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Well what a few days it has been for me.

Unexpectedly had a short letter from Rheumy yesterday, to say the heart ultrasound "had no significant abnormalities" which I am guessing is medical speak for normal. Of course that is good news my heart is fine.

Today had a call from MRI unit, he wants the MRA repeated. First thing out of my mouth was "Oh no, they had terrible trouble getting the dye into me last time!". lol. They obviously knew this as they've arranged for me to go into the Rhematology day unit to have the cannula put in before the scan at midday on the 29th Feb. Not great timing as Endocrinology is the 28th at 10:30am and 2 early mornings in a row not good, but these things have to be done.

Never had a test repeated before so wondering if it's something simple like he wants better pictures (although the tech checked them while I was still in he scanner to make sure they were ok before getting me out) or if something has actually been found. Trying not to get my hopes up. Because each new theory that comes along seems a perfect fit until the tests come back normal. And for the record I have made inflammed/blocked blood vessels in chest/belly a very good fit with all of my symptoms haha.

If it is that I would say they are affected near my bowels which after 5 years is causing the D and pain, perhaps they are inflammed and enlarged and so irritating my bowels/causing friction, and if my aorta blood vessel (which they checked, I believe it runs from heart right down the abdomen) is affected could be causing the left shoulder-to-fingers pain, since when you have a heart attack, you get pain in your left arm, so if something was wrong there it follows could cause the pain I get, see what I mean about making things fit
:dance: And the fatigue would be pre-existing ME made worse by the new problems. I do this for every new theory :ylol2:

Anyway I see Rheumy on the 22nd so not long to wait to find out he just wants better pictures to be sure it's all normal :rof:

I am also wondering if he will look into Arthritis again as since the pain has spread (which I will be informing him of, I didn't last time as I wasn't yet sure if it was temporary or not) for some odd reason on top of the normal pain the left side of wrist and one knuckle are really, really sore and tender to the touch which sounds just like RA doesn't it!
 
Last edited:
StarGirrrrl said:
Was it tested via blood or biopsy during upper endoscopy? The former can be unreliable and the latter is the gold standard to dx cealiac. Also if you weren't eating gluten at the time of testing, there would be nothing to produce the antibody so the tests would come back normal anyway.
Click to expand...

After looking at my records, I have had two tests for Celiac via blood and two tests for Celiac via biopsy. The most recent test for Celiac was via biopsy. I had been eating items with gluten in the days leading up to the test.

Thinking this is all Crohns related... Loss of appetite has returned along with diarrhea and nausea. Still have minor inflammation in the Sigmoid region of the Colon. Doctors not seeing anything in small bowel, but only successful imaging test has been MR Enterography. So, can a GI diagnosis for Crohns come from symptoms alone or does there always have to be a definitive biopsy that shows Crohns?
 
Heres is the Wiki pedia version.
Faecal calprotectin
From Wikipedia, the free encyclopedia
Measurement of faecal calprotectin is a biochemical test for inflammatory bowel disease. It replaces the need for invasive colonoscopy or radio-labelled white cell scanning in many clinical scenarios.
[edit]Structure and function

Calprotectin is a 36kDa calcium and zinc binding protein expressed by the gene S100 calcium-binding protein A8, S100A8. It accounts for 30 to 40% of neutrophils' cytosol. In vitro studies show it has bacteriostatic and fungistatic properties. It is resistant to enzymatic degradation, and can be easily measured in faeces.[1]
[edit]Use as a surrogate marker

Reference ranges for calprotectin
Patient age Upper limit Unit
2-9 years 166[2] µg/g of feces
10-59 years 51[2]
≥ 60 years 112[2]
Inflammatory bowel diseases (IBD) are a group of conditions that cause a pathological inflammation of the bowel wall. Neutrophils influx into the bowel lumen as a result of the inflammatory process. Measurement of faecal calprotectin has been shown to be strongly correlated with 111-indium-labelled leucocytes - considered the gold standard measurement of intestinal inflammation.[3]
The main diseases that cause an increased excretion of faecal calprotectin are Crohn's disease, ulcerative colitis and neoplasms (cancer). Levels of faecal calprotectin are normal in patients with irritable bowel syndrome (IBS).[4]
Still a relatively new test, faecal calprotectin is not in widespread use.
Specific indications for measuring calprotectin are in:[5]
Identify organic bowel disease against functional bowel disease (IBS), and thus avoid the need for invasive tests such as colonoscopy.
Assessing efficacy of IBD treatments.
Predicting relapses or flares of IBD.
Offer an alternate diagnostic test for patients phobic of needles or endoscopy.
[edit]References

^ A simple method for assessing intestinal inflammation in Crohn's disease. Tibble et al. Gut.2000; 47: 506-513
^ a b c Joshi, S.; Lewis, S. J.; Creanor, S.; Ayling, R. M. (2009). "Age-related faecal calprotectin, lactoferrin and tumour M2-PK concentrations in healthy volunteers". Annals of Clinical Biochemistry 47 (Pt 3): 259–263. doi:10.1258/acb.2009.009061. PMID 19740914. edit
^ Role of faecal calprotectin as non-invasive marker of intestinal inflammation. Costa F et al. Dig Liver Dis. 2003 Sep;35(9):642-7
^ Calprotectin is a stronger predictive marker of relapse in ulcerative colitis than in Crohn's disease. Costa F et al. Gut. 2005 Mar;54(3):364-8.
^ A simple method for assessing intestinal inflammation in Crohn's disease Tibble et al. Gut.2000; 47: 506-513
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Very Nervous About My CT Enterography Today
I feel sick already.

Nauseous.

joint pain.

Can’t eat or drink anything since midnight, and I have a sore throat.

Tummy is gurgling and hurting.

Keep running back and forth to the bathroom, I might as well just sleep in there.

I need to do homework but I can’t concentrate enough to do it.

I can’t believe I have to drink 4 bottles of barium when I can’t even swallow my own saliva.

It’s going to be a really rough day.

I just need a hug… :( I’m a mess.
 
Good luck Sunshine! Everything is going to be ok! At the end of the day this will be over and it wil just be a nightmare in your past. Hang in there!
 
Godd luck and hugs today Sunshine! Focus on how good you'll feel when it's all over :ghug:

Well the mystery for me deepens. Had another note from Rheumy today, the reason given for the re-test is "It was a procedure that we cannot conclude on". It's rather vague and could be anything from need better pictures- need to be sure of what we found. I do know while I was in the scaner I moved quite a bit, shivering from cold (despite blanket) and shock at what i'd just been through! I figured a snap of blood vessels didn't require me to be that still unlike previous MRI's looking at muscles and therefore lots of detail to capture. And I wasn't asked to keep stiller.

I sure can't wait for the 22nd to come so I can quiz him in better detail lol.

It's also a bit alarming I am getting these letters from him- don't get me wrong he's been fab at contacting me if I email him to ask something etc, but he's never initiated it before. And I did find it really strange he sent me one about the ultrasound too earlier on, does "no significant abnormality" really mean something small was found? Never had letters before saying tests were normal, had to wait months in the past in some cases to find this out in clinic, and I have a long standing appointment for the 22nd so not long to wait to find out verbally which has always happened in the past.

I just don't know and got to play the waiting game.
 
Hi Sunshine, good luck with your test today. I had the CT Enterography not long ago and what I had to drink was not the thick barium. It was more like contrast with a little barium mixed in it. Not great, but not near as bad as the barium I had to drink before the small bowel follow-through. I hope that is all you will have to drink also. I hope you gets your results and answers soon.
 
good luck sunshine - i think you're doing close to the same test i did. it was like slightly sicky sweet gatorade. not too awful. and also, the contrast while you're in the scan, it will make you *feel* like you have to pee, but rest assured, you are not peeing on yourself.
 
i thought i'd let you all know, that im feeling strangely better since my colonoscopy.. is that normal? lol maybe the gas they pumped into me did something haha.

my bowel looked normal to the naked eye :) just gotta wait for my biopsy results in the next 4weeks.

seems as im feeling better (although i still need to avoid certain foods and my toes/knees still hurt) i dont think ill badger my gastro to do more tests if the biopsies are negative. (im guessing other tests would be negative anyway if im feeling fine)

so if its IBS that i have - it well never get any worse.. and if it does get worse - then the docs im sure will re-investigate at a later date

i just dont feel as stressed now that my stomach pains have eased, and my appetite has got better now.

how is everyone else doing at the moment??
 
Sunshine, GOOD LUCK! I hope it goes as smoothly as possible and that you can get some useful information out of this test. Hang in there! Thinking of you! Please keep us posted, we're all hoping you can finally get off the diagnostic roller coaster.

Star, I remember being freezing cold when I had my MRI as well. I'm not sure if all MRI machines are like this, but during mine they were pumping cold air through the machine. It was like being in a wind tunnel, with freezing air blowing over me. I was wearing a sweater and warm sweatpants and had a blanket over me, but I was absolutely freezing like you said you were. I must not have been shivering or moving around too much though because they got fine pictures of my liver. Still, if I have to have an MRI again in the future, I will be tempted to show up in my winter coat, hat, gloves, etc! Brrrr.

Speaking of cold, it's snowing here and is supposed to be miserably cold here tomorrow. Yuck! Fortunately I probably won't have to walk the dog. She's still limping and is only supposed to take short, limited walks for now. I think her medications (antibiotics and antifungals) are working, as her limp seems slightly better than it's been, but she's still visibly limping although seems otherwise fine and happy. She's been getting lots of treats and bones to make up for the lack of walkies. At any rate, Ms. Lily Pooch and I shall be staying in this weekend! No playing in the snow for us.

The sad part is, I knew it was going to snow. I woke up this morning and my hip was aching. I was like, what's up with that? My hip has been really good lately. Then I looked outside and it had just started snowing. I've heard of old people who can tell what the weather's going to do based on a bad hip or knee or whatever - I guess at the age of 32 I'm now one of those old people too!

BozzyLozzy, welcome to the club. I had the opposite effect after my colonoscopy, I felt significantly worse. I'm not sure if it was because they took a ton of biopsies or what, but the day after my c-scope I had waves of tremendous pain. When I called my GI to let him know, all he said was that if pain is one of my usual symptoms then it wouldn't be unusual to have more pain after a procedure like that. He did say I should go to the ER if it got worse or if I got a fever or anything like that. It didn't get worse but it took awhile for me to feel better and recover from that. It's been nearly 2 years since my c-scope and I'm not looking forward to the day when I have to have another one.

I hope everyone's doing well. Have a good weekend!
 
Cat-a-Tonic said:
Star, I remember being freezing cold when I had my MRI as well. I'm not sure if all MRI machines are like this, but during mine they were pumping cold air through the machine. It was like being in a wind tunnel, with freezing air blowing over me. I was wearing a sweater and warm sweatpants and had a blanket over me, but I was absolutely freezing like you said you were. I must not have been shivering or moving around too much though because they got fine pictures of my liver. Still, if I have to have an MRI again in the future, I will be tempted to show up in my winter coat, hat, gloves, etc! Brrrr.
Click to expand...

I believe the magnet is cooled with liquid nitrogen and maybe liquid helium, too. So the room has to stay cold for the magnet. When I was in college, the room in the chemistry department that housed the NMR machine was also cold, and the tech told me it was b/c the magnet had to stay super cooled. An NMR machine and MRI machine are essentially the same thing, but with different applications. I hate being cold, and whatever the case, that sounds miserable.
 
Yeah I figured the room stays cold because the machines have to be kept as cool as possible. :rosette1: This time I will wear a warmer sweater and should be nice and relaxed lol unlike last time. It's actually really cold in the UK at the moment (barely above freezing by day) so that on top doesn't help. Cold outside means even colder inside lol.
 
THANK YOU EVERYONE FOR THE KIND WORDS AND SUPPORT! I KNOW I CAN ALWAYS COUNT ON YOU ALL FOR THE SUPPORT WE ALL NEED! :)
It was probably the worst day ever. It was SO tough to get through.
I’ve never gone through anything like that. I was so exhausted after it all. It was emotionally draining and of course painful just because I think I was already in a semi-flare.
To start off with, I woke up with severe abdominal cramping and nausea.
I drank all the stuff they gave me for the test, and it went through me so fast that I was only able to drink 2 out of the 4 bottles they gave me until I had to get the scans done. I went to the bathroom 10 TIMES in 2 hours, lots and lots of D… I was so sick. I got this thing called Glucagon put in my IV for some of the scans and that made me EXTREMELY nauseated and was supposed to paralyze my intestines so they stopped "moving" around... well that made me cramp up super bad... Then they put the contrast in my IV and that was so painful through my IV, for some reason my IV spot hurt really bad so it felt like it was getting forced into my veins, and it went through really fast. And through all of this they are yelling at me telling me to stop moving around and lay flat... goodness, it was hard to do. I kept dry heaving and thought I was going to throw up on myself... It was just AWFUL. My mom was there with me the entire time though holding my hand. I was a mess, I’ve never felt so sick during a test before… :( Definitely didn't expect it to be so rough, but I mean, my stomach hurts when I eat something "normal" so when I drank this stuff plus all the stuff in my veins... that's nothing close to normal lol... so i understand why I felt so bad. Just glad it's over with... SO GLAD.
I GOT THROUGH IT!!!! I was so proud! :) THANK GOODNESS.
My doctor and nurses were so proud of me because they saw me before i had done the test and I was pale and sick, so they were so proud that i was able to drink the stuff and keep it down... even though it raced through me really quickly. They are always so nice to me.
Hopefully the results give my doctor some more info on what’s going on.
My follow up appointment is on the 27th unless we can get something earlier! But, I’m anxious, hope it shows what my doctor needs to know in order to help me.
*PRAYING* <3
 
Sunshine that kept telling me oh it's just IBS for years until I finally got a real GI doc who didn't wait 6 weeks or until I was feeling better to do a scope and what do you know bleeding ulcerations all through the colon diagnosis Chrons
 
Hi guys...Sunshine, i'm glad that you have that nightmare behind you now. It's on to better & brighter times for you!

I hope everyone's doing well. I've had a rough few days. I'm a bit scared that i'm starting to flare again. I'm just not ready yet (as if you ever are ready for another one). The D's back...food's going pretty much right through me. I'm SOOO tired. No energy, which makes getting through an 8.5 hr workday so incredibly challenging. And the pain's coming back too. It's amazing just how quickly the mind can forget. I wasn't in constant pain, but now it's back...and i'm reminded just how exhausting it is. Now i'm back to not being able to make plans ahead of time b/c I have no idea what tomorrow or a week from now will bring!:ywow:

I met with a neurologist this week. He's sending me for an MRI & of course he sends me home with 4 different kinds of migraine meds to try. I also managed to get my dr. to make me a referral to an opthamologist (Cat, thanks for the info about Uveitis). I've noticed a few of my symptoms match up. So I just want to have that checked out...sooner than later hopefully! Waiting for my appointment notfication.
Don't have the results from my 24 hr pee test. Don't have results of the bloodwork my GI ordered.

I truly hate popping pills, but that's all i've been doing the past few days, just so i can get through work. And sleep...oh what i wouldn't give for a solid deep night's sleep!! None of this waking at 2am & not being able to fall back asleep. The morning after taking amitriptyline I feel like crap. I guess this is yet another med i'm just not going to be able to take. I wonder if sleeping meds can trigger a flare? I remember during the summer I was taking sleeping pills the dr prescribed for 20 days straight. To reset my sleeping pattern...they worked sleep wise, but I noticed my health took a nose dive after I finished the prescription. And the other day I took amitriptyline & then the next morning the D was back & I started feeling worse.

Does anyone else have a messed up sleeping pattern? I'm either waking up with night sweats, or because of pain, or for no reason at all. Is anyone else the same way? I'm guessing this is also a part of IBD??

Well, I hope you guys are keeping warm - it's been pretty cold out here too. Take care everyone & here's to hoping that tomorrow will be a better day!!:rosette2:
 
Ever, I get awful night sweats too when I flare. My sleep pattern is all messed up too but right now that seems to be due to stuff like Amitriptyline and steroids (I'm on steroid suppositories at the moment for my hemorrhoids). I do recall, back before I was on any meds, during a flare it was VERY difficult if not impossible to sleep. I'd have to wake up every so often to run to the bathroom, I couldn't lie down due to the nausea and pain, etc. I hope your flare ends soon! I know just what you mean, I've been in remission for nearly a year and it would still be too soon if I were to have a flare. It's one of those things that you're never ready for the next one.

Sunshine, that experience sounds just horrible, I am glad it's over with and I really hope it gets you a useful result so you can finally have some answers! I hope you're resting and healing and feeling better in the meantime. Hang in there and good luck on the 27th! Big hugs!

Oh, and Ever mentioned the cold - it's been absolutely freezing here today! Stay warm everyone! I see a nice hot bath in my future. :)
 
Hi ever Hopeful.
My sleep is very disturbed and generally only for 4 hours before the discomfort wakes me up .I get sweats very random any time anywhere. Im also just on amitriptyline and its given me a hangover and the feeling like i was hit with a train. Hasnt done anything for the pain yet.

UN DX IBD symptoms 3 years.

Asacol 800mg for the unknown
Amitriptyline for pain.

Various other meds that didnt work.
 
PVail, Amitriptyline never did anything for my pain either. I've been on it for over a year now. I stay on it because it does an excellent job of preventing headaches and migraines. When I first started it, I was very groggy in the mornings. That passed relatively quickly though and now I feel pretty normal when waking up. My GI thought that Amitriptyline would help with my gut pain and cramping, but I didn't notice any difference there. My understanding is that Amitriptyline works for IBS much better than it does for Crohn's/Colitis. So that seems to be another piece of the puzzle, that I don't have IBS since Amitriptyline does nothing for my tummy.
 
Yep I was tried on Ami too, and it took a full month before the "groggy" side effects passed, I think it's usual for it to take that long sadly. In fact after that month mark, it passed and went away despite my dose going up and didn't ever come back!
 
Cat-a- tonic
Couple of days now with the Ami and it just makes me groggy . Its a bit of a waste. The pain for me is just constant. I was also given it for the gut pain and cramping and its totally uneffective so back to the drawing board. I waited so long for the Pain clinic appointment i suppose i was hopeing for too much. I think the hangover feeling is because I had really bad D at work and was probably dehydrated when I woke up. But we live and learn with these things. Next !
 
Hi Pvail, you probably know this already but Ami is an anti-depressant, used at low doses to try and treat the symptoms you describe. As an AD it takes time (at least 4 weeks) to build up in your body and (hopefully) start working. Not like say a painkiller where the effect is pretty immediate or anti-biotics which kick in after a few days. When I was put onto Ami it was a good 3-4 weeks before I noticed any changes.

I'd say give it 6-8 weeks and if no joy speak to your Dr again. I was tried on another low dose AD after Ami stopped working (lasted a couple of years for me), and after 8 weeks I hadn't noticed any change so I stopped it with the agreement of my Dr. Well I told him I was stopping and he agreed lol.

:ghug:
 
Thank you so much, it was awful, but i'm just resting and trying to get back to whatever my "normal" is..lol

Oh and by the way, I loved when the radiologist told me that the barium stuff would make me constipated after I already went to the bathroom 10 times.. I looked at her and looked at my mom and just started laughing. I thought of you guys when she said that because only our tummy's would do the exact opposite than what everyone expects it to be. hahaha
 
Sunshine, how are you doing today? All recovered from that experience I hope? And I know just what you mean, if "normal" people's digestive systems do one thing then ours do the opposite! It's like, remember being a kid and saying it was "opposite day" and whatever you said, you really meant the opposite? That's how I feel sometimes, like my guts are stuck in opposite day forever. :p

How's everyone else today? I'm coming down with a cold but am otherwise feeling good. A little too good in fact! Ha ha. So, a few weeks ago I decided to be brave and try some homemade Mexican food. We went really mild with it, I had a burrito with a flour tortilla, ground turkey with mild taco seasoning (which in the past has caused an issue but didn't this time), tomato with seeds and skin removed, goat cheddar, avocado and a little sour cream. It was soooo good! I hadn't had Mexican food in forever and this was just heavenly. And, my guts didn't punish me for it! So then I went a bit crazy and I ate Mexican food literally like 6 more times over the course of a couple weeks. And my guts never got upset about it. It's crazy! I even ate at Taco Bell - I can have their ground beef even though regular beef upsets me. (Taco Bell's "ground beef" is actually mostly soy and fillers, there's hardly any actual beef in it.) So yeah, I gained like 4 lbs since I've discovered that I can once again eat Mexican food. Eek! It's kind of funny though, when I was really ill I couldn't eat Mexican food OR gain any weight. So it's not a terrible thing really. I just have to keep an eye on the calories for a bit now as I was already at the upper end of being at a good weight (I was 140 and now I'm 144!).

Oh, and for those who are interested to know, my dog has gotten worse. :( Yesterday we noticed that she now has a visible wound on her foot that wasn't there earlier. Hubby took her back to the vet today and they think she either has a small sliver of something (glass?) stuck in her foot that is causing the wound, or it might be a benign tumor that she chewed at (it was bleeding a bit yesterday). They took biopsies and Lily pooch is scheduled for surgery on Thursday. Just what we need, more doctor bills! Fortunately dog surgery is WAY cheaper than human surgery (without insurance it would have been over ten grand for hubby's kidney stone procedure and that was an outpatient procedure!). They quoted us $200 to $300 for Lily's surgery. The vet is going to call us either tomorrow or Wed and let us know what the biopsies find and if it's a tumor or not. Ugh, so stressed and worried about my poor dog! She's been getting lots of attention and treats and toys since she started limping but I still feel bad that my pet is in pain and needs surgery. :( And speaking of needing to lose weight, she does - and without walkies in her near future (plus the added treats) I think she and I will both have a few extra pounds on us. :(

I hope everyone else is well. Everyone give your pets a cuddle for me!
 
Cat, I love Mexican food! And being from Texas, it is abundant. Luckily spicy doesn't seem to bother me. My only food triggers that I have figured out are things like lettuce, popcorn, corn and a lot of high fiber foods. Thats one thing that confuses me because I know if it is IBS they tell you to eat a high fiber diet. I'm glad you are feeling better and hope your dog feels better soon!
 
Oh cat im so jealous! Do you remember last week, my colonoscopy went well and i started to feel much better? Well.. i made my favourite chilli con carne (mild, thinking it would be worth risking the bigD)... oh how wrong i was! I ended up with terrible D, stomach pains and indigestion. :(
Boo!!
 
Happy Valentine's Day!

:rosette2: Just wanted to wish my fellow undiagnosed friends a Happy Valentine's Day. Hope all of you have a decent day. And if not, that you can be as comfortable as possible throughout the day. Take care all!
 
CB, spice usually does bother me, even mild spices. In the past I have had issues with mild taco seasoning and also with garlic. Since I am apparently able to do mild taco seasoning now without repercussions, I'm thinking garlic is the next thing I'll be trying! I usually try "iffy" foods on Friday nights, so that if it makes me ill then at least I'll have the weekend to recover. There's also this recipe that hubby and I used to make, I think it's called mushroom pie. It's cream sauce, chicken, onions and mushrooms baked into these little pies. I believe it's a Russian dish (hence the cream). I haven't had it since I've been ill as onions have been quite an iffy food for me, cream is too (I'm lactose intolerant, although the enzyme pills work okay for me now that I'm in remission) and mushrooms are one of those no-no foods that are notorious for causing blockages. Sooo, I think if I cut up the mushrooms really small then it might be safe to try that one soon too. But for now I'm just loving Mexican food! I have to go to the pet store today and get my dog some booties to wear after her foot surgery, and there's a Taco Bell right next to the pet store. Hmm, I think I know what I'm having for lunch! Ha ha. :)

Bozzy, chili con carne is something I haven't tried yet and I don't know if I'm brave enough to! Chili usually has beans and beans are a definite trigger for me. I think beans in general are really high in fiber and that's what bothers my guts. I can't do beef either although I could substitute ground turkey (that's what I usually do, if you season it right it tastes great and is supposedly better for you than beef). I'm sorry to hear that the chili didn't work out for you. :( Chili is such a lovely meal on a cold winter day, I miss it.

Ever, happy V-day to you too! I hope everyone is well and that your tummies will allow you to have a bit of chocolate or whatever your favorite candy treat is.

Thanks to those who expressed concern about my dog, I really appreciate it! :) The surgery she's having is fairly minor (I believe they'll just be taking out the bad stuff and then stitching it up, they said she should be back to normal fairly soon after the surgery). We already have one of those e-collar things so she won't be able to lick her stitches, and I'm going to be buying her a bootie to put on her foot (I saw really ridiculous pink booties on a dog at the dog park so I'm thinking I must get a pink one for Lily!). She'll look ridiculous for a bit but then will hopefully be all better. :)
 
I just remembered this and meant to post about it earlier. It seems like the more people I talk to, the more people I find out have undiagnosed IBD-like issues! An old friend of mine from high school is a teacher, he lives in Japan and teaches English to students there. We've been keeping in touch via facebook. Recently he posted on FB that he's going to be having an operation soon. I inquired about the operation and he sent me a private message, saying he's having an appendectomy. Apparently he's been having digestive isssues for about 2 years - about as long as I've been ill! His doctors don't think it's Crohn's as it doesn't quite exactly match the symptoms (I know we've had some discussions about how some doctors won't diagnose Crohn's if it doesn't tick all the boxes and it seems like Japanese doctors are no exception unfortunately). But they do say he needs his appendix out. So anyway, he's having his operation next week. If that doesn't cure his gut troubles, I will be tempted to ask him to join our little club here or at least to check us out. So we may be having a new member of the club soon. I hope that's not the case and that his surgery makes him 100% better, but, I'm also a realist and I know the surgery might not do much. 2 years is a long time to go with a grumbling appendix! My fear is IBD. I hope my fears are unfounded and that my friend is okay after all.

On a related note, I thought that the typical Japanese diet was fairly non-conducive to IBD manifesting. I believe Japan is one of the countries with a low rate of IBD and diet is a big part of that (lots of rice and fish and seaweed, not a lot of unhealthy or processed foods). So it troubles me because my friend has been living in Japan for much longer than the 2 years he's been ill - I think he moved there right after college which would mean he's been there for about 10 years now. Maybe his American diet for the first couple decades of his life got the ball rolling, I don't know. He *does* love cheeseburgers so he hasn't eaten a totally typical Japanese diet.
 
Hi cat,that sounds just like me - apparently grumbling appendix for years (and when removed it, it was in such a mess with loads of scar tissue from repeated inflammation) but that was last october and im still having problems!! I really hope this works for your friend though. i was so happy when they removed it.. thinking i'd be fine :( oh woe is me lol!!!

(Just so u know, im 24 now.. and have had pain on and off in LRQ and bowel problem/cystitis/tonsilitis since i was 12)
 
I had my appendix removed 15 yrs ago during my first memorable flare. The surgeon diagnosed me with Crohns based on the appearance of my intestines. He said they were boggy, discolored and inflammed. My appendix was fine. No other colonoscopy, biopsy or test since then has confirmed Crohns. I was out of state on vacation when I had the surgery. I remain undiagnosed and confused!
 
I hope everyone had a good valentines day!

Ever, I was on ami at one point too, again to treat IBS. It never did anything for me. They then tried something similar, nortryptiline, which again did nothing.

Sunshine, I hope you are feeling better! My last CT scan was a awful experience too. :(

Cat, I hope Lily is ok! That's awful that she has to have surgery. :(

I am having an ok week. Since Stuart has been back my flare hasn't gotten any better, so I'm just taking it day by day. We are going to the German Alps this weekend for four days, and Stuart is super excited, but I'm hesitant about it. I know for us to do a full vacation I'm going to have to use more spoons than I have had lately. We have already decided that skiing is completely out of the question, but we will still be super busy. Full day tour to another town nearby, sledding, shopping, going to the top of the highest mountain...its all going to be exhausting! The other two times we have gone down there my illness has gotten in the way. I'm going to try really hard for that to not happen again!
 
Bozzy and CB, I'm sorry to hear that having your appendixes (appendices? appendi? what is the plural of that??) taken out didn't help. I will keep you guys posted on how my friend is doing and whether his appendix removal "cures" him or not.

Allie, thank you. I'll keep you posted on how Lily is doing. I got her the cutest bootie to wear over her foot while it heals (it's pink!) after the surgery, and we have plenty of treats and bones and toys on hand to keep her occupied while she recovers.

Ugh, I'm so stressed. I don't know if you guys saw my other thread, but in a nutshell - my sister-in-law just got dumped (the day before valentine's day) by her husband. They have 4 kids and he just up and left her and the kids, apparently he met someone else. I'm worried about my S-I-L and my nieces and nephews. I'm worried about my dog too. And I hate stressful situations! Not good. I'm trying to exercise more as that really seems to help with the stress but I'm still tied up in knots inside. I need a hug!

On a slightly funny related note, I kept trying to hug my dog yesterday. She's a good dog but she hates hugs. So whenever I wrap my arms around her, she must feel constricted or something and she goes "Grrr! Grrr! Grrr!" Ha ha. She looks so huggable but she hates it, poor silly Lily.
 
allie, hope your trip goes well and that you don't have problems.
cat, sorry about your SIL - similar thing with my sil recently, although she was the one that left and the ex has been stalking and they're both throwing their 4 kids in the middle of everything. it really stinks.

just got back from the endo. of course everything was normal. it always is with me. not that i really want something wrong, i don't. i just know there's something else going on.
fistula is frustrating. it's been doing alright lately. less stool. course yesterday i had burger kind. will not be doing that again. totally messed me up today and had a bunch of leakage.now the fistula is sore. i'm hoping it's because it was nice new healing tissue and the drainage irritated it. sigh. i really hate it. i would rather have half a dozen hemis and diarrhea than a fistula. is that sad?
 
Flower, it's not sad at all. I haven't had a fistula but they sound absolutely awful. I think I would take a half dozen hemis over a fistula too! And I'm sorry to hear your SIL is in a similar situation. I feel bad for the kids involved in stuff like this. It's just not fair that little ones have to be in the middle of such ugliness. Ugh.

Speaking of ugh, well, my dog had her surgery. All went well with the surgery itself. Last night we put her bootie on over her bandage to keep it more secure, and when we put her in her crate we put the cone collar thing on her so that she wouldn't chew on her bandage during the night. When I got up this morning, I found that she had somehow gotten the cone off, the bootie off, and the bandage off. Her stitches appear to be intact and her foot wasn't bleeding or anything, but that's still really annoying and worrying! Hubby's taking her back to the vet yet again (her 3rd visit this week) to get her looked at to make sure she didn't do any damage and to get her re-bandaged. Hopefully she keeps this one on. I already tightened the cone collar so I'm hoping she can't get it off now!

So yeah, the stress from my dog's issues and my S-I-L's divorce drama has gotten to me. I poo'ed over 10 times yesterday, the hemmies are still there and they're more angry than they've been lately, and with my last poo of the day yesterday there was some blood. It was bright red so I'm guessing it's hemmie-related. I'm pretty much recovered from my migraine the other day but I just feel stressed and run-down. I still have a cold and I'm not taking any meds for it as I don't want to trigger another migraine. I just feel blah. I'm going to rest up a lot this weekend, give my dog lots of hugs (and watch her like a hawk!) and hopefully at some point I'll get to go see my nieces & nephews and have some fun with them, hopefully take them away from their family drama for a little bit. It really gets to me when kids or animals are suffering and right now it seems like both are happening! :( If I can get my dog to leave her foot alone, and if I can visit with my nieces & nephews for a bit then I'll feel a little less stressed I think.

I hope everyone else has a good stress-free weekend and that all the pets and kids around you are healthy and happy. And of course that your tummies are happy too!
 
Wow, it's been quiet in this thread lately! I hope that means everyone is feeling well and had a good weekend? I'm feeling really well, I started taking psyllium husks 3 days ago and it seems to be helping my frequency issues! I had heard DustyKat talk about psyllium and saw it at the health food store and decided to give it a shot. It's soluble fiber but doesn't cause cramping the way that stuff like metamucil would - apparently because there's no additives or unnecessary stuff in it, just psyllium and that's it. I've been taking it for 3 days now, just a teaspoon in a glass of water once per day, and I went from having 4-10 BMs per day to now just having a couple. I had 2 yesterday and one so far today, and I feel good! No cramping and I don't feel constipated. Is this what normal feels like?? Even though I'm in remission I haven't felt totally normal, I think this is as close as I'm going to get! It's lovely. :)

I hope everyone else is doing well also! Or as well as can be expected. Who's got upcoming tests or appointments? Sunshine, did you ever get your results from that CT? Star, did you ever have that do-over of the MRI? Allie, how's it going on plaquenil and have you seen a rheumy there yet? Flower, how's the fistula today? How's everybody else?
 
Oh, and Sunshine - I just wanted to say, I watched your video and it was very good. I totally related to it and it was totally accurate about the things we all hear - but I do have to say, you were saying things like "but you don't look sick", but honestly hun, you do look sick. :( Maybe it's just because I know you're so ill but you looked pale and thin(ner than usual) to me. I can see in your face in that video that this illness is really taking a toll on you. I really hope you get some answers soon and get feeling better already! And I'm telling you from experience because my face was the same way when I was really ill. In fact I've scared myself a few times looking in the mirror because I didn't recognize myself right away and thought "Who is that??!!" and then realized it was me. I had lost all the color in my face and I was losing weight fast and had dark circles under my eyes and I just looked like a zombie. I have a co-worker from a different office who I don't see very often, I just saw her recently and she commented on how good and healthy I look lately and how the color is back in my face again and I just generally appear more healthy to her. I had briefly told her a long time ago that I have a chronic tummy illness so she knows I'm ill but I don't think that I had told her that more recently I'm in remission. She could tell though right away by looking at me. So, for those who aren't in remission - if anyone tells you that you "don't look sick" (or any of the other things in Sunshine's video) then they clearly don't know you at all and aren't worth the time of day!
 
the fistula's been ok the last couple days, thanks for asking.

i've been trolling the net.. as you do... and i'm wondering if i should have my adrenals checked.. i had my hormones tested, and they came back normal, but i still feel like something is still way off with me, and i wonder if it maybe is contributing to the crohns, which i'm still not even 100% sure is the right diagnosis.
even on the remicade my mouth has not cleared up at all. i keep it under control with a steroid cream, but it's still inflamed and white and if i don't keep up stuff the ulcers come back. my pelvic floor muscles are still sore if i do anything other than regular walking. if i pick up my son to put him in a cart i'm sore around my vagina and anus and butt for 2 days. and it's muscle sore. and i wake up multiple times during the night and can't get back to sleep. i have crazy vivid dreams. i get randomly crazy itchy in certain spots with no visible cause.
and i have weird menopause symptoms, but they're at the exact same time every day. if i have mucus, it's between 3-5 pm. i get hot flashes and horrible reflux/numb throat stuff going on at 10pm. it's like i can feel my hormones coursing through in my abdomen and under my arms. is that strange? i'm 33. i shouldn't be menopausal, but with regular periods.

sorry for the rant y'all. just wondering if any of you guys have similar symptoms or if i'm just a freak. :shifty-t:
 
hi cat! im so glad you're feeling good,.. especially with the BM's. nobody likes a sore bum ;) haha!! :poo:

ive been feeling ok too, just having a bit more gas than before.
my skin has been terribly itchy - and my arm still hurts from a blood test that i had 1 and a half weeks ago! its all bruised in the middle of my lower arm and my vein feels stiff all along my arm. weird... :confused:

anywho, hope you continue to feel well xx
 
Flower, those symptoms sound awful! It certainly wouldn't hurt to get your adrenals checked, it seems like they can cause a lot of symptoms including IBD-like symptoms (that's why I was tested for Addison's, which is adrenal insufficiency - my adrenals are apparently fine though). It should just be a simple blood test or two and no prep involved so it should be an easy process too. Have you had your ANA checked? That can test for a few different autoimmune illnesses, I know Lupus and RA for sure (they checked my ANA when they thought I had arthritis to see if it was RA - mine was negative and it turns out I don't have arthritis at all - and of course Allie got her diagnosis from a positive ANA). That is just a simple blood test too and your GP should be able to do it - my GP ordered my ANA test as well as the Addison's testing.

Bozzy, weird about your arm! I wonder if it got infected or something? After a week and a half it sounds to me like a call to your GP is probably in order. I hope it's nothing and goes away quickly!
 
my mother in law is a nurse, and she said it may be a touch of phlebitis.. ? i checked online, and apparently that can last 2-6wks. my poor veins are just a bit irritated by having so many blumming needles stuck in them! haha! it always takes 2-3 attempts to put a canula in my arm now. and when i was last in hospital - my vein in the right arm, gave up and couldnt have any more blood samples from it. pfft..
 
Hey everyone! We ended up not going on the trip...I was getting really worried and Stuart ended up cancelling it. We spent the 4 day weekend at home. Last night we tried to play a video game together and I started to cramp up, ran to the bathroom, and ended up throwing up and having D at the same time. :( It was AWFUL! I was sweating so bad my hair was soaking wet. I got it calmed down and went to bed, and it happened again this morning, but not as bad, and no throwing up.

Cat, thats awesome! I hope they continue to help. I saw on facebook the drama thats been going on with Lily, and I hope it gets better!
 
Allie, I'm sorry to hear your trip got cancelled. And it sounds like you're really not doing well! :( The only time I really ever throw up and have d at the same time is when I have a stomach bug. I have lots of d and nausea in a flare but I rarely vomit even in a flare. So hopefully yours is just a bug too and will pass quickly! Feel better soon, sending you a big hug.

And yeah, ha ha, for those who haven't seen it on FB, my dog is driving me nuts! She had her foot surgery and that went fine, but ever since she's been escaping from her bandages about 3x per day. I swear, I blink and she's got her bandage off and I have to put a new one on! We've been putting the "cone of shame" on her at night so that she can't chew at her foot or her bandage. This morning, I went to let her out of her crate and she still had the cone on, but somehow had gotten the bandage off anyway! Ugh! The worst though was yesterday, I tried taking her for a walk. The vet said short walks are okay as long as she has a waterproof bootie on over her bandage. So I put the bootie on and we got about a block away... and the bandage and bootie just fell off! I don't even know how that happened but for once it wasn't her fault it came off. She was walking on the grass so I think it must have snagged on something? Anyway, I freaked out because she's supposed to have a bandage on at all times, and here she was suddenly walking outside with no bandage and her stitches were probably getting dirt in them. I couldn't put the bandage back on, so I tried putting just the bootie on so we could at least walk back home. But the bootie slipped right back off again after a few steps, so I ended up just picking her up and carrying her home. Now, Lily pooch weighs nearly 50 lbs and I had already done my workout that day so that was absolutely exhausting! A cop was passing by and he gave me a weird look, I guess most people don't carry their 50 lb dogs around, ha ha. So, I told hubby to take her back to the vet yet again today (I think this will be her 5th visit since she hurt her foot!) and instruct the vet to re-bandage the entire leg. Hopefully if it's the whole leg and not just the foot that's bandaged, she won't be able to get it off so easily! Wish me luck, I definitely need it. :p
 
Flower, I don't think it would hurt to get your adrenals checked. There are a bunch of tests though and a lot of hormones have a diurnal rhythm so I wouldn't accept a single blood test as a definitive result. There are also challenge tests, and 24 urine collection tests that can give further info. look at info for ACTH and cortisol.


speaking of adrenals, my insulin challenge test is scheduled for Wednesday morning. I'm kind of worried about it, can't wait to have it over and done with. It's kind of a scary test imo. My vacation year starts again at the end of the month so I'll be able to schedule my gastric emptying scan. What feels like gerd/upset stomach/etc isn't going away, and it's really bugging me. nothing helps, and according to my last EGD my stomach is fine... woo fun.
 
thanks guys. i have had my ana tested and it was normal. the only thing that was off pre-remicade was crp.

allie, i'm so sorry for you hon! probably better you didn't go on the trip, it just would have been even more stressful.
 
Hi everyone, not been around since going through a bad patch. Last week wasn't good and was sleeping the clock round, and had a mini-flare early morning Friday (the kind where my guts suddenly decide they don't want anything in them!), luckily by the end of the day I was able to eat again. Had a funeral today, got the train and then a lift, now I know why I stopped getting the train routinely to visit family lol, but of course today was important so I did it.

I see Rheumy Wednesday so I can finally find out more details as to why I need to repeat the MRA (29th Feb). Going to be so dissapointed when I get a "pictures weren't good enough" :(

This has really thrown me, there I was coping with choosing treatment or new Hospital, and doing ok with that, and then this comes up, and I just know I am getting my hopes up for nothing.

Oh well.

On the plus side I am ordering a new cell/mobile phone in the next few days, it's not an i phone or even a smartphone as those are beyond my budget but a Nokia 2690 (pink) which I really like the look of and is an improvement on my current model. I only buy phones every 5 years or so and I really enjoy it when I get a new one, like a kid in a candy store :D The best part is it will be entirely funded by money earned through a cashback website- most of it free cashback or where I am earning a profit to do a subscription etc, got £15 just for a free Neflix trial, £10 for a £3 magazine trial etc. And money back on net shopping of course ;)
 
Cat, thanks for the comment on my video. I was just so tired of hearing people say all those things to us and it just really got to me so I had to get the awareness out there. And yeah I don't feel like myself. I feel like I don't have much of a self esteem right now, and it's hard. I have acne on my face STILL from the prednisone and it just won't go away. I'm using proactiv which is really strong but it's just not budging. My hair is really thinning out. I colored my hair last night (just to freshen it up again because it look so unhealthy and dull) and my boyfriend and mom commented that my hair is really long but i don't have much of it. My mom was freaked out how thin it has gotten. :( and yeah i'm really pale, i just don't feel well... as you can recall from when you were the same way. <3

My next appointment with Shands is a week from today! Monday the 27th! :) She will have all the results from everything and hopefully be able to know more of what's going on, i'm praying some stuff showed up!! But as we know, our bodies like to show things on their own time, not on doctors command. so we'll see!

Sometimes, I won't go to the bathroom for a couple of days, but then when I do go it's always D, like WATER. it's just so weird. I don't understand. I can go like all day one day and then not go very much the next but still when I do go it's D. I just don't want to eat anymore, I absolutely dislike this. I always feel icky after I eat. But if I don't eat, I still feel sick too. We just can't win here can we? lol..

Praying for you all. Keeping you all in my thoughts. :)
 
Sunshine, I'm sorry you're feeling so badly :( I hope your doctor can help you out next week. Have you tried nutrition drinks? I just got some in powder form the other day so that I can hopefully make it taste better.

(I'm sorry everyone. I'm not able to keep up with what's going on so I'm really out of the loop. I hope everyone is doing okay..)
 
Sunshine, I'm so sorry to hear about your hair. I had some issues with my hair falling out too when I was on Entocort, and of course my hair started going grey at age 29 right around the time I became ill. In fact my brother needed help dyeing his hair the other day, he's got such thick hair and mine is so fine and thin and graying. He was dyeing his hair black to be "cool" or something. I was like, "wait till you're old like me and you have to dye your hair just to get the grays out!" Then I remembered, I'm only 5 1/2 years older than he is. Oops! Even in remission I feel a lot older than I am.

Where was I going with this? Oh yeah, so back when my hair was falling out, Mayflower told me about Biotin and I gave it a try. It's a b-vitamin and you need to take at least 3,000 mcg daily for it to be effective for hair loss. It doesn't work for everyone but it works pretty well for me. I take 5,000 mcg daily. I still take it just in case - don't want to stop it and have my hair start thinning again so I just keep taking it. So you might want to give it a try, it can't hurt anyway, I don't think there are any side effects since it's just a vitamin.

Carrie, no worries. Pop in when you can, don't worry about not keeping up though. Some days I can barely keep up myself!

Star, fun! I used to have a pink phone, my current one is red. My current phone is also about 5 years old. I need to upgrade too! But like you money is an issue and I can't afford an iphone either. I know a girl who is on disability for RA and UC and a bunch of other illnesses, and she somehow can afford to upgrade to the latest iphone each time a new one comes out. I don't know how she can afford that!

I have to cut this short - hope everyone is well, hugs to those who aren't. I'll post more later!
 
Thank you girls. :) I hope I can get answers soon too and get some sort of treatment going. I'm a little nervous about treatments considering my throat DESPISES pills. So... not sure where this is going. my last visit with my doctor she did mention putting me on something like Humira Or Remicade. But, maybe she will have more info on monday with some results and stuff. I swear I'm going to cry if it all comes back normal, because I was SOO sick during that CT scan. it was the worst testing I've ever had done. EVER. But we will see.

I think I will try Biotin. It can't hurt like you said! Thank you! :)

I hope you are all well. <3 I know how you feel Carrie, I feel bad because I haven't been keeping up very well lately :(
 
Sunshine, I wish you the best of luck with your appointment on Monday! I hope you finally get some answers. It sounds promising too that your doctor is looking at possibly trying Humira or Remicade. It certainly sounds like you need some sort of treatment so whatever the case, I hope you can get on some treatment soon! It's so unfair that they let some of us get so very ill before they let us try meds. I know I am one of the lucky ones that I was "only" ill for a year and "only" lost 20 lbs before I went on Entocort and slowly got my life back. I really feel awful about those like you who are just stuck in limbo with no treatment and no answers and just get gradually worse all the time. :( I hope this limbo doesn't last much longer!

For those who remember me talking about my friend in Japan, he had his appendix out today (I think today - the time difference between here and there is so goofy, when it's morning here it's evening there and vice versa). He posted a one-word facebook update after the surgery - "ouch". I hope it was a "I just had surgery" ouch and not a "my guts still hurt in spite of surgery" ouch. I really hope this surgery cures his digestive issues!

I'm doing okay but I exercised my abs too hard the other day and they're still sore. I am always nervous about working out my abdomen area as I don't want to anger my guts, but I decided to push myself and now I'm paying for it a little bit. I won't push myself too hard to work out my abs again! There's such a fine line with testing my limits and crossing the line completely, you know? And the line seems to be ever-shifting. I can do so much more in remission than I could when I was ill but there's still a limit.

Oh, and my dog went back to the vet, yet again, to get re-bandaged. She managed to not damage her stitches at all even though she's escaped from her bandage so often, so that's very good! The vet re-bandaged her and she kept that bandage on overnight in spite of hubby not putting the "cone of shame" on her! In a little over a week she can get the stitches out and should be back to normal then. I can't wait! :)
 
Sunshine, I am so sorry about your hair's getting thin. That really sucks. I hope that biotin can help, although I'm sure getting your gut problems are a huge piece of the puzzle. Totally mention it to your doctor, if you haven't already - that was a symptom that got one of my docs to run a whole slew of blood tests, which I know you've already had done. Turns out in my case, I had low ferritin levels, which I'm being treated for to help with the hair loss - you don't have to be full on anemic to have issues with hair loss where iron is concerned. My ferritin is slowly going up through supplementation (it's still not at the level where hair should be regrowing, and that's after a year of supplementation!!). Anyway, I feel your pain in that regard, and I hope that the answers to your gut problems nip the hair issues in the bud as well.

Cat, I hope your dog can keep it together long enough to not mess up her stitches. :) That does not sound like fun.
 
May, can I ask you more about that? I don't think I've ever had my ferritin tested but they always tell me I'm not anemic. But I'm always cold and my hubby thinks I probably am a bit anemic (I don't eat red meat, don't eat a lot of spinach, and I can't take iron supplements as they upset my stomach too much - the only significant iron I really get in my diet is from cooking with a cast iron skillet!). I've got my yearly physical with my GP scheduled next month and I'm thinking of asking my ferritin to be tested. What supplements do you take - is it just regular iron supplements, or are there special ferritin ones? Are they prescription or OTC? Have you tried liquid iron? I saw a liquid iron supplement at the health food store but it was really expensive, like $40 for one smallish bottle! But if it works then it might be worth the cost.

And thanks for the comment about my dog, she really has been a pain lately! I started a thread a few days ago in the Members Only forum about her, as my dog was actually was on Cipro for a week to prevent further infection in her foot, and the Cipro gave her d. Fortunately a daily dose of probiotics in the form of a couple spoonfuls of plain fat-free yogurt seems to have stopped the d so that's one obstacle down! Now I just have to deal with her bandage issues for another week or so until the stitches come out.
 
This is the supplement that my dermatologist put me on:

http://www.naturesplus.com/products/productdetail.asp?productNumber=3770&category=20

It's basically an iron heavy multi vitamin, and I have had no GI upset at all from it. However, for some reason, iron usually doesn't bother me. It has turned my stools green, but I've never suffered from GI upset from iron supplementation. It's very difficult to absorb iron from supplements, but these are slowly but steadily increasing my ferritin. It was up to 57ish the last time it was checked about a month and a half ago. That's up from around 17 in August of 2010. I've never tried liquid iron. I take the iron with vitamin C and I also take liquid chlorophyll b/c somewhere I read that can help with iron absorption too...There are lots of food sources of iron - i read that eating meat (not necessarily red meat, but any meat) can increase your body's ability to absorb non-heme iron (the kind from veggies) by like 30%. So even if you can't eat much red meat, chicken with iron heavy veggies will help too. I've heard that the iron from cast iron is negligible, but I do that too, just in case. :) In fact, I've got marinara sauce sitting in mine right now.
 
Oh my, now you have my attention Mayflower LOL.
The part about your ferritin being up from 17 in August ? Was that as low as it got? Was that the number that had your doctor prescribe supplements ?

I ask because Gab (my daughter with Crohn's) just had bloods done on Friday. I am waiting for her GI doc to call with the results, but I have access to her tests results online, so I have looked at them myself. Gab's ferritin is only at 9 (norm range 11-307). She has been anemic (HgB anemic) off and on since she was little, but right now that is within normal range at 13.1 (norm: 12.0-15.5). When you're anemic from ferritin is it always considered ACD? (anemia of chronic disease) or no? I've read that if you take iron supplements for ACD then it can be quite dangerous, so maybe I've answered my own question there, seeing as how you take iron and you're ok.
Hmm...I will be very interested to see what her GI says about these results. He's probably waiting for the results of her stool samples to come in before her calls. She stopped taking her iron supplements after her last surgery in December because her HgB levels were finally ok. (ferritin wasn't checked at that time ~ and I'm not quite sure why it was this time either )
 
Thanks May! Iron supplements turn my stool green or black as well, even spinach itself turns my poo green. Back before I became ill, I would regularly eat spinach salads for lunch and my poo was always normal colored back then. As soon as I became ill, I continued trying to eat the salads, but suddenly my poo started turning funky colors and the spinach just didn't quite sit right. Since then I have rarely eaten spinach. Iron supplements always cause upset, even now that I'm in remission. I tried the "gentle" iron, I think it's called SlowFE, as that's not supposed to cause as much upset, but it still hurts my stomach sometimes for days. Not fun! I would imagine then that the supplement you take would probably also cause me some upset. I still might try the liquid iron though. I'm going to wait and see what my GP says and ask for a blood test to see where my ferritin is actually at. It might be more affordable too if my GP prescribes liquid iron so I'll see if that's a possibility.

There was a thread recently in the Diet section about cast iron skillets and it seemed to indicate that you actually can add a fair amount of iron to your food just by cooking in a cast iron skillet. Since reading that thread, I don't use my teflon cookware at all anymore. I can't tell if using the cast iron skillet is actually helping or not but it makes me feel better than using teflon anyway. Oh, and I do eat a lot of chicken and turkey and fish so at least I'm absorbing a bit of iron because of that then! I use ground turkey as a ground beef replacement in many recipes, it's quite good with the right seasonings.

How have you been lately, May? How's your family and your brother? My bro is *still* living with me although he's been a LOT better lately. He stopped taking drugs and acts like a sane person again! He got a good job and is looking for an apartment. He actually realized that he wore out his welcome awhile ago and has been voluntarily paying us more rent money to make up for the inconvenience. He hasn't picked a fight with me in months - it's like a whole different person! More money, less arguing - I'm actually not in a rush to see him go which I never thought I would say! I do want my guest bedroom back, but extra money each week is really nice and my stress level is down with the constant bickering gone. (The dog and my sister-in-law are now causing the stress, ha ha.)
 
Crohn's Mom said:
Oh my, now you have my attention Mayflower LOL.
The part about your ferritin being up from 17 in August ? Was that as low as it got? Was that the number that had your doctor prescribe supplements ?
Click to expand...

I just looked at my bloods, and in August 2010 it was 16.5 and when my GP retested it in November it was 17.2. At seeing that it was 16.5 my derm told me to make sure I was taking iron supplements, but didn't specify a type (it was actually the PA at my derm's office). I was taking a supplement that had 28 mg iron b/t the initial two checks. When my GP tested it and got 17.2 she had me add a prenatal with iron. It was checked roughly a year after the first check and was around 37. That's when my dermatologist (not the PA) told me to start taking the Hemaplex, so I scrapped the prenatal and only take that. In three months, it went up over 20 units on the hemaplex. I have a physical scheduled in May with my GP and she'll check my other numbers. My HGB at the initial checks in August and November were 12.8. It's never really over that, and often under, but I've not been told I am anemic.

When you're anemic from ferritin is it always considered ACD? (anemia of chronic disease) or no?
Click to expand...

I do not know the answer to this. Like I said, I have not been told that I am anemic, just that my ferritin is low and needs to be brought up.

I've read that if you take iron supplements for ACD then it can be quite dangerous, so maybe I've answered my own question there, seeing as how you take iron and you're ok.
Click to expand...

But I don't have ACD to my knowledge. :) And the wiki link said that if you have ACD you should have high ferritin. Maybe someone more knowledgeable about this stuff will chime in on this?

@ Cat: SlowFE is ferrous sulfate, and Hemaplex uses some amino acid chelate form of iron. So it may or may not cause you issues. I wonder what form of iron is in the liquid. I'll have to check that thread out about the skillet, b/c I do have several and like to use them.

We eat a lot of ground turkey as well. Unless we're eating hamburgers, we generally use turkey in lieu of ground beef for everything else.

My brother is doing pretty well. His wife says that he is still doing great drug-wise and has no interest in being around his former "friends." I know that was a huge part of his relapses in the past - not effectively separating himself from that lifestyle and people who were using. I'm glad your brother is doing better. That must be a load off your mind. I feel awful for your sister in law. That is a terrible situation.

@ Sunshine - I second the idea of a haircut. I had my hair past my shoulders when it started shedding big time and cut it off to my chin or above. Amazing how much better it looks now. Sometimes a haircut is serious therapy. :)
 
I cut my hair short because I was losing it.. it does make a difference in how well you can cover it up. Also, less getting knots and tangles that pull out even more when you comb it.

I've heard about these partial wigs that come as bangs and as a halo like thing that adds body to your hair. I'm curious about the halo one. Haven't seen one yet, but it sounds promising.
 
SunshineSmile said:
I just made a new video... THINGS PEOPLE SAY TO TUMMY TROUBLED PEOPLE! I'm sure you can all relate! lol it was making me upset so I made a video on it lol...

http://www.youtube.com/watch?v=47ESEq5BAr8&context=C386e9a5ADOEgsToPDskJ3iA1na86V90ANyQMBeafN
Click to expand...

OMG- Sunshine- that was so funny to me, because it is so true- and so ridicoulas because people really DO say those things- UGH. There is a 24-hr flu bug going around and people I work with are getting it, including me, and yes, it was absolutely terrible, but I was like, OK you guys, take that and multiply that times 20, and then mutiply that times 365- that is how some people I know with Crohns and stomach problems feel ALL THE TIME- you get it now? :yfrown: Good :thumleft: Now shut up and don't say anything else stupid around me. :ylol:

Hugs to all my sicky friends! :ghug:
 
Hi Shan, glad to hear from you! So true about multiplying the symptoms and then times 365! I hope you're doing well other than the 24 hour bug? How are the meds and everything going?

On the subject of hair, I'm thinking of cutting mine short for the summer too. It's sort of medium length right now, it's past my shoulders. I might cut it above the shoulders in a cute little bob cut or something like that. I like having longer hair but I do think I look better with shorter hair (at least I get more compliments on my hair when it's shorter).

So, it's been a stressful couple of days! I just mentioned in my post from yesterday that my brother hadn't found an apartment yet - well, yesterday evening he announced he found an apartment and is moving out of my house this weekend! Goodbye extra money, hello peace and quiet and my guest bedroom back. But the really stressful thing is that I found out yesterday that my aunt was in a terrible car accident. She'll be okay but injured her neck and could have easily been hurt a lot worse. This is my aunt who's the Crohnie. It was worrisome especially when I didn't have many details and didn't know if she'd be okay or not. I didn't sleep last night from worry and stress, and my body isn't happy with me today. Not good! I found out this morning that she'll be okay though and I plan on de-stressing like nobody's business once my brother is all moved out. I already have tickets to a comedy show Friday night, so my weekend will involve laughter, then lots of sleeping and resting, tea, yoga, more resting, a bubble bath or two, cleaning and organizing and moving my things back into my guest bedroom, and more resting! If anybody else causes me drama or stress this weekend they're liable to get smacked! Ha ha.

I hope everyone else is doing okay! And that your lives are relatively stress-free and drama-free.
 
note to anyone who gets their adrenals checked - bring a clean outfit with you for an Insulin Tolerance Test. By the time we were done with the testing, my clothes were soaked through with sweat. I feel like butt, but at least it's over!
 
Cat-a-Tonic said:
On the subject of hair, I'm thinking of cutting mine short for the summer too. It's sort of medium length right now, it's past my shoulders. I might cut it above the shoulders in a cute little bob cut or something like that. I like having longer hair but I do think I look better with shorter hair (at least I get more compliments on my hair when it's shorter).
Click to expand...

Same here - I like the versatility of longer hair but I know my hair looks better short. I have a square jawline and so for me it's been a challenge to find a hair cut that is both flattering to my face and makes my hair look better, seeing as it's thin and wants to do nothing but hang there. When I cut it people were so complimentary that I was thinking, 'Wow, it must have looked awful before!' LOL

Glad your bro is moving out. Here's to a nice relaxing weekend.
 
Carrie, I'm not familiar with that test, but it sounds awful if it makes you that sweaty! Sounds like the night sweats I get when I flare. I don't even sweat that badly when I exercise! I hope the sweatiness ends up being worth it and you can get a usable, worthwhile result out of it. How have you been otherwise? I check your blog every so often. I really should start a blog or something too. Are you on Pinterest? I know Allie is on it and so are a couple other people I know, it seems rather geared towards crafty stuff.

May, I have the opposite, my jawline is so not square. It's not even in a straight line, it's like the wimpiest jawline ever. I hate it! But I can totally relate to flat, fine hair that just hangs there. And when my hair is shorter, it does seem to have a bit more bounce to it, I would imagine that's why I get more compliments when it's short. When it grows out, all I hear is stuff like "Your hair is getting long!..." and that's it. Not, "Your hair is getting long and it's cute/pretty/looks good!" But when it's short, I hear stuff like, "So cute! What a good look on you! Love the haircut!" So yeah, I probably will cut it off again soon. I like having it at least long enough to pull back into a ponytail, but when it gets too long it starts to get caught in stuff (the car door and the seatbelt roller-upper thing especially) and it's almost to that point now, so I will probably chop it off again soon.

Can I just say, I love exercise! I hit the gym hard a couple hours ago and feel significantly less stressed now. I feel so much better now. I feel good too because I had crocheted a few scarves and donated them as part of this project at work where a co-worker is collecting scarves and hats to give to cancer patients. I got a lovely thank-you note for the scarves I had made and it makes me want to make and donate more! It feels good. I'm collecting boxes for my brother to pack his stuff in too which also feels very good! Ha ha :) It's amazing how little stuff like that can make me feel so much more positive.
 
I am on pinterest. I linked it on my blog the other day in the right-side bar.

This was way worse than night sweats. It all came out within like 10 minutes. I've been hypoglycemic before, but this was sooo much more severe. At one point my hands were shaking so bad they looked like they were vibrating. When I was younger I danced 30+ hours a week. Within 10 minutes of beginning barre work in ballet my leotard would be soaked to my waist as would my tights. I had to change between classes sometimes. It was bad like that. My pants were soaked the whole half hour drive home. I had a tank top and tshirt. I wisely took off the tshirt before we began which gave me something mostly dry to change into (I had been using it as a pillow but it fell away at some point.) I felt really ill and tired for most of the day, my arms hurt a lot. The first iv failed so both arms were stuck, and almost all of the fingers on my right hand were pricked multiple times. The vein where the iv was hurts so much. Anyway, this test is supposed to be a gold standard for adrenal/pituitary so one way or another it will tell me something. (I hope!)

I've been same as usual. I've been taking my tramadol daily which keeps things generally solid, sometimes too solid. The weather has been making my migraines and body pains act up. My stomach still feels like it's burning, and Babydoll just jumped onto me to give me loving. I can't remember what I was saying.

Pinterest seems interesting, but I haven't delved in too deeply. I need to update my blog. I've been neglecting it.
 
Hi all. Had lots reading to catch up on since I last looked at the forum!

Sunshine - I have fine thin hair...and it's been spiky short to long and back again. I agree, when it's even bobbed at shoulder legnth, it gives the appearance of being thicker. And after having it shorter, when it grew out again, it came in thicker. I also used nioxin hair products and they helped a bit. So maybe you could have a 'makeover'. Beginning a new treatment plan (hopefully soon) and starting fresh with a cool hairstyle too! It could be a fresh new start of a new chapter in your life!
I've noticed that i'm also losing quite a bit of hair in the past few months. Every time I shower, i'm having to swipe over the drain to collect it. I didn't realize that this may be related to my GI issues...but then again, everything seems to be inter-related!

Cat...I was taking a liquid iron supplement during the summer. The reason I chose liquid was b/c it's supposed to be much easier on the tummy and it's apparently more readily absorbed by the body. The kind I took was pricey too- Floradix Floravital Herb Liquid Iron, I think it was called. And they make a gluten free version also. Do a bit of research...I know I read up somewhere, but forget the numbers...they compared the percentages of iron absorbed by the body when taking the pills vs. liquid form. It was a significant difference. Which may be why it takes so long to bring the iron levels up...when ppl are taking tablets. Sorry I can't remember where I found it. Maybe start by looking up the liquid iron on the Floavital website.

Ally...I sure hope that things start looking up for you soon.

Carrie...can you tell me more about that test? What did they do? I still haven't gotten the results from my pee test and I think that's what they were testing with that; my adrenal levels or something.

I have my MRI next Friday. Then I meet with the opthamologist the week after that. I had some bad days last week, but am on the mend again. Went to see my osteopath today, after not going for 6 months. She can't work on me when i'm actively flaring; it'd just make everything worse. I have tomorrow off work, so I'm thankful for that cuz I usually am sore for days after she works on me. But it's worth it. She puts everything back into working order.

I've been on moringa olifera for a month now...it's kinda plateaued for me. I noticed a huge increase in my energy level at first. And I had many good days in a row. Now it's as if my body's not absorbing it. The other day (an 'off day') 15 mins after I ate, and was of course in the bathroom, it went right through me. My poop was green - the shade of the powder in the capsules. So, obviously my body didn't absorb it. I'm back to eating white bread, bananas, peanut butter, ensure & whatever else to counter the D. It's quite the balancing act, i'm finding.

I hope everyone has enough energy to get through your days, whatever each new day brings. Cat, your due for some positivity in your life. Good things must be around the corner for you. You've been through alot emotionally lately it seems. I believe some positive karma is coming. When it does...relish in it!! :thumleft:
 
Insulin Tolerance Test (ITT) is used to assess adrenal and pituitary function. I had a normal blood cortisol result with a high blood ACTH. My 24Hr urine had a low cortisol. I asked my endo for more testing, because I'm not satisfied with the results. He doesn't know why ACTH is always high, BUN is always low, and a variety of other abnormal results.

ITT tests how your body reacts to stress. They cause this stress by injecting you (after you've fasted) with insulin to drop your blood glucose to < 40. They take note of your symptoms and reactions throughout the test and pricked my fingers every 5 minutes at one point. Going into hypoglycemia is supposed to cause the body to release growth hormone, cortisol, and acth in a predictable pattern so they keep taking blood (from an iv) to measure how they all change over a 2-3 hour period.
 
Hi Cat :ybiggrin:

I hope everyone is feeling better today. I have been doing a lot better, the meds are finally working really well, and I only a little dizzy in the morning when I first wake up- then it goes away!!! I feel a lot better. I did kinda get off balance this past weekend and bumped my knee on my coffee table- I have huge red/purple bruise and it is really sore, but all in all, I really can't complain too much. The worst thing tho, kinda funny :ylol:, about getting better is that since I am no longer vomiting every day, I have gained 10 lbs! Ugh-:thumbdown: Oh well- I am on a special regime of eating low fat/ high protein/ high fiber, and I have been doing some yoga, pilates, and strength training. I feel less stressed, starting to fell more toned, and I am sleeping a lot better too. I gotta get this weight back off. At my sickest I weighed 115, so I am trying to get back to that weight, but doing it the healthy way this time!! Thanks for checking on me, Cat. :cat:

I haven't posted much, because I kinda feel guilty that I have been diagnosed and I am on the proper meds, and I am starting to feel really good-I hate it because I know all you guys are still in Hell and suffering and I feel great:yfrown: It's like I feel bad for that:frown: I am thinking of you guys all the time and hoping you guys can get some relief and start to get you lives back too!!

Oh and by the way, I joined a support group for Meniere's, but I got off of it pretty quick. Those guys are :boring: So you guys are stuck with me!! :wink:
 
Shan, I've been doing yoga and strength training lately too, I love it! I feel so good after lifting weights and I love having muscles. :) And, strangely enough, I was also down to 115 lbs at my most ill. I'm up to 145 now, eek! Like you, I'd like to lose a bit of weight but do it the healthy way. Ever since I've been in remission, I just can't lose weight like I could when I was ill. Not that I'm complaining too much, like you I'm feeling quite well these days. I'm on steroid suppositories right now for hemorrhoids and the steroids are making my appetite go a bit crazy which is making it really hard to lose the extra weight.

And that's kind of funny that the Meniere's support group was so boring! You can hang around here with us all you like, and I'm glad to know that we're the "fun" group, ha ha. :)

Ever, thank you! I hope good things come my way soon, or more specifically that good things happen to the people (and pets) around me. My aunt's condition got upgraded to more serious - I was told this morning that she cracked a vertebrae in her neck, but tonight I found out she actually shattered it, so she's officially got a broken neck and needs surgery. :( She's not paralyzed though and can move all her limbs and fingers and toes so she should be okay. Scary though! It could have easily been so much worse and a broken neck isn't exactly a minor injury anyway.
 
Shan, please don't feel bad! You are a success story and I love those myself. Another member got what looks like a dx and cure (stones in his appendix) and I was so happy when I read that. Gives me hope! :soledance:

Rheumy appointment went well. It was technical issues with the MRA, not enough dye was given and the problem was compounded because the cannula was in my foot and not my arm. So fingers crossed next week's repeat goes better (I am attending Rheumy Day Unti prior to my scan to have the cannula put in this time). If not that's still good as will help with PET scan application.

My CRP is back in the 20's, after a few normal readings. He gave me a steroid shot in my shoulder to try and help the pain. Endo next week to tie up a loose end in Rheumy's words.

I see him again end of May and he will keep in touch via letter with results and any other tests.

Considering asking Gastro to discharge me as the May appointment clashes with my Gastro one, and they are not going to do anything for me. And no way could I cope with a colonoscopy prep in this state anyway!

Naturally dissapointed the MRA repeat wasn't due to them finding something and wanting to be sure but trying not to let it get to me.

Totally OT but been buying more garden supplies and ordering plants I think I can manage to plant, I am so impatient for the weather to improve so I can get out there, I love gardening despite how tired and sore it leaves me now lol, I can't not garden. And I have started some sunflowers off, every year I try and fail to grow these but I am determined 2012 is going to be the year. I can grow everything else except darn sunflowers!

:rosette1:
 
Sooo yesterday I was laying down and get this shooting pain from my lower right area near my hip bone. It freaked me out so I went to feel the area of where it came from and when i pushed on it it shot the same kind of pain to my belly button area... :( and same kind of feeling on my lower left area too. and not to mention my left and right side above my belly button are quite "sore" feeling too.... :( this is crazy.
 
Hi Everyone!

I have been gone for sooo long. I haven not been diagnosed with anything stomach related, not even IBS. My doctor has told me that my stomach symptoms arent severe and he doesent want to label me with an IBS dianosis. I have been diagnosed with somatization disorder and I was doing really well on antidepressants but I stopped cold turkey in October. I wanted to keep everyone updated and drop in to say hello :ybiggrin: I have been reading everyones stories and I am surprised at all of the changes but also saddened that some of us are still in limbo. I have been sick lately with stomach cramping, chest pains, and headaches. I was doing great and thought everything was gone but it seems like I am stuck with this beast for life :confused2: I have accepted things and just move on now rather than dwell on it and become a hypochondriac all over again. Back to antidepressants, sleeping pills, and hyoscyamine. I look forward to continue posting and being part of a group that understands my pain and is so empatheti:heart:
 
Sunshine, so if I read that right, this is a new pain, and when you push on that spot in the lower-right the pain gets worse? That could be your appendix. If it gets worse, or changes, or if you get anything like a fever or vomiting - please go to the ER. You don't want to mess around with appendix stuff. I was friendly with a girl in high school (I was a dork, she was popular, but she was like the only popular person who was nice to me) and her appendix ruptured but either she wasn't in a lot of pain or she ignored the pain. 6 days later she was rushed to the hospital in septic shock, she nearly died and it took forever for her to recover. I recall she came back to school like one week before summer vacation started and she had gone to the hospital in the winter. So if it gets worse, by all means do not wait until your appointment on Monday, go get checked out ASAP!

Star, what kinds of things do you grow in your garden? Is it primarily flowers or more fruit and veg or a mix of both? I have a tiny garden in my yard, but I do not have a green thumb. I like plants that come back year after year without me having to do anything, ha ha. I planted some peppermint 2 years ago and it came back last year so hopefully it will come back again this year. I plant tomatoes every year and those usually do well. I planted snap peas last year and those didn't do well at all, I had about 10 plants and got about 4 pea pods total, ha ha. I planted pumpkins the year before and they started out well but then disappeared! I think someone must have raided my garden and taken them, that's all I can figure. I have a small fence around my little garden which keeps the rabbits out so it wasn't rabbits. Last year, I had a resident toad who made a home in my garden and he ate all the bugs which was great, I hope I have a toad again this year. :)

Dayz, that's a bit shocking that they won't even give you an IBS diagnosis! Have you gotten a second opinion? It sounds like that might be in order as your current docs sound pretty clueless as to what's actually going on with you! You're not a hypochondriac either, you are legitimately ill. Don't let them tell you otherwise!

I'm doing somewhat better today. Exercise and a good night's sleep help so much and I don't feel as stressed now. It's kind of like, the stress is still there, but I can deal with it more easily after exercise and a good sleep, you know? The level of stress hasn't changed but my ability to deal with it has.

I hope everyone's doing okay or at least hanging in there. Big hugs to those who aren't doing so well!
 
Thank you Cat! It's hard to tell where it's coming from. If it gets worse I will go to the hospital. I feel like it could be my ileum area, but it's just hard to tell, last few times I pressed on that area it's still sore. but my whole abdomen is sore, so I don't know. I'm supposed to get my period tomorrow too... so this could be a rough weekend. :( I do hope that I get it before monday, because monday i'll be in a car for 2 hours driving to my appointment so I surely don't want to have my period pain PLUS my normal pains... oh goodness. my last period last month was TERRIBLE. I could of bet a million dollars that I had Endometriosis. It was awful, like I just sit there shaking and nauseous and crying. it's just awful, so I really hope that I get it before my appointment because that would be bad in a car ride.
 
Sunshine, that sounds awful! I hope your time of the month isn't nearly as bad this time around. Have you mentioned this to your doctor? I'm not sure if there are other ways to check for endos besides laprascopy but it's definitely worth mentioning at least. Do you use a heating pad for the menstrual pains? I do and it makes things feel a lot better. For the car ride, you might want to look into getting a portable microwaveable thing to put on your stomach. I have this microwaveable stuffed animal, you just put it in the microwave for a minute or two and it's really nice and warm and keeps the heat for over an hour. And no cord so you can take it with you in the car. I found mine in a local store but it looks like Amazon carries them too - here's a link (for some reason the first listing, the cow, doesn't appear to be microwavable but the rest on this page are)
http://www.amazon.com/s/ref=a9_sc_1...cozy+hugs+microwavable&ie=UTF8&qid=1330035733
I have the lamb myself. :) It's just lovely for taking in the car.
 
As an Amazon Associate we earn from qualifying purchases.
I will definitely mention it to my doctor again. because it's just awful.
and oh my gosh! I HAVE to buy a microwaveable stuffed animal!! That sounds like the BEST investment ever! I'm going to check it out right now, thank you so so so so much!! :)
 
You're welcome! I love mine, I hope you love yours too. I see on facebook that you got the lamb too. :) I got mine at a store here called Menard's, I think it's a Midwest thing, I don't think they have Menard's stores outside of this area. It's actually a hardware/tools/home improvement type store but they have random things like candles and stuffed animals sometimes too.
 
Hi guys...i just needed to vent a bit before I run off to work! I was up AGAIN last night from 12:45-4am with substantial pain in my guts. And they were wrenched up...again. I SO want to have a solid sleep. I only got back to sleep at 4 and had to be up again by 5:20 b/c I start work at 7am today. 7-3:30...makes for a long day when I don't get enough sleep.

Wish me luck! And I sure hope that everyone's start to this weekend is better than mine!! :rosette1:
 
May thanks for your input on the ferritin :) I think I confused myself and got it backwards thinking low ferritin was ACD, instead of high. Anyhow, Gab's IBD nurse called yesterday and indeed she is considered anemic once again and back on iron supplements.

Sunshine I hope you finally get some kind of definite answers at Monday's appointment ~ and I hope your new heated pillow pet helps with your ride over ! How cute ~ what a great Idea Cat :)

Cat ~ I've been keeping up with all of your post, and so sorry that you've had such stress lately :( I hope it all calms down for you soon so your poor guts can get a break too.

Star~ I saw your post in the venting section and that's awful what happened with your Grandfathers (?) funeral ! I can't imagine how that made your family feel having to wait so long ! :(

Hope everyone else is feeling ok and has a great, pain free weekend :) I'm always reading and keeping up in here, just not always sure what to say. Hopefully everyone will get some answers very soon!
 
I have one of those microwaveable things too! They work wonders. :)

Ever, I hate when I have rough nights like that! My D has been especially bad lately and it has been interrupting my sleep all week. So I've been SUPER cranky and lazy all day. :( I hope you are able to get a good night sleep tonight!

Things really haven't changed over here. This week I have had severe D, my period, and a cold all at the same time. As my husband put it, there was something leaking from almost every opening. o_O How gross is that? lol. I had a super productive day on Tuesday, but I have felt awful the rest of the week and I have pretty much done nothing, which is not helping my self esteem. My husband has spent time online finding these websites on self esteem and chronic illness, but they haven't really helped. My rheumy appt is March 1st, then a GP follow up appointment on the 5th, so I'm hoping they can both get me a solid treatment plan to start crawling out of this hole I feel like I've gotten myself stuck into. o_O
 
Ever and Allie, add me to the list of people who aren't sleeping well. Last night was another toss-and-turn kind of night for me and I'm just zonked out today. Not sure if I mentioned it in this thread, but I started trying psyllium husks like Dusty's daughter takes. It was working okay but I decided to up my dosage yesterday (I've been taking 1 teaspoon per day and took 2 teaspoons yesterday). Big mistake! I ended up so bloated and crampy and just felt yucky the whole day. That and the ongoing stress made me not sleep hardly at all. Blah.

Today is a stressful day too because my aunt is having surgery on her broken neck today and that's obviously worrisome. Please keep her in your thoughts. This is my aunt who is the Crohnie, she's my favorite auntie and I'm so worried about her. She's not paralyzed thank goodness but a broken neck is certainly nothing to sneeze at and neither is surgery to repair a broken neck. Today is going to be stressful until I hear how the surgery went! Fortunately I have tickets to a comedy show tonight and I am really looking forward to it. I soooo need to laugh and get some of this stress off my back!

Tracy, thank you. How have you been lately? Any closer to a diagnosis yourself? What about your sons - I think you had mentioned in the past that you have two (?) sons who are also having some digestive issues? How's Gab doing? Is she enjoying no longer having a stoma?

Allie, during my worst days I found that just making myself act like a normal human in little ways did wonders for my self-esteem. On really bad days I would still make myself take a shower, do my hair, even paint my nails. And put on clothes, even if for a little bit, just so I wasn't in pajamas day in and day out. It really did make a difference in my emotions even if I knew I was just "faking it" at being human if that makes sense. I still didn't feel quite human but I would look in the mirror and wouldn't see someone terribly ill, I'd see someone quite ill but still making an effort. It just made me feel like I hadn't totally given up on life, I guess! It's so easy to get depressed when you've got a serious illness and it takes effort even to get dressed or shower when you feel crappy every single day, but it is worth that effort. Hang in there, and I hope you make good progress with the upcoming appointments and can get back on track and really feel human again! Big hugs to you.

I hope everyone else is doing okay and can have a lovely, restful, relaxing weekend. My brother is moving out this weekend so I will definitely have a bit of stress off my shoulders just from that! Our dad is coming down on Monday with his van to help move the bigger stuff like bro's mattress, so by Monday night my bro should be completely moved out. :) Yeah!
 
hi everybody... im still in limbo at the moment just waiting for my biopsy results in the next couple of weeks.

its a bit embarrassing... but has anybody had any bladder incontinence?? i go through periods in my life were i wet the bed. its awful. but when it happens in the night - i cant stop the flow! so it goes everywhere on my way to the toilet. :( sorry for the info...
my husband is great, and doesnt mind that it happens.

i joints have been constantly aching and i keep getting flashes in my left eye - like a light bulb just switched on and off.. and its getting more frequent too. i saw the optician today and couldnt see any problems.. but to check with my GP as it can be related to other body changes.

i just feel so down right now, especially with the bed wetting. ive had it all my life - so its not pregnancy related (and i had a c-section) :(

Cat, how is your SIL doing? xx
 
Bozzy, the flashing lights in one eye could be migraines. I've had migraine auras that are just like that, although mine only happen in my right eye. Do you get a headache or nausea or sensitivity to light/sound, anything like that along with the flashing lights? Some people just get the visual symptoms without the actual headache - my grandfather is one of those lucky people. I never got migraines up until I got this IBD or whatever it is, so I'm assuming the two are probably related. But I do get both the visual auras and the headache along with sensitivity to light & sound, so mine are full-blown migraines. Anyway, it's definitely worth asking your GP about.

I've had bladder issues all my life too. Up until puberty I was a bedwetter (so were my brother and my dad, so it seems to be at least partly genetic). And in college I started getting frequent, recurrent urinary tract infections. I don't know why, and I don't know if any of it is related to my guts or not. I haven't wet the bed as an adult although I've come close a few times. I hope you can figure it out, it sounds very unpleasant to not be able to stop the flow. :( And like having IBD-type symptoms isn't enough on its own! You poor thing. Big hugs to you!

My S-I-L seems to be doing a bit better, thanks for asking. She seems a little bit more upbeat. I think keeping busy is helping her not dwell too much on the bad stuff. 4 kids is more than enough to keep anyone busy, plus she works and teaches aerobics classes too! Apparently she and her ex are trying to keep on good terms too for the sake of the kids so that's very good.
 
Im so glad she seems to be coping with it all. fingers crossed the dust can settle soon, with all the correct boundaries in place etc..

well i have suffered with migraines too - hormone related with me when i was on the contraceptive pill and then when i was pregnant. i always get tunnel vision, auras, nausea and just want to keep my eyes shut... but with this i have no headache? hmm.

i was the same in relation to bladder problems, i always had frequent UTI's and cystitis as a child. and every time of the "month" i get the stinging sensation again.

i just seem to have lots of extraintestinal manifestations, but not a lot of stomach pain.
:(
 
I too have a minor bladder issue, which started at the same time as my tummy problems. I have a pee, wipe, pull up my knickers and stand, and then sometimes a few drips come out. Now I could sit on the toilet for 30 minutes after finishing and those drips would still happen! I wear thick pantyliners 24 hours a day (I usually have heavy discharge anyway) to help.

Sorry to any guys reading!
 

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