knowing what's going on, even if it's not the best news, makes me feel empowered. I know I'm good to go for the next six months and what the future holds for me, that gives a sense of calm. Now if my belly would just calm down! I've upset it again, turns out that I can't eat grapes. I hadn't eaten them all summer but decided to try them because they were on the "ok" list the doc gave me. Well, turns out that they are not. Boo! So my belly has been unhappy for a couple of days. :( Hope your hip is feeling better!
 
Im doing pretty well atm. Had bad news today, I failed my portfolio for second year. Ill probably pass it second time but still a bit guttered. Got my first shift in months tomorrow. Its on a ward ive never been on before. I start at 7 so I dont know when to take my pred. I usually take it at 8-9am but that won't be physically possible. Should I take at 6am or 10am on break? X
 
Akiva, I was always told to take pred first thing in the morning - as it tends to give you energy, if you take it right away first thing, then some of that energy will have burned off by bedtime so that you can hopefully sleep okay. So, I would take it at 6 AM. If you wait till 10 AM, you might still be feeling a bit too wired at bedtime.

Cindy, the hip is so-so. It's overcast but not actually raining, so the hip is a little bit iffy but not bad. I'm tempted to try jogging on it for a few minutes when I hit the gym this afternoon. If jogging goes badly then I know I'll be in pain for a few days, but I can rest up somewhat on Saturday, so it won't be super terrible. I'm guessing jogging will probably still be too painful for me to do, but I'm hoping the steroid shot did *something* to help in that regard. Maybe I'm wayyy too optimistic, but I guess it'd be good to know either way if I can jog now or not.
 
Hey guys! Another apology for being so rubbish :(
If im absolutely honest.. im knackered and very worn out. Im starting to worry about my apprenticeship. I dont think my body can cope working full time (with not much sitting down) my knees and joints feel awful. Plus.. ive noticed my memory is really bad too. And im panicking. When somebody is telling me something new.. ill understand what they're saying... but then I instantly forget.

Mccindy - that is great news that they MRI gave good news.. and that you can avoid the snow for your next visit :)

Lsgs - that sucks about the gallbladder pain :( how are you feeling now? What meds did they give to settle it?

Akiva - I agree with cat about the pred.. it definitely made me feel wired and interrupted my sleep. So 6am would be better :) what work do you do?

Cat - how are you? Have you still seen no improvement with the steroid injection?
 
Bozzy, is there any way you can go part-time or be able to sit more? Maybe if you brought in a doctor's note saying you have joint pain and you need to be able to site more? As for the memory issues, can you record or write down what's said so that you'll remember it later?

No, I have not had any improvement with the steroid injections. I think I'm finally over the worst of the side effects, so I'm feeling back to about the way I was feeling before the injections. My hip still has pains, I swear it seems like more pain than usual but that could be because it's getting colder out and my hip doesn't like cold weather. The nausea is thankfully gone, and the fatigue is gone too. I'm still having some d, but I was having d before the injections too. My acid reflux has settled back down to where it usually is (not great but not insane - it was pretty insane for awhile after the steroid injections). So, I'm back to about my baseline. I'm functional and I'm okay - I'm not great, but I'm pretty good.
 
Ii do write things down when they tell me stuff.. but when I read it back.. my mind goes blank, like my brain isnt processing what im reading? :-/ meep. I dont really want to say anything just yet, because im so new... I get paranoid really easily about what people think of me :( its so pathetic I know lol.

Well.. congrats to getting back to baseline! Haha :p
What did the rheumy think about how your joints responded to the injections? X
 
You need more confidence, Bozzy! We'll all be your cheerleaders if you want. You can do it Bozzy! You're awesome, go Bozzy go! :D

And no, my rheumy is a worthless idiot and I am not going back to him. When I had emailed him saying that I was having bad side effects and no relief and worse hip pain after the injections, his response was basically, "I don't know why that's happening, that's not normal, maybe follow-up with your GP." That's the 2nd time he's tried to pass the buck and get me to go to my GP - unacceptable! The rheumy is the freaking specialist and should know how to help me, my GP is great but he isn't going to know what's going on. So I am not going to have any more contact with that rheumy again, I'm done with him. If the hip pain gets worse over the winter then I'll see if my GP can refer me to a different rheumy or if he has any other ideas. I've already done physical therapy and I've seen a orthopedic surgeon (who was also worthless), and now I've tried steroid injections, so I guess worst-case scenario, I could try going back to physical therapy as that was the one thing that really did help. Or I suppose I could try acupuncture as Moogle suggested awhile back, although I'm guessing acupuncture isn't covered by insurance. Or I could just deal with it and learn to walk with my fancy cane. :p Okay, that's not a good option! But it's probably still a better option than going back to that worthless stupid rheumy.
 
akiva, so sorry to hear your news. Sounds like you're feeling a bit overwhelmed. Try to take some deep breaths (and your pred first thing in the morning ;) ). I hope things get better for you.

Cat, take care with the hip. Hopefully it works out for you. My back has been pretty miserable the last couple days too, I'm sure the damp weather is not helping. remember to take some time to relax!
 
bozzy, take some deep breaths. Clear your mind a bit. It sounds like you are very stressed, and stress can have some very detrimental effects on the memory. I have memory problems anyway, but I find that when I'm stressed they get much worse. I'm hoping you start feeling a bit better, and find some workarounds for work that help with your pain.
You can do it! Rah! (I'm joining Cat's cheerleader squad!)
 
Thanks guys! :)

Cat - I would definitely seek a 2nd opinion... I cant believe he would fob you off as easily as that!? Now THAT is pathetic haha. I dont like the sound of acupuncture myself... im such a wimp haha. But I know a few people who rate it. :) plus I had a mini needle on my wrist to help with post op nausea... and that certainly worked!

Cindy - you are so right.. I am stressing. Bleurgh. Sometimes my mind just gets tied up in knots with it! X
 
Yeah, that rheumy was totally pathetic. :p He was so promising when I first saw him - I told him my symptoms and that I seem to have IBD and so I think I have arthritis that's related to the IBD and I just need to know what type of arthritis and how to go about treating it or preventing it from worsening. He said, it sounds like inflammatory arthritis, and let's do an MRI to confirm. He was so sure that it was inflammatory arthritis that I think he just didn't have any other ideas whatsoever when the MRI came back normal (that was the first time he tried to send me back to follow-up with my GP). I decided to make a follow-up rheumy appt to try to get more info about the MRI and see if he had any other thoughts, what I should do from here, other tests, etc. His only idea was to do the steroid injection, which I thought had a good chance of helping, so I was on board with the idea. But when that didn't work, again, he was out of ideas and tried to shuffle me back to my GP! Ugh. So I guess he'd be a really good doctor if everything went his way. :p Unfortunately my body doesn't comply well with tests and it likes to have side effects so that made his job difficult, and apparently he could not deal with that. I need to find a new rheumy who is more forward-thinking when it comes to "tricky cases" like mine (My GI always says I'm a "tricky case" but at least he hasn't given up on me nor sent me back to my GP!).

Okay, random question, but does anyone else go through Tums/antacids ridiculously quickly? I swear I buy a new bottle of Tums every 1 to 2 weeks. I just bought this current bottle recently and it's already almost empty - I was still thinking of it as my "new" bottle of Tums but I guess I need to buy another one already! I need to take about 8 Tums if I'm going to the little gym and about 10 Tums if I'm going to the big gym (the big gym has more machines so I'm working out longer and the reflux hits me harder). I need to take 3 or 4 if I'm doing yoga, and I take 5 or 6 if I'm riding my bike. My bottle says it contains 60 Tums, so that's about 6 to 8 workouts' worth, depending on what I'm doing. I swear, though, I seem to go through them even faster than that lately! It's crazy! Maybe it's just because my reflux was worse than usual during the steroid injection side effects episode? Maybe that's it.
 
Hey bozzy! Don't worry about not being on, you need to take care of yourself!! If you have something autoimmune it's really common to get brain fog, have you ever heard of it? I certainly feel a lot less switched on than I was in my younger days! As Cindy says the more you stress about it the worse it will be too!

The pain in my shoulder has never gone away and varies in severity. It's aggravated by eating and things like laughing, sneezing, coughing, bending over. When I press under my ribs my shoulder hurts, it is the most bizarre thing I have ever experienced. They gave me a diclofenac injection in my bum which settled it down for a about 24 hours but tonight it is back full force!

So fed up tonight :(
 
i find rennie, gaviscon etc just touch me when I get refluxxy aciddy feeling.

bozzylozzy - im a student nurse, but I work as a health care assistant at my local hospital as and when, its ok, but it means constantly being the new girl and not knowing where things are
 
Cat - I'm not 100% sure, but my acupuncturist said some insurance covers it. It's worth checking out. You may want to try Prelief if you can find it. It's not an antacid you take after a meal, but you take it before to neutralize the acid. http://www.akpharma.com/prelief/preliefindex.html

I agree with mccindy about stress. I've been feeling the stress a lot and I am super gassy today. I also find that when I'm stressed, I eat more unhealthy because I don't feel like cooking. So it's like a vicious cycle.

Today I went to two assisted living homes. One was a small house and another was a big nursing home. Things are actually coming together. I learned more about medicaid today, and my mom and uncle probably can get financial assistance.
 
Moogle, you sound better today! Glad to hear that your spirits seem to be up, at least. :)

Cat, have you tried Prilosec or one of those other meds that are meant to keep reflux from getting so bad? My son has had reflux for years and takes a daily med for it that seems to work pretty well. I can find out what it is if you'd like.

Isgs, you must be feeling so annoyed by that shoulder! That can be frustrating, when you just don't know why it's happening and nothing seems to make it better. I hope it either goes away for you or they figure out what it is and how to fix it!
 
Cindy, yeah, I've tried & failed prilosec. I was on 20 mg, which worked great for awhile, then slowly lost effectiveness. So then I went up to 40 mg, same story. Now I'm on Nexium 40 mg. I'm taking it once a day which works so-so. I had tried taking Nexium twice a day per my GI's suggestion, but that made my digestive system's pH drop so low that I could no longer break down my Asacol. I'm on Pentasa now so maybe it'd be different, although I believe that one also requires a certain pH to break down. So yeah, one Nexium first thing in the morning, 300 mg Zantac plus 10ish Tums before a workout, and another Zantac before bed. That's been my system for awhile and it works okay most of the time. It's not great - I still definitely experience some reflux particularly while working out. And it's not even so much the acid that's a problem, it's the reflux - I can reflux up plain water during a workout, it doesn't burn like acid but it screws with my stomach and makes me prone to nausea/makes me feel like vomiting may be imminent. It's not fun! I know I could opt for surgery - I could have a Nissen fundoplication to fix my hiatal hernia and hopefully stop all the reflux, but there are scary-sounding potential complications of that surgery so I'm not in any rush to get cut open. (Massive bloating, inability to belch and inability to vomit are 3 of the undesirable-sounding side effects of the surgery - I hate to vomit, but sometimes you have to, and not being able to belch sounds pretty wretched!)

I see my GI in like 2 weeks. I'm not sure if Pentasa is doing much for me. Has anyone on here tried Apriso? That's like the one 5-ASA drug that I haven't tried yet. I don't know if it would work for me or if I should give Pentasa more time (I've been on it for a little over a month, and the steroid shots largely screwed me up during that time). What would you guys do, give Pentasa more time or ask to try Apriso?
 
Hey, everyone! My insurance company finally approved the Linzess! yay! And it only took two and a half months.... sheesh. The pharmacy here doesn't carry it so they have to order it in, I should be able to start taking it tomorrow! (Now here's hoping it works!)
 
Yay Cindy!! :D I hope it works wonderfully and that there are no more snags so that you can indeed start taking it tomorrow. Keep us posted!

And ugh, isn't that annoying when your pharmacy doesn't carry your prescription? I use nuvaring for birth control, and I swear my pharmacy never has it in stock and always has to special-order it! I cannot be the only person in this city who uses nuvaring, and it's a major chain pharmacy so you'd think they could get their act together and keep it in stock. They don't carry Prepopik either so they had to rush special order it so that I'd have it in time when I did colonoscopy prep a couple months ago! Hmph, so annoying.
 
:( been having a rough day. Been great for the past few weeks but today ive been really sore and ive gone to the loo loads only just got out been in there over an hour. Got my consultant appointment in 9 days. Not sure how its gonna go.
Glad your insurance is finally playing
 
Cat-- Have you ever tried DGL for your refllux? It's a supplement, and I find it helpful. With the severity of your reflux, you'd probably need to take your meds as well, but it might be a helpful addition. (I also have a hiatal hernia, though reflux isn't a big issue for me. It does come up-- literally-- when I stop taking the DGL though.)

mccindy-- Glad your medicine was approved! Good luck!

About a month ago, I saw a Chinese herbalist and started some herbs. My GI tract has still not recovered. Once I get back to some semblance of my baseline, I'm going to try Gastrocrom (for the Mastocytic Enterocolitis).
 
Thanks Chickadee, I haven't heard of DGL but I'll look into it. Sorry to hear that the herbs did a number on you - I feel for you, those steroid injections I had made me feel icky for weeks too. And now I feel like I'm coming down with a cold, so once again I'm fatigued and my guts are a mess. (My guts always act up with d, nausea, etc when I get a cold/virus - not quite sure why.) Bleh, not fun! Good luck with the Gastrocrom, I hope it has the opposite effect of those herbs!

Akiva, good luck with your appointment! Keep us posted on how it goes. I hope it's worthwhile. Hope you feel better soon too. Hugs!
 
Cat-- Oddly enough, I was having severe neck pain last week and got several trigger point injections (mix of lidocaine and steroids), and this helped tremendously (just with my neck, not my intestines). I had only had one steroid injection before, which had neither helped nor hurt, so I was a little nervous after reading about your experience. Thankfully, my experience was positive this time. I'm sorry you're sick. I have the same issue whenever I'm sick with another illness-- it seems to trigger GI issues. Maybe because the immune system becomes upregulated? (That's assuming our GI issues are autoimmune.)
 
Cat - I'm feeling blah myself too. I don't have a cold yet, but it's dreary here and getting chilly. I've been sneezing some today and I feel fatigued. Do you get a flu shot? I'm not this year. Last year I got really sick after I got the shot. I was sick for weeks.

Cindy - Yay! Finally got the prescription. That reminds me, I need to get my mother's meds refilled tomorrow.....Sorry random thought there. But I needed to remember that. :)

Akiva - Sorry you're not feeling good today. Hang in there! Hope you feel better soon.

Chickadee - I'm glad your shot helped. I've never had to have steroids for pain thankfully. Pain management is so important though!

I got my SIBO test in the mail today! I need to restrict my diet tomorrow to plain baked chicken, or fish. I can only have white bread or white rice and plain broth. Then I fast overnight before I do the breath test. Then I mail it back and hopefully get results in a week.

If it's positive then I'm going to my doctor and request antibiotics for treatment. I'll see if they have any samples of Rifaximin. I can't afford that brand for prescription, so my second option is erythromycin. Even that is like $50 for one prescription.
 
Chickadee said:
Moogle-- Your breath test sounds really different from one the one I had. I had to go to a hospital (outpatient). I was given a fluid to drink that contained lactulose, and then every 20 mins or so, a nurse had me blow into a little bag. That went on for 2-3 hours. Mine was positive.

Have you checked to see if you might be able to get Xifaxin through one of these programs?
https://www.pparx.org/
http://www.needymeds.org/drug_list.taf?_function=name&name=Xifaxan 550&gname=rifaximin&coupon=1
Click to expand...

I had the same test. It seemed pretty unreliable :S

Congrats on getting the linzess mccindy :) Really hope it works for you!
 
Chickadee - It's the same test basically. There is not any hospitals or clinics anywhere close to me that does the testing. The lab company that makes the breath tests do at home testing. I will drink the fluid with sugar and breath into the bag every 20 minutes for a few hours. I just mail it back to the lab for results. The only difference is that I'm using glucose instead of lactulose. I'd need my doctor to write a presecription for lactulose. I happened to get this for free so I'm going with the glucose.

lsgs - It isn't 100% accurate, but I've seen more and more credible sources acknowledging SIBO as a real condition linked to IBS, IBD, gastroparesis, and so many other conditions that I just want to give it a shot.

Dr. Pimental kind of pioneered the treatment behind SIBO. His protocol for treatment is antibiotics, then a low residue diet to keep the bacteria from coming back. He also puts patients on a promotility drug like domperidone or Erythromycin for a short period like six months.

That's what I find so interesting because my main symptoms are sluggish motility. His theory is that a lot of people who get IBS often have had a viral infection, possibly food poisoning. Somehow the patients have had altered motility from nerve function in the gut. If normal peristalsis is altered, it allows the bacteria to grow in the small intestine. So treatment is a multi-step process, not just antibiotics. :)
 
Chickadee, yeah, it definitely seems to be somehow related to my immune system. Ever since I first developed these gut issues 4 years ago, I always get worse gut symptoms whenever I get a cold/virus. When this cold first came on, I assumed it was allergies, as for the first day or two my sinuses were all wonky but my guts were initially fine and normal. Then the guts started playing up and I knew it must be a cold! I don't know if it's autoimmune or not - I know there's some debate as to whether stuff like Crohn's is an AI illness or not - but it's definitely got some correlation to my immune system.

Moogle, yes, I had my flu shot a week ago. I get one every year - people with chronic illnesses are always encouraged to get the flu shot, as it's much safer for us to get the shot than it would be to get the flu. I know the shot is usually something like 70% effective, so sometimes I do get the flu anyway - but they say that if you've had the shot, that if you do get the flu, your symptoms should be less severe and last for a shorter duration. That is totally true in my experience - I got the flu about 3 years ago, and it only lasted maybe 2 or 3 days tops, with the worst of the symptoms only lasting maybe 12ish hours. Not bad at all, and I've never had a bad experience with the shot, so I'm happy to get it every year.

This cold is still hanging around. Bleh, I was so nauseous this morning I had to take 2 Zofran just to be able to drink my breakfast smoothie. Feeling super fatigued now and still having mucusy d too. Fun times. :p
 
I'll reconsider the flu shot. Last year I got so sick after my shot. I was working in retail though and was majorly stressed out. It was bad cause I was handling cash and credit cards all day long. That's the dirtiest stuff you can touch.

Sorry you're sick Cat. Hope you feel better. I'm going to try to stay warm tonight. It's going to be cold here for the first time.

I'm taking the SIBO breath test in the morning. I will be looking at some more nursing homes later in the day. I really need to do something fun for myself. If it's not too cold, I may go to the beach.
 
The beach! That must be nice. It snowed here today. :p No beach for me for like 8 months, ha ha. Soon there will be plenty of sledding though! ;)

If you get the flu vaccination - make sure to get the shot (contains dead/inactivated flu virus & cannot make you sick). Do not get the nasal spray (contains live weakened virus and can make you sick). And keep in mind it takes about 2 weeks to take full effect - it's possible you caught the actual flu last year before immunity took hold from the shot.
 
Omggg guys. Trying to drinking this Colyte prep and it's so disgusting. I am so nauseated and I am trying not to throw up :( it has some kind of tropical/pineapple flavour which is making it way worse. I "only" have to drink 1L. Thank goddd I don't have to drink the whole 4L.

Appointment and pill cam coming up in a bit over an hour.
 
Jessie, I can sort of relate today. I am doing a breath test at home for SIBO. I just drank 10 oz of glucose solution. It gave me D. I'm still in the middle of collection breath samples!
 
Good luck Jessie and Moogle with your tests today! Jessie, your last post was a few hours ago so I presume you're now hooked up to the pill cam belt and everything is going okay? Are you able to go shopping as you wanted to, or did the prep sideline you? At any rate, good luck and keep us posted!

Moogle, I haven't had that SIBO breath test myself, it sounds interesting though. So you just drink some stuff and breathe into a bag every so often? And then they test the bag I'm guessing? With all the modern technology nowadays, it never fails to amuse me that there's still old-school tests still going strong. Tests like breathe into this bag or poo into this cup still hold up, apparently! :p Good luck with it, I hope you get some kind of answers from this.

I'm feeling quite a bit better today. Nausea is finally gone - guts are still a bit wonky and crampy, but much better than they were. Not so fatigued, less sniffly/coughy/headachey, and I feel more or less human, so yay! I think this cold is on its way out. :)
 
Hope your pill cam goes well jessie! :)
And same to you moogle for your breath tests!

I had my flu jab today.. and had my 2nd hepatitis B jab in the other arm ugh...! (I have my 3rd hep b jab in a month to complete the vaccination course)

My left knee is starting to act up again.. I can tell the inflammation is coming back.. boo! Hopefully if I stay extra careful to not miss any sulfasalazine doses.. it might settle down *fingers crossed*

How is everyone else today?
 
Yay lsgs, you get to start LDN! :) That's great news, and I hope it works really well for you. Please keep us posted, I'll be interested to hear how it goes. Good luck with it!

Bozzy, that sucks that your knee pain is coming back. I think my hip pain may possibly finally be getting better - it's odd but possibly the steroid shot finally had some positive effect? I did a tiny bit of jogging last week and no pain, and then yesterday it snowed a little and also no pain. Those are my 2 biggest hip pain triggers, although to be fair it was only 3 mins of jogging and it only snowed for less than 10 mins, so maybe those events didn't last long enough to trigger my pain. (Although in the past, 4 mins of jogging would put me in pain, so surely 3 mins would have at least given me a twinge?)

Anyway, I recall you said that the steroid injection you got into your knee did wonders for you, so maybe it's time for another injection? Are you doing any exercises/physical therapy for the knee?
 
Isgs-- I tried LDN about a year ago, and I had to stop because of severe, neurological side effects. However, I'm apparently in a very tiny minority. Most people either improve with LDN or nothing happens (positive or negative). I hope it goes well for you! What is your starting dose? I started on 4.5 mg, and I'm wondering if I should have started lower.

Good luck to Moogle and Jessie with the tests today! I hope you get good info that aids in your treatment.
 
Hello everyone! Thanks for the med congrats - made me smile to see them and I was so pumped to go the pharmacy and pick it up. :D
I took the first one yesterday (the regular schedule is every day, 30 minutes prior to first meal on an empty stomach so I have to get up earlier!). I hadn't eaten for a while so I took it about 2 hours before dinner. Except the lesson of the evening seems to have been: DO NOT take the stool softeners you normally take after taking Linzess! :eek: OOPS! So I had an evening which was probably much like some of your normal days - multiple trips to the bathroom, including a couple after going to bed. Yikes! None this morning so I think not taking the Dulcolax was the key. I hope so anyway because having diarrhea freaks me out, since I'm not sure how long it takes my Keppra to get into my system and it would be VERY BAD if I don't get the whole dose into me. I don't want to look like -----> :rof: that again, except without the laughing part.
 
Cindy, yikes! But speaking as someone who tends to have chronic diarrhea, the only medication I've ever passed undigested is Asacol/Delzicol (which I'm no longer on). Does your Keppra have a special release coating or anything like that? If not, I wouldn't worry about it at all, and even if it does have a special coating, it's probably still okay. I'm now on Pentasa which has a special coating, and I seem to break that down just fine even on really bad d days.

But I do understand your concern. There was one time a few years ago that I did kind of freak out, thinking that my birth control pills might not be absorbing properly due to the amount of d I was having. So I switched to the ring and got off the pill, just to be safe. I was probably fine, but sure did not want to have an "oopsie" happen especially when I was feeling so yucky.

Chickadee, I swear, so many of us on here seem to have weird/rare reactions or side effects - makes me wonder how "rare" these side effects actually are (or maybe us undiagnosies are just special that way, as we seem to be guinea pigs maybe a bit more than diagnosed folks do). I've now had 3 weird/rare side effects - I appear to be outright allergic to Compazine (it makes me feel like I can't breathe!), I got horrific vomiting and nausea from Hyoscyamine, and of course all that fun that I just went through with the steroid injections. Good times. :p If you don't mind me asking, what exactly did LDN do to you? I've only heard about LDN what you said, that it typically either helps or does nothing.

As for me - yay, my appetite is back! I'm eating some potato chips to celebrate this fact. :)
 
Hey all! Long time, no checking in. Just wanted to drop by to wish everyone well and probably bid ya'll adieu, as it looks like whatever's going on with me, it's not Crohn's or any of its IBD-esque cousins.

Saw a rheumatologist this week who said I had levido reticularis (a skin discoloration with a sort of lacy, purplish appearance) but apart from that, nothing really jumped out to her -- at least, none of what she called "my diseases", aka serious rheumatological disorders. I'm hypermobile in a lot of joints and she said that's probably a reason why I get occasional aches. Ordinarily, she'd recommend low-dose aspirin, but she said I should stick with acetaminophen. (She cautioned me more about my minor stomach erosions than previous doctors had and said avoid aspirin and NSAIDS because, in her words, "I do NOT want to cause your major GI bleed.")

Anyway, the rheumy said I most probably won't even need to see her again. Always good news -- although I did like her; she knows her stuff!

As for what's wrong? The answer is still ????

Apparently levido reticularis is usually a benign idiopathic finding, especially in young women. (In the benign cases like these it's usually an indication of sluggish blood flow when it's cold out.) That said, sometimes it's a sign of lupus, other autoimmune problems, lymphoma, or antiphospholipid something-or-other -- another thing I'd never heard of -- so she ordered a few tests. She said it's probably nothing, especially since we already know I'm ANA negative and basically *always* have low inflammatory markers, so we'll see. I'd love to get back to normal.

If I keep feeling more or less like I have been the last week or two, I'm happy to relegate this chapter of ill-health to my personal history books and move on with my life, no explanation needed. I haven't had a migraine in weeks, my stomach doesn't hurt like it had been, and even my lymph nodes have stopped getting the brief shocks of pain they'd been getting. *AND* I haven't had any bleeding in while now ... unless the orange-y gunk accompanying most of my BMs is blood. Which I doubt, because in what may go down in history as the dumbest-yet-most-constructive toilet-related decision I've ever made, I decided to give the stuff a whiff and discovered it smelled like some kinda sugary breakfast cereal?!?

All in all, I'm doing a heck of a lot better. Haven't had a fever or horrible diarrhea in a while now, and a lot of the other minor things bugging me seem to be subsiding. That, or I'm getting used to them. Either way, I'll take it!

Hope all is well. Cat, enjoy the chips; lsgs, enjoy(? :) ) the naltrexone. I have to laugh seeing naltrexone here, of all places. I'm familiar with it -- but that's because I'm in recovery for alcoholism and know a lot of folks who take naltrexone to curb their opiate/booze cravings :). Who knew it had so many uses?
 
Hi Bureaucratic, I was wondering where you had gotten to! Did you survive the govt shutdown okay? I remember you saying your job would be affected by that - is all mostly back to normal in that regard now?

As for bidding us adieu, don't feel like you have to! You're still undiagnosed, after all - you said yourself the answer is ????. I started this club and I'll never kick anyone out (even if they get a diagnosis, if they want to stay they certainly can!). So don't feel like because it's maybe not IBD that you have to leave us - we're always here for you, whether you need support or info or just to vent or whatever. So don't feel pressured to go, we're happy to have you stick around if you want to! :)

Sounds like you've been feeling a lot better lately, that's wonderful and I hope it lasts! I hope the rheumy can get you some kind of answers too. Personally I always have low inflammatory markers as well, and I did read that approximately 10% of IBD patients will never have raised CRP/ESR, even in an awful flare. If I am indeed an IBD'er, then I'm in that 10% - sounds like if you're an IBD'er then you are in that minority too. And like you said, it may not be IBD. But with bleeding & fevers and pain/possible obstructions in the past like you described, I would still keep IBD in the list of possible suspects.

As for the orange gunk - I have no idea! It's not like oil, correct? I've passed what looks like orange oil that floats on top of the toilet water - turns out that is undigested fat (body heat turns fat from a solid to a liquid, which is why it looks like oil - not sure why it's always orange though!). I think I've read that orange stools can indicate inflammation, but I can't remember where I heard that and don't have a source for it, so that might be incorrect.
 
Cat, I *did* survive the shutdown. In fact, congress gave furloughed employees back pay for the time missed -- a somewhat unexpected and much appreciated decision. It's a huge relief after all the debt I had to put on my credit card to make sure I'd still have enough in my checking account to cover rent. The uncertainty was the worst part of it -- but the time to work on art and relax was wonderful!

On that note, I *do* get why people are frustrated about the whole "paid vacation" perception, and I'll admit that for people like me who don't have kids and only have to support themselves, that's kind of what it turned out to be. But there are loads of employees who struggle to make ends meet even with a regular check -- so I'm really glad they get that back pay.

Mostly because I feel really lucky that I *could* have survived w/o the back pay (albeit with some major late fees!) I'm planning to donate 25% of my "back" pay to charity. Haven't decided where to donate yet, but I'm looking for an organization that serves people who rely on government programs that've been cut because of federal spending reductions.

ANYWAY, I suppose I'll keep lurking here :), Cat. After all, where else can you talk about orange sugar-scented poo goo and government spending in the same post and not get, you know ... banned? LOL.

(Oh, and re: that orange grossness -- no, it's not oily. Honestly, the best way I can describe what it looks like? Earwax. EWWWWWW. I've been eating a lot more fat on purpose to keep from losing weight unintentionally, but I don't think this is fat. The sweet smell makes me think some kind of fructose/lactose/glucose/sugar absorption problem might be the culprit...)

Does anyone know much about vasculitis? The more I read about it, the more I wonder if that's what's going on with me...
 
Cat - I'm glad you're feeling better. Enjoy those chips while you can! I have a craving for chips too. I don't have any though. Boo.

Cindy - That happened to my mom. She has IBS-C and she drank some natural calm, took 2-3 stool softeners, and I told her to eat a bunch of lima beans and a sweet potato. It helped but then she was in the bathroom non-stop. Whoops! Hope that new med helps you though! :)

I was able to finish the SIBO test. Having D in the middle really wasn't cool. Oh well, at least it was free. :) I should get results in a week.

I went to the beach just for a bit. It's getting chilly but it was still very nice outside. The ocean is really peaceful. Paramount Pictures is shooting a new Sponge-Bob movie in Savannah and there was a lot of trucks and production equipment at the beach. They put palm trees down the pier for the movie. I'm not a fan of Sponge-Bob but it's cool it's happening here.
 
Cat-- My reaction to LDN was not immediate, but built up over the 6 weeks I was on it. It started as nausea, but I'm nauseous a lot of the time so I didn't think a lot of it. However, it got to the point where I constantly felt motion sick, was dizzy and nauseous. Finally, I couldn't focus my eyes-- couldn't read, drive or even watch tv (audiobooks were my friend)-- and had to lie in bed without moving. The crazy thing is that these effects persisted for about 6 weeks AFTER stopping the med. My doctor has prescribed LDN quite a bit, and he said that only 3 of his patients (including me) have had effects like this. I am allergic to several medications and have bad reactions to a few more. Maybe I'm just med-sensitive, but obviously, LDN wasn't the med for me. I would still encourage people to try it though. It didn't do any permanent damage to me, and it does seem to be promising for many.
 
Moogle, kind of cool we were both doing tests! Glad yours is over and sorry about the D. Hope it is better now :)

Thanks Cat! Yes I was hooked up at that time. Everything went well with it. We drove over to the area the evening before so I got lots of clothes shopping done the night before and then today I did other shopping during the day today! The prep made me really really nauseous and I did end up vomiting some. I did have that much results with it so i hope it was sufficient. I had been on clear fluids since 12 since the day before anyway; and the night prior to that I had taken big dose of dulcolax so I think probably there shouldn't have been much left!

I did get to meet with the GI first and he went all through my history. He was very nice and thorough. He said at the end of our discussion, he feels it is an overlying/widespread motility disorder triggered by antibiotic use or infection. He said we will see what the capsule endoscopy shows, but that is his initial opinion. They said I will have the results in 1-2 weeks. 2 weeks at the most they said, cuz he reviews them himself and is very timely in reviewing them. When they checked the cam to see that it was through to my small bowel I got to see what it looked like and didn't see any ulcerations or anything.

Cat, glad you're feeling better!

Thank you Bozzy! Fingers crossed for your knee to settle down!
 
Hey guys. Yesterday was much better. No unexpected bathroom visits. I did, however, have an sudden extreme dizzy, off-balance nearly-falling spell that lasted several minutes last night, and had some slurry speech the rest of the night. Concerning because it could have been a breakthrough seizure if my Keppra didn't get absorbed. At least the D stopped and I shouldn't have to worry about it happening again, but it definitely confirms what my neuro oncologist said about not weaning down the Keppra.
I'm kind of trying to closely monitor myself to see how the Linzess is working - so far, there've been some rumblings but that's about it. I had a brief bout of pain last night but that could definitely have been some cramping aftereffects from the D. Now if I could just get my appetite back... turns out loss of appetite is a side effect of Keppra and mine has gotten less and less since I went up so high on the dose.

Cat, I'm excited about your potato chips! Salty crunchy goodness for you! :) I hope you really enjoyed them. Hopefully this feeling better trend sticks around for you and you're able to be a workout demon again.

Jessie, I'm glad you don't have any ulcerations on your pill-cam study. Does the doc think this motility disorder thing is treatable and will settle down? or is it a permanent thing?

Moogle, that's kind of exciting that you can watch a movie being made, cool!

Bureaucratic, pretty inspirational that you're planning to donate your backpay. I did think it was a good thing that they backpaid those who were furloughed ,because so many people depend on their pay but didn't have a choice about not working.
 
Hello c:
I've been to this forum a lot over the past year since my symptoms started; it seems like the one place on the internet I keep returning to when I feel my lowest, when my pain is the worst, or when I feel the most alone. Especially the Undiagnosed Club♥ It's hard for me to reach out to individual people suffering from IBDs and ask for their support because it's not their obligation. A place where everyone explicitly supports each other is wonderful to have.
I see my second GI next week and I'm nervous and anxious about everything. I sort of want to do an intro post or a what's-been-going-on-with-me, here's-why-I-think-I-have-Crohn's sort of post but I just tried typing it and it was incredibly long by the time I was halfway through. I've just been going through so much, I don't know what to do anymore. Everyday there's new pain, or something new to worry about it, and I'm scared of them not finding anything and me just being adrift in illness with no more direction; and I'm almost more scared to be finally diagnosed and know for sure that this will be for forever. My husband is so helpful and caring and supportive, but I still feel so alone.
 
rainbowrevolts --

Let me just say you're not alone. Not at all. (And welcome!)

I can't tell you how many times I've tried to write up my whole story -- only to get halfway in and give up because it starts looking more like a novel than a post for a message board.

I think almost anyone with an as-yet-undiagnosed illness probably feels adrift from time to time. If one thing can provoke more anxiety than illness itself, it's the powerlessness of not knowing why you're sick. The fact that the kind of symptoms you'd have to Google to wind up on a Crohn's forum aren't exactly dinner table conversation certainly doesn't help either. There's an "ick" factor and stigma to a lot of what everyone here goes through on a daily basis. When you're wondering why you're seeing blood in the toilet, that kind of thing, it's hard to talk about it -- even in an anonymous but super supportive forum like this one. I'm really glad it exists -- not just for the people who join the conversation, but for all those people out there feeling totally confused, grossed out, alone, whatever -- who just need a little comfort knowing there are folks out there going through the same things.

Hang in there and best of luck!


In other news, my rheumy actually called me and left a message today -- my GI *never* calls me. Anyway, apparently my Vitamin D is super low. (Which is weird, because I get a fair amount of sunshine and my calcium's always fine, even on the high side of normal.) Off to go figure out what the heck low Vit D means...
 
Mccindy, I just had my pill cam yesterday (24th) so I don't know yet if there are ulcerations or not, it hasn't been read.

If it is the motility disorder like he thinks, he says it may improve but is usually a long term thing. There are a few other medications I could try although I'm already taking one of the best ones (domperidone/motileum). Initially it didn't seem to make any difference but after about a week the nausea started to seem slightly better and now that I've been on it for almost a month, this past week I have had some days where I have not vomited and ate decently which has not been happening for a long time!!! Back to the big abdominal distention though when more food is staying down..

There is a medication called cisapride which has been removed from the market, but if you get special approval for it you can get it. It has prokinetic effects on whole GI tract and is extremely effective. It was removed due to some cardiac effects it had, but in typical use rarely had side effects. If it is a motility disorder that I have and I continue the way I am i would like to see about getting approved for that med.
 
hey guys, how are you all?

Im still having a rough time, had one OKish day in the past 5 :(

Going to see the consultant for the first time on Thursday, what questions should I ask?
Im going to take a list in cos ill forget otherwise.
So far ive got
what were my blood results
what does he think it could be
what tests could I have
could I be given a 'working diagnosis' for occy health
 
Oh, sorry, jessie. guess I misunderstood. Hopefully you get a solid diagnosis out of all of this and are able to get on the meds you need. It would be great to hear you get relief and feel better!
Welcome rainbow, as Bureaucratic said, you are definitely not alone. Our stories are long ones and we all understand what you are going through! it is good to hear you've got a supportive husband, not all of the people on this forum are fortunate enough to have a supportive partner. (I do, and I really appreciate how understanding he is). If you have comments, or questions, fire away, and we're glad to have you join us!
Akiva, sucks to hear that you are having a rough week. You need a break! for the doc, make a list of all of your symptoms, as well as any foods you've noticed are giving you trouble. Also you could ask if it's possible a colonoscopy could be considered for you to help with diagnosis.
 
Hello everyone.
Sorry ive not been on, this is 1st time in a while. Im currently lying in hospital with a flare, been in for 4 days now:-( surgeons saying definitely crohns.......i suppose yay for a definite diagnosis but Im still kinda gutted (no pun intended), been told no sugery 'this time', so its now a case of facing surgery to remove my TI at some stage but they are wanting to leave it as a last resort. So Im waiting to see gastro to see what the next step is?
I havent been able to read the thread but you're always in my thoughts.

Ps. Please excuse any mistakes I'm typing on my phone.
 
lizbeth said:
Hello everyone.
Sorry ive not been on, this is 1st time in a while. Im currently lying in hospital with a flare, been in for 4 days now:-( surgeons saying definitely crohns.......i suppose yay for a definite diagnosis but Im still kinda gutted (no pun intended), been told no sugery 'this time', so its now a case of facing surgery to remove my TI at some stage but they are wanting to leave it as a last resort. So Im waiting to see gastro to see what the next step is?
I havent been able to read the thread but you're always in my thoughts.

Ps. Please excuse any mistakes I'm typing on my phone.
Click to expand...

Wow sorry to hear you're so poorly but at least now you can get proper treatment and hopefully start feeling better! Have you had tests in the hospital that diagnosed the crohns? Are you gonna start on meds?
 
Aw Lizbeth, sorry to hear you're in the hospital! :( Hopefully they can figure out a good treatment plan for you so that you get lots of relief without it bothering your diabetes too much. And congratulations/condolences on getting a proper diagnosis again - I hope this means your doctors take things more seriously! *hugs!* Keep us posted on how you're doing and what treatments they're thinking of trying. Good luck hun!

Akiva - I always write down 3 lists to bring with me to doctor appointments. A list of all my symptoms (including symptoms that don't seem related to my guts - if you have anything like migraines, skin rashes, eye pain, joint pain, etc - write it ALL down!). A list of all the medications & supplements I take - doctors like to know exactly what you're taking and what dosage. And a list of all my questions for the doctor, with the most important questions at the top of my list and the less important/less urgent questions at the bottom. These lists help keep me organized and help me communicate to my doctor much better (my mind tends to go blank when I get into the exam room, so I'm very reliant on my lists!).

Since this is your first GI appointment, I would ask for bloodwork (have them check all your vitamin levels, a complete blood count, and also ask them to check stuff like your CRP & ESR - you could also ask for them to check your thyroid levels and your ANA - I know that sounds like a lot, but the most important ones would be vitamin levels, CRP & ESR, and CBC - things like thyroid issues or lupus can also cause IBD-like symptoms, which is why I mentioned checking your thyroid and your ANA). Probably also ask for stool tests too, just so they can rule out things like bacteria and parasites, and they can also check your stool for blood (sometimes you can have blood in your stool but not know/see it - so ask them to check for "fecal occult blood"). Bloodwork and stool samples are a really good place to start. For the more invasive tests, most doctors like to start with colonoscopy. Sometimes they can do an upper endoscopy at the same time while you're sedated, so ask if you could do both tests at once if possible.

How's everyone else doing? I am okay, a bit tired but not bad. Oh, I might not be around much for the next couple weeks. I'm taking a bit of time off work as I have some vacation days to use before the end of the year (I sometimes use all my vacation days as sick days, so I kind of hold onto them in case I need sick days, and then if I don't use them all I end up taking a bunch of time off late in the year). I plan to use my vacation time to get lots of stuff done around the house and also to have some fun outside of the house, so I won't have a lot of time to post, but I'll try to read and will check in when I can.
 

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