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Crohn's Disease Forum

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Do you have to have a referral to go to a GYN? Doesn't being a woman mean you NEED a GYN for yearly checkups and stuff? I would keep that appt unless there is some reason you want to cancel it. He/she could still be useful in helping you out. Plus he would be looking for things from a different angle. Just a suggestion. :)
 
yeah, I was told the only thing I could do without a refferal is a well woman exam, which I had a few months ago. The only thing she could really do is refill my birth control since mine expired while I was in Germany.
 
Hm, I guess I never thought abt it. I just know I didn't need one initially to start going to one. But then that was only for well-checkups and bcp rxes. I guess if you're having issues other than that, then you might need a referral bc of insurance or whatever. I'm glad your appt today went well. It's always nice to have a great doctor in your court. She sounds like a good one.
 
Yeah, they warned me when I got the appt. :) She does seem really nice and I hope to keep her for my primary care as long as I can.

I hope everyone had a good day!
 
Hey star, sorry to hear that the case is out of your hands. Like I said I'm still very new to this and at times I'm a bit too optimistic, sorry if I gave you any false hope or made you feel worse. I'm still optimistic that next year is goin to be a better one though, it has to be! Especially for those of us stuck in this hell-like limbo state. I hope you're at least feeling a little more human if nothing else? It's so easy to let all of this get on top of you but we really cant allow that to happen, it's a definite laugh or cry situation so I try to find any humor I possibly can, even if it's just laughing at myself!

Allie, really pleased that your GP appointment went as well as it did. It's almost unbelievable how good a compassionate and calculated GP/doctor/surgeon can actually make us feel. If only the whole profession would sit up and take notice of how just a little bit of caring and actioning makes us feel. They should also realise how easy it is to have the opposite effect when they are their usual belittling selves! Really pleased that they're getting things done for you, it's a wee step in the direction you wanna be heading at least!

Hello to the people I missed too, hope ya'll had a goodun', we actually got some sun here, woo hoo! Didn't see much of it but better than looking at rain I reckon! Take care all.
 
I hope everyone is doing good!

Allie I am so glad you found a good doctor they make a world of difference. I am always on here reading how everyone is doing and it makes me so happy when little things like this happen because with all these negative results and false hopes its nice to hear!
 
Too true Dayz well said! There's not many silver linings out there but its good to know there are some! I hope things are ok wih yourself too?
 
Ah the funeral service for my friend's Dad is being held in the town where I live so hopefully Thursday I should be able to go, and it's the afternoon, which means a higher chance of success.

Virus is still hanging round, I now have a proper, old fashioned streaming cold. If only I could be sure of an end to it!

I though last year that this one would be better... so I am not going to comment on the next lol. But I do genuinely feel I am getting somewhere now. Even if the new tests do not lead anywhere I will have to make a decision on the immuno-suppressant trial next year I feel... and if I did do that and it didn't work well I would force the Hospital to move things along quicker than they are now.
 
so my tb and hep panel came back negative. am starting on remicade this week. just have to get with scheduling at the hospital. definitely have a firm crohn's dx now. not that i want it, but it is nice knowing what's wrong and having a treatment plan.
 
Allie, I hope the next 2 weeks goes by quickly and that your Rheumy turns out to be a good one! I didn't know that CRP can be normal for other types of AI illnesses but that makes sense. I don't know much about Lupus but I recall you saying there's a blood test (or several blood tests?) and that's really all there is to diagnosing it? I have to say, it would just totally suck to have gone through prep after prep and GI test one after another, and then to get diagnosed from a blood test after all of that madness. (Edited to clarify) Not that it would suck to get a diagnosis, but it would suck that you went through all of that when the answer lay in a simple blood test all along. I felt that way when I had my Addison's test - it was like, if this comes back saying Addison's, I drank a gallon of laxatives and had a camera shoved up my bottom for nothing!

Star, sorry to hear your virus is still hanging around. I can't tell if I'm coming down with a cold or if my allergies are just horrible lately. For the past few days I've been coughing, and yesterday & today my sinuses have been horribly congested and I have a throbbing sinus headache too. No cold or allergy medication is really doing much of anything - I tried Claritin this morning, and I tried Dayquil this afternoon. Nothing! I feel for you, whatever this is, it's making me misereable. My head is pounding and I can't breathe through my nose at all (I have a messed up nose anyway but I can usually breathe through my right nostril - not today though!). Yuck!

Crag, I love your optimism! I've always been more of a pessimist, but I'm trying to change that. I do have to say that this year has been much better than last year, and I also am hoping that next year is even better. I hope it's better for you too and for everyone in the club! Everyone here deserves some answers and relief.

Flowergirl, glad to hear your diagnosis is firm now, I'm sure that's a relief to know for sure what is going on but also a bit scary. I hope the Remicade works wonders for you! I don't know a lot about it, but my best friend has been on it for awhile and she likes it. Keep us posted on how you're doing! You're going on Remi because you have a fistula, right? I hope that heals - I also don't know much about fistulas, but they sound just awful. Good luck with the Remi!

Dayz, glad to hear from you, how are you doing lately?

May, how was your vacation? How are you doing?

How's anybody doing that I may have missed?
 
Thanks everyone. :) IT IS a silver lining...I'm not over here feeling guilty over the tramadol, thinking I might be a hypocrite, or anything like that anymore. Its crazy how one doctor's visit can completely boost your self-esteem. I don't want attention for being sick, but at this point I really think I need it. I hate how invisible illnesses take so long to find, since doctors think they should see it on their patients. Actually, with the rashes and mouth sores I'm having, mine isn't as invisible. Maybe showing pictures of these helped by showing this really isn't all in my head.

Cat: Ha ha yeah, it would be kind of funny. I was so sure it was GI related though, and at least I now know that it if it is IBS being aggravated by another autoimmune illness (or just another autoimmune illness without IBS, lupus can cause D and abdominal pain), that nothing is seriously wrong within my colon or small intestine. My GP yesterday brought up colon cancer first thing, and I told her it had been ruled out already. Lupus is a series of blood tests, mainly a test of ANA. CRP is supposed to be normal with lupus. Lupus is hard to diagnose, just like Crohns, and Rheumys mostly have to go by symptoms and the ANA test, but I know there are other tests they can do to see more. I have heard some Rheumys don't DX Lupus until it severely attacks a major organ, which I think is really dumb, because at that point I think they are way too late, IMO. But I have also read that it is common to get all the blood tests done, then get put on pred without the DX to see if it helps, which makes me hope that my Rheumy tests a medication with me as well. I have heard such good things about this Rheumy, and my GP said in the medical field in this town he has a really good reputation. One online site had reviews from patients, and they all said that he helped them as much as he could, and if it wasn't in his area of expertise he did research personally to try and help them anyway. Wow! So I hope he can finally figure me out and make me feel better! :p

One of the things my GP did yesterday (which I forgot about, we did so much) is press on all of the trigger points for autoimmune joint pain. It all hurt really bad. I didn't realize it was more than my wrists...

Glad your DX is set in stone Flowergirl!
 
Good luck Allie! You have it coming to you. You've been through plenty and need to have an answer. I used to work with another teacher who had Lupus. She had frequent problems with her digestion. I guess Lupus can really affect your whole system. She had her healthy times too. I wishing you all the best. :)
 
Vacation was good, Cat. Thanks for asking. No bowel problems, which was actually surprising bc we ate out a few times. And I remember vividly having issues both times we were there before. I've had some loose bowels this week but I'm on the rag, so that's what's going on there. You know what, though? I've actually been feeling reflux on and off lately. Don't know what that's abt. I took a Zantac yesterday and it did nothing, then took two tums before going to bed and that finally stopped it.

How's taking the Zantac working for you? Is it helping? Asacol still treating you well?
 
May, I think Zantac is helping a little bit. My GI had instructed me to take my Prilosec all in the morning (I had been taking one 20mg capsule in the morning and the other in th evening) and to take Zantac just before bed. I did that for a couple of days but the reflux got much worse again. So I went back to taking Prilosec morning and evening, and I'm taking my Zantac with lunch. That actually seems to be working out really well. I also take Tums as needed and I haven't been popping nearly as many of those since I started with that schedule.

I'm not doing well today though. I have the worst sinus headache, the same headache I had yesterday, and it's a little worse today. I don't think I have a cold, this is either allergies or it's because of the weather/barometric pressure (I've been coughing and had a sore throat too, but it feels like it's all related to sinus drainage). I don't think it's a side effect of Asacol. The weather's been so screwy here lately, lots of rain and low barometric pressure, which always seems to give me a bad sinus headache, and sometimes those headaches do last for days. Nothing even takes the edge off, either. I've tried Tylenol, Tylenol Sinus, Dayquil, and Claritin - no relief from any of them. I just have to wait for the weather to change, which supposedly will happen around Friday.

Guts-wise, I'm doing okay - like you, my period's about to start any minute now, so a bit of cramping and looser stools, but nothing awful. I do think that Asacol is helping. I passed a teeny bit of mucus the other day, but nowhere near my normal amount. Assuming this headache isn't an Asacol side effect, I still haven't had any side effects. So far so good! It's kind of a pain having to remember to take so many pills - Prilosec first thing in the morning, Asacol with my morning Ensure, Zantac before lunch and Asacol with lunch, Prilosec before dinner and Asacol with dinner, and Amitriptyline before bed. I feel like I'm taking so many pills, and that's not even including the dozen or so supplements I'm also taking! If it helps, though, it's all worth it.

Allie, I also hope that your Rheumy does test a medication on you to see if it works - and if you try pred, I hope it works wonders for you like it did for me! I was fortunate enough to get the "euphoria" side effect, I felt like a million bucks the whole time I was on it. I literally wanted to break out into song and dance (and I can NOT sing or dance well at all). I had super tons of energy too. It was great! If it gets you relief, it's worth every side effect (I only experienced some mild insomnia, but felt so awesome that I didn't really care very much). Fingers crossed for you that the Rheumy can figure you out and get you proper treatment and relief already! And in the meantime, hang in there. How's the blanket coming? Mine's coming along great! I love working on a blanket when the weather is cold, my new blanket is long enough now to cover my lap while I work on it which I love! Warm lap blanket. :)
 
Sorry you aren't feeling well today Cat! :(

My GP's assistant called me today with my blood test results. Everything was fine except my B12 is still low! So I am to start 1000mg B12 tablets that you stick under your tongue a day. She plans on checking it again in a couple months, and if it is still low she is going to put me on injections.

I'm not doing too well today either. My pain was super high last night, and my husband and I got in a fight (yes, even with the time difference and distance), and that just made it worse. So I ended up on Tramadol when it causes insomnia, so I'm working on only a few hours of sleep today. Yuck!
 
My follow up with GI is tomorrow. Very nervous about it.
Also, I've been having this strange symptom and wanted to know what you thought about it? I've had it since june, but just now really paying attention to it. It usually happens if I have been laying down and I get up. After about walking 5ft I get hit with nausea, awful headache and my vision gets very blurry, after about 20 seconds I am better, but my ears burn, for another 20 seconds or so. Then I feel fine and keep moving. It happens almost every time I get up after lying down. It's not like a light headed rush or anything like that, as it doesn't happen right when I get up. And it can also happen out of the blue, like at a grocery store. It happens several times a day, and it is beginning to worry me a bit. Anyone experience anything similar? Was thinking of putting a big post out about it. Will bring it up with doctor tomorrow too.
 
Good luck tomorrow, Dahlface! Keep us posted, I hope you get some answers! As for your weird standing up symptoms, I have no idea. I often get the dizzies when I stand up, but nothing like what you described. Does it still happen if you get up slowly? I really don't know what that could be, I hope your doctor has some ideas about it.

Allie, I take those sublingual B12 tablets too. I like them - I've never been a fan of swallowing pills, I wish more medications came in dissolvable tablets. I hope they help you! Out of curiosity, I googled "low B12 and lupus" and got quite a few hits back, so it looks like that also fits with the lupus theory.
 
Cat and Allie,

I hope you both feel better real soon- sorry you both feel so bad. :eek:

For the past few days I have been feeling some better- hope it continues. :ycool:

Hope everybody else gets to feeling better real soon too. Have a great rest of the week! :ylol:
 
dahl - i'd get your blood pressure checked. when mine is really low i get that whole light-headed almost like a headache and dizzy, and sometimes it is after i've been up for a minute.
 
Made the funeral today, was a lovely service and wonderful to see my friend again, even on such a sad day. Just a shame I couldn't attend the wake also, as my aunty lives right around the corner from there. Of course they all understood but I still feel bad. I nearly said yes, but figured actually going to the service was overdoing things, never mind going onto the wake.

Still a bit snotty from cold but seems to be getting better. Shall we also say the reason my throat started to hurt again is clear from what has been coming up there... Took 2 max strength cold relief pills before I went lol and they did work well.

Know I am going to feel awful tomorrow but I had to go.

Have been brave (and surprisingly hungry) enough to venture out of my food comfort zone a few times and so far so good. You know how it is when you want to hurl at the sight of your safe foods because you've had them so many darn times! A bit of pain from the pizza but not enough to stop me eating that again at some point! And we shall see how tonights meal goes. :thumright:
 
Star, I'm glad you were able to make it to the funeral. And it sounds like you're getting brave with your diet! That's great, I hope you're able to eat some favorite foods without consequence. It seems like for me, every time I'm brave and eat something unsafe that I end up paying for it, even in remission. I hope that's not the case for you though! Just the thought of pizza has my mouth watering, yummmm. I can't eat regular pizza any more, but hubby sometimes makes me a special gut-friendly pizza that's got not a lot of sauce and the sauce isn't too spicy, and it's made with goat cheese. I wish I could have it more often, but goat cheese is like twice as expensive as regular cheese, so it's an ocassional treat. Enjoy your pizza and I hope your tummy likes it too! :)

I'm doing a bit better today. We had more rain storms here this morning and my awful headache came back! I went to the gym yesterday afternoon, which oddly made my headache go away for a bit but it also made my reflux angry. Hmm. But the headache's on it's way out again now that the storms have blown through. It definitely seems to be tied into the weather, I think it's the barometric pressure, and maybe allergies too. Lots of people here have been complaining of sinus issues this week so it's not just me, and it doesn't seem to be anything contagious either.

I'm going to my GP tomorrow to discuss my hip arthritis, specifically to talk about me getting further imaging of my hip to determine the type of arthritis I've got and see if it ties in to my gut illness. Wish me luck!
 
cat- glad you're a little better. i love goat cheese. i wonder if that would be better on my bowels, as regular dairy seems only to be tolerable in small doses right now.

first remicade infusion on monday morning! i'm excited and scared.

:shifty:
 
Good luck Flowergirl! I hope the Remicade works well for you!

I'm the same way with dairy, I've been lactose intolerant for over a decade now. I can still tolerate butter and ice cream, but most other dairy is a big no-no for me. Cheese and milk seem to be the two dairy products that are the worst on my system. But yeah, I discovered that goat cheese doesn't affect me negatively like regular cow cheese does. I found a local grocery store that sells goat muenster, which is just delicious! I wouldn't recommend other goat dairy products though - I tried goat yogurt once, and it was so gross I nearly barfed after one mouthful. I do soy yogurt and almond milk these days.
 
Thanks everyone.

Cat, I didn't know low B12 and lupus could be related. I googled it too after you said you did, there were some interesting stuff!

Star, I'm glad you made it to the funeral! I eat my trigger foods sometimes too, because I get tired of pasta very fast. Today I had a cucumber chicken wrap, and it had a ton of lettuce on it (the dark, leafy stuff) so I know thats going to hurt. But it was so good!

Flowergirl, good luck with the remicade!
 
GI appointment went well, I suppose. I'm still in this club, because he says I'm a mystery. There are signs of early crohn's in my terminal ilium, but since all my bloodwork is normal he can't give me an actual diagnosis. He's starting me on Entocort and see if I respond. He was very informative about all the tests we've done. I like him a lot. I just don't know what to think now. Hoping the Entocort will work.
 
Dahlface, you might want to get a second opinion - something like 10% of crohnies will have normal bloodwork all the time, even in a horrible flare. I would think that seeing signs of Crohn's would trump the fact that your bloods look fine!

As for Entocort, I was on it for 7 months and it was what helped get me into remission and also to regain the weight I'd lost when I was so ill. I did get a side effect from it, in the form of chronic headaches, but 25 mg of Amitriptyline took care of those. All in all, I am really glad I was on Entocort, and I hope it works well for you too! It's fairly mild (much, MUCH milder than prednisone) so you shouldn't experience too many if any side effects. It works specifically on the terminal ileum/right colon area, so it sounds like it's a good med for you to try. The only downside is that it can be really expensive if your insurance doens't cover it. I have decent prescription coverage but I still ended up paying $75 per month for Entocort - if you have no insurance it's well over $1000 per month. Eek! So I hope you've got good prescription coverage!
 
allie - i'm sorry i haven't read all your backstory, but have they tested you for celiac? i only ask because my mom has celiac/fibromyalgia/sjorgens/lupus. celiac is another one that's really difficult to diagnose sometimes because you can only get so far into the small intestine for biopsy. it took my mom 20 years to get diagnosed, and had she been diagnosed earlier, probably wouldn't have had the other things, or at least not as severe.

geez, between my mother and my father (crohn's), did i really think i would get away with NOT having an autoimmune disorder? :ytongue:
 
yeah flowergirl, I have been tested for celiac. :) They have ruled out everything GI wise, so they are trying to say IBS. But I have weight loss, extreme abdominal pain in one place, joint pain, mouth ulcers, cracked corners of my mouth, and so many other symptoms that don't match IBS. So my GI said it looks like it might be another autoimmune disease, and he said lupus is one of them. My GP agrees. I really thought it was small bowel crohns because of where my pain is, the D 8 - 14 times a day, etc, but with the pill cam normal I really don't know anymore. I'm going to see what happens with autoimmune tests come back as, like ANA for for lupus.
 
Flowergirl, I'm the opposite - I've got no family history of any IBD except for one great-grandfather who had UC. But he died in the early 1950s, and there's nobody alive in my family with any IBD whatsoever. No other autoimmune illnesses either, except for one very distant branch has a few several-times-removed cousins with celiac. But I've tested negative for that on biopsy and I'm sure I don't have celiac. Lucky me, I guess I'm the black sheep of the family because I've got IBD and nobody else does.

I've often wondered, if I indeed got IBD genes from my great-grandfather, how on earth did those genes skip a couple of generations and lay dormant in my dad and grandma, but then get activated in me? It's a real mystery! Especially with my dad, he treats his body soooo poorly - no exercise, lots of stress, and his diet is pure crap. Junk food and fast food, nothing healthy whatsoever. My grandma's the same way, not as much stress but no exercise and lots of fast food too. I'm the one who always tried to take care of myself, exercise and watch my diet. How I got IBD and they didn't, I will never know!
 
Ugh! Went with my dad to pick up my script and my insurance is refusing to cover it! I'm so angry. I contacted my dr to see what I can do about it. Why does this have to be so difficult?
 
Flowergirl, congrats on starting remicade!! good luck with it!! Let us know how it is!! I'll hopefully be starting treatment this week too!

Allie, Hope they figure out what's going on with you soon!! Your doctor sounds great though! best of luck! Keep us updated! :)

Dahlface, That's so weird that your doctor saw "early signs of CROHN'S" but doesn't think it's CROHN'S... makes no sense. I really hope the medicine works though! And that you get a second opinion, because his opinion sounds a little iffy. Let us know if your meds help!!


Hope everyone is doing well today!
 
Ick, I passed something really horrid today, I don't know what made me look at the TP but I did. Looked like a black, mucusy, clot, yuk. Of course I flushed before I thought to have a look in the toilet bowl!

Still not feeling great, I have alot of snot and junk in my throat still, and I am worn out after recent events etc. Appetite has vanished again, oh well it was real nice while it lasted.

Another week and it will be a month since Rheumy appointment so I will email then to ask for an update.

EDIT: I went again and looked this time, one piece was almost entirely black, and there were like a few trails of black mucus.

I'm having quite bad abdo pains too. Quite likely I will go to A&E tomorrow, see how things are, as never had that type or as much of blood.

:frown:
 
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Aww Star, I hope you feel better... sounds like you've been doing badly. Prayers and thoughts headed your way!

I'm feeling bad too :( I fee like really...like right now at 1:20 AM I need to feel bad again, last night I didn't sleep until 7AM this morning... and tomorrow is going to be terrible enough with the drive to jacksonville, plus doing the prep in the hotel room I have to do for the lower double balloon enteroscopy! ughhhh :( It's going to be a rough few days... I think I may even be at the mayo clinic until late this week.

Keeping all of you in my thoughts, I really hope everyone has good tummy days this week! <3
 
No more of that blood thank goodness, some abdo pain but only slightly above normal levels so not worth a trip to A&E.
Think I might email my GI this week with a copy to Rheumy, that blood really was different to what I have had before. Even though I have no faith in GI dept he probably ought to know what happened.

Sunshine, I really feel for you having to do prep when you are feeling so rough to start with!
 
sunshine - good luck this week. hopefully it won't be too bad. i've done just what you're doing, and if you can afford it, get in a nicer hotel. it will make a world of difference to have a slightly nicer bathroom and comfy bed to sleep in. of course it sucks you can't take advantage of the breakfast, but steal stuff from the buffet that you can pack with you for later. :)
 
Sunshine and Flowergirl, good luck to both of you! Flowergirl, I hope the Remicade works wonders, and Sunshine I hope that DBE clarifies things enough for your doctors to start you on some treatment. Keep us posted on how everything's going!

Star, I'm sorry to hear you're doing worse and having dark blood. Please do let your GI and rheumy know about this, dark blood is supposed to be more worrisome than red blood. I hope it's just a one-time thing and doesn't happen again! Hang in there. Any news yet on the surgeries?

I'm doing okay in spite of being stressed. Asacol is working, I can feel it. I feel an improvement and a calmness to my guts that wasn't there before. But I'm stressed - I am worrying again that my brother might have an IBD. He started keeping a food journal! He says it's an "everything journal" but he's particularly noting everything that he eats. It worries me, especially because he once told me that he "pooped black stuff". I'm afraid for his health. I know that siblings have the highest chance of getting IBD if another sibling has it. I'm probably worried about nothing, but still - it's now confirmed that I have some form of IBD, which means he's the next most likely person to get it.

I'm also stressed because of hubby's job situation. As some of you know, he recently got a part time job. It's just on the weekends. But when he applied for the job, he was misled as to what it was actually going to be. He's got a degree in art & animation, and he was told that he was mainly going to be doing Photoshop stuff like retouching photos (the job is at a photo portrait studio). But, instead, they're mostly having him do stuff like cashiering and answering the phones. He hates it! So he's been applying for other jobs, and he's got an interview on Wednesday at a place that sounds really promising! I really, really hope he gets this job. I'm on pins and needles! The interview is for a full-time job, doing animation and art, at this laboratory place. Basically making animations to explain certain processes that they're doing at the laboratory. Hubby actually has experience doing exactly that - he used to have a freelance gig at a place that made educational science videos for high school kids, so hubby's already done quite a lot of animations explaining various chemical reactions and so on. So, wish us luck! We really need him to get this job so that he can quit the crappy photo place job!
 
That job sounds ideal for him Cat, fingers crossed!!

No news on surgeries, I doubt the laprascopy letter has even been typed up yet lol. But Heamatology got theirs weeks ago so hoping to hear something about that one. I am expecting copies of the latest letters through in the next few weeks.
 
star- hope everything comes back for you soon. sounds like you need help soon.
sunshine - hope you're doing well with your balloon thing and all the travel.
cat- good luck for the hubby job. i'm sure he'll find something that's more up his alley.

i had my first infusion this morning. everything went well. no reactions or side effects or anything yet. am still a little nervous about having a delayed reaction or something, but i'm kind of a worrier, so.. other than that, am doing ok. we'll see if it works.
 
Hey Cat,
Sending good luck your way for your hubby- hope he gets the job so he can quit the other one- nothing is worse than working at a place you hate, plus if it is full time, that sounds even better! Keeping my fingers crossed. I hope your brother finds out what is wrong so he can get treatment. Glad you are starting to see an improvement with the new meds- hope they continue to work for you! :thumright:

Just when I think I am starting to feel better, I get sick again... this time I feel like I have another sinus infection!!! Gonna go to the doctor tomorrow morning so I can get some meds- Lord knows I can't afford to miss any more work. I feel so awful- feel like I have fever and my head is hurting SO bad- it is all stopped up! Feel like my eyeballs are gonna shoot out of my head and hit the wall!! :yfrown: Yuck- hope I can get some good meds that will work fast and maybe a shot!

Sunshine- good luck with your test- hope all goes well and you get a good plan for treatment! :rosette2:

Hope everyone else I missed has a great week- and vey little tummy issues! :ybiggrin:
 
Hi Shan, glad to hear from you! Sorry to hear you're having sinus issues, I was having the same thing last week. We had storms all week and for some reason it seemed like I was hit with a combo of allergies and an awful barometric pressure headache. I literally had a sinus headache for about 5 days straight. Then in the news I read that most "sinus headaches" are actually migraines. But I usually get auras before my migraines, so who knows! At any rate, it was awful. But the weather's warm and sunny now and my sinuses are fine again. I hope your sinuses clear up soon too!

Flowergirl, glad to hear that the first infusion went well! I think that delayed reactions can happen but are pretty rare, so you're probably out of the woods. Many people do fine for years on Remi, so hopefully you'll be one of those people. I hope it does the trick and heals up that fistula!

Star, I hope you hear back on the surgeries soon. It seems like everything there takes so long and it also seems like everything is based on letters! I've seen several posts from other people in the UK too talking about how their doctor needed to send a letter here or there for whatever reason. But you've said that you've emailed your doctor, so they must have computers? Is letter-writing just the norm over there and computers are only used for certain things like patient emails?

I am doing well and in a bit of disbelief! My hubby usually makes me dinner but he hadn't made anything last night when I got home from work. So I looked in the fridge and saw all sorts of delicious salad fixings - mixed lettuce, tomatoes, cucumbers, avocado. Yummmm! So I had a big delicious salad with lots of ranch dressing and was sure I'd pay for it. I had one bout of d that wasn't too bad, and a little bloating & gas, and then... nothing! That was it! I can handle small salads, but usually if I had a big salad, especially one with lots of dressing, I'd pay for it for a couple of days with d, pain, nausea, bloating, etc. But today I'm fine! I think it must be the Asacol. Now I'm wondering if I should try some of my other unsafe foods to see what happens! Oooh, I'm feeling dangerous. ;)
 
Hey everyone! Sorry I haven't written in awhile. I've been reading, just not responding.

So I am really starting to worry. Yesterday I had a rather large BM due to the constipating effects of my tramadol, and I've been bleeding heavily ever since. Yesterday morning my first BM was covered in blood, completely. Then the TP was soaked. It was bright red. I took tramadol for the pain and to get the BM's to stop (I had a couple more after that and they were so painful I was screaming). Later that evening I went to the bathroom and had no BM, but bled very heavily, a stream into the bowl and the TP was again soaked. Then this morning, another big painful BM (not solid, fluffy) with tons of blood. I looked at anal fissures online on webmd, and they say they are common, and blood is common, but not on the actual BM, and my BM's are soaked in bright red blood. My rectum is throbbing like nobodys business too. :( I hate talking about this but I don't know what to do at this point. Has this happened to anybody? Did you go see someone about it or did it heal on its own? I'm afraid if I call my doctor she is going to tell me to go to the ER, because she said I need to go if the bleeding gets worse or if I develop a fever.

Other than that I'm in the same pain and other symptoms. I'm really hoping this Rheumy can help me out.
 
allie - i am so sorry hon. i'm new to all this, but i really think you need to see a dr. lots of blood isn't something to be messing around with. i have hemis and skin tags and occasionally i'll have a little bit of blood on the tp, but... .
maybe someone else can be of more help. i'd call the dr in the morning though. :redface:
 
I agree. That sounds like too much blood to ignore. When is your appointment? If it's not tomorrow, then I think you should at the very least call your GP, or go to the ER, as much as you don't want to. Take care of yourself!!
 
Cat, that's great about the salad not giving you a lot of grief. Woohoo! Go Asacol. Long may it keep you in remission!!:thumright:
 
I know I seem to cry the ER wolf all the time guys, its just I feel like I'm always on the edge of going. My Rheumy appt is on the tenth, so Monday. I just don't know what either the ER or my GP will do. :/

I agree with May Cat, thats great! :)
 
If you don't stop bleeding by tomorrow and it's still significant, you atleast need to call your doctor. I don't think you're crying wolf, but bleeding heavily to me is definitely a cause for concern. Bc really, you don't know why you're bleeding. Has it let up at all?
 
Allie, I agree that you need to at least call a doctor if not go to the er. I hope you feel better soon. *hugs*
 
Allie, I'm with everyone else - at the very least, please call your doc, and a trip to the ER might be good. At the very least, they could test your bloods to see if you're anemic or deficient in anything due to the amount of bleeding. With the pain and bright red blood you described, it sounds to me like it might be a really bad fissure. I get little fissures from time to time, it hurts and feels like a little cut and I get a bit of bright red blood on the TP when I wipe. But that's it for me, it's never mixed in with the poo or anything like that. I don't know what the ER could do for a fissure - I suppose if it's bad enough, stitches might be in order? Or some type of prescription cream to keep the area clean so that it can heal? It's worth a shot anyway. Hang in there, and please let us know what you decide to do and how you're doing. Thinking of you and sending hugs!
 
Thanks guys. I haven't had a BM since yesterday morning, and I haven't bled anymore, thank goodness. If I do bleed heavily again when I go I will call my Dr. I agree with you cat, it seems like a bad fissure. :(

I hope everyone has a good day!
 
Thought I would say this exact same thing happened to me about 3 weeks ago. A stupid amount of blood was coming out every time I sat on the toilet, even when not going #2. It went on for 5 days and I know my iron droppped drastically during that time. I knew it was a fissure, as I get them from being constipated too.
I never went to the doctors for it but I'm going tomorrow just to talk about how things are and what I should do next.
It's a mighty scary thing to bleed that much. If you start to feel tired and bruising easily (I bruised like crazy for a week after this ordeal) I would go to the doctor just to see how your levels are. I also got super nauseous and so dizzy I fell off the can twice.
Why I didnt go to the doctors? I dont know, I'm very stubborn and don't like to admitt anything is wrong with me, nevermind my with my butt!!!
Good luck!
 
Allie, I hope that fissure (if it is indeed a fissure) heals up quickly. Mine usually heal within a few days, but then again mine have never been large fissures (knock on wood!). Have you tried anything on it? A barrier cream should at least keep it somewhat clean and protected. I'm sure I've mentioned this before but I love Calmoseptine! It kind of numbs and cools the area too so the pain is lessened. Anyway, I hope it heals up on its own and quickly too!

EnviroChick, sorry to hear that you recently went through something similar, that sounds awful! I get the dizzies horribly when I flare up but so far (again, knock on wood) I've never fallen off the toilet. I bruise easily all the time, even when I'm not in a flare, I always assumed that was just me. Do you get bruises that seem to appear out of nowhere? I swear I must sleepwalk or something, I'll frequently get an awful-looking bruise and I'll have no idea how I got it! I would think that I'd remember bumping into something with my shin or whatever, but I don't! Right now I have a purple bruise in the middle of the top of my foot. I always wear shoes except when I sleep, so it couldn't have happened during the day as far as I know - perhaps I am sleepwalking??
 
I get bruises that I can't remember how I got, too. I figure it takes them a few days to show up, so that's long enough to where I forget if I bumped my leg or something. But that is an odd place for a bruise. You would think you'd remember dropping something on your foot or something. Who knows? I think I am losing my mind the older I get, and I'm only 30 so I have still got a ways to go...
 
I go back and forth with what to call a particular symptom. I'm wondering if any of you have similar issue(s) and what you may call it or describe it as. I always feel like the doctor has no idea what I really mean.

dizziness, vertigo, zapping, shocking, disorientation... it'll be like all of a sudden I'm a few inches out of myself and then back in. sort of like someone stopping fast at a light, you didn't expect it, and you went forward and the seatbelt locked and sent you back into the seat? Sometimes it has more of stereotypical dizziness component. It's always at least mildly distressing, worse depending on how severe and if it keeps happening.

I've been really constipated lately (taking my tramadol regularly). It seems like this is happening to me more often, and when I am going to the bathroom sometimes I feel like I'm going to fall over, and/or I get a kind of burning pain(?) all the way down to my toes, up to my head, sometimes down my arms.

it really bothers me!

maybe it isn't all related, but for some reason I feel like it's all a similar issue manifesting slightly differently.
 
carrie - could it be hormonal? or maybe an eye problem? dunno.

i will say that sometimes when i go to the bathroom it's almost like i get chills right before i go. it's a very odd sensation. before i had problems that only used to happen when i had a stomach bug or had to throw up or something. but now it happens more often. almost like a full body flush and then a chill.

so odd what our bodies do.:hallo3:
 
it doesn't cycle like it's hormonal and I have hormone issues. it also has a little bit of a lightheadedness component (we just went to the store. it was terrible.) when it keeps happening I get nauseous and upset, like it just did in the store now. on the off chance it was low blood sugar (I take metformin to help with the above mentioned hormone issues.) I got some candy, but it didn't make a difference. its so annoying... I think it's neurological or balance related. I don't think it's blood pressure related, because it doesn't just occur when I'm getting up, but also occurs when I am already walking but turn quickly, either my whole body or just my head, sometimes just my eyes.. :(
 
Carrie, I get dizziness which seems to be related to low BP and low sodium. But I also get a bit of what you described, a feeling of being outside of myself for a bit and disorientation. I have noticed that mostly when I'm exercising, when my heart rate is high. Today I was jogging on the treadmill and that happened - when I snapped back to it, I had to steady myself so that I didn't fall off the treadmill, and it was only then that I realized I was really tired and I had to stop jogging and walk. I also got that when I was on the exercise bike, but not as bad. It only really seems to happen when I do cardio type exercise - not sure if it's related to heart rate or BP or what. It hasn't ever happened when I do non-cardio like weight lifting.

Flowergirl, I get horrible chills both before and after going to the bathroom when I am in a flare. I never get a fever in a flare, but I sure feel like it - awful chills, shivering cold and can't warm up - but when I take my temp, it's either normal or just a little bit low. It's odd! But it only seems to happen when I flare.

May, I hear you, I'm only 31! We're too young to have any of these health or mental issues!
 
i'm 33. does that make me the den mother? everyone on this board is so young (and pretty good looking). it makes me a little sad that people so young have so many problems. but i guess most people get symptoms starting in late teens/early 20's.
i was a late bloomer, i guess. :tongue:
 
I'm 37! :yfaint:


I'm feeling a little bit better after taking a bunch of pills. not awesome, but not freaking out. (xanax, phenergen, tramadol, and fiorinal) they haven't all kicked in yet so I have hope.
 
I beat ALL of you...I'm only 22 O.O

Carrie, I am constantly dizzy/light headed. The edges of my vision are always fuzzy as well. The other thing that happens to me if when I am in panic attack, or really not feeling well, when I close my eyes my body parts seem smaller or larger than they really are. I know that sounds weird, its hard to explain. But for example, my arms will feel huge, while my chest will feel tiny. If it spreads to my lungs I have trouble breathing. I have to open my eyes to snap out of it.

I haven't bled any today, thank god. Haven't had a BM either, which I think it good since the damage can heal. Hoping it gets better from here.
 
You're ALL babies- I am 42!!!

Sometimes when I am really sick, I get that light-headed feeling too- like I am floating out of my body and I am fighting to get back in. It is very scary actually! I hate it.

Cat, I went to the doctor, turns out I have a major sinus infection and an ear infection. No wonder I feel so bad. :yfrown: I got a huge shot in my butt and 15 days of a horse-pill antibiotic- Augmentin. I hope it helps. Hope you are finally feeling better with your sinuses too. :ybiggrin:

Allie- how is your issue? Are you feeling any better? Stop bleeding? Hope you get that checked out!! :shifty-t:
 
Shan, I like the new profile pic! You don't look 42. :) And I dare say, I think Crohn's Mom (Tracy) is somewhere around your age, so you may not be the oldest member of the club (sorry Tracy!). And I believe Sunshine is the youngest club member at 21 (she's still an honorary member of the club, and is still going through testing to confirm her diagnosis).

Shan, that sounds like an awful sinus infection! I hope the antibiotics clear it up without messing with your guts too much. I seem to get recurrent UTIs and the antibiotics that I take for those always seem to make me cramp more and have more d, even if I take probiotics with them. Yuck! I have chronic sinus issues too, but I rarely seem to get infections. I broke my nose when I was a kid, and it never healed right, so now I have a deviated septum and who knows what else going on in there. I can usually only breathe out of my right nostril and I'm frequently congested and my sinuses often fill and drain, fill and drain. Not fun! I hope your sinus issues get cleared up soon!

Allie, what you described, with the body parts feeling out of proportion, it sounds to me like Alice in Wonderland syndrome (with your username, how fitting!). Apparently it's a weird type of migraine. Although when I googled it, it seems to say that it happens when your eyes are open, and you said it happens to you when your eyes are closed. Anyway, here's a link, see if this sounds like what you experience:
http://en.wikipedia.org/wiki/Alice_in_Wonderland_syndrome
 
wow Cat, that's interesting. I've looked into Alice in Wonderland syndrome before, but I'm a little confused by it. My problems are when my eyes are open. When they're closed things calm down. However, nothing ever looks too small or large, it's mostly a sensation for me. thats largely why I said nah, can't be the same thing.
 
Hello, I've been experiencing chrons symptoms for almost 8 years and still no diagnosis. I've had colonoscopy, endoscpy, barium enema, x-rays, video x-rays, cat scans, blood urine and fecal sampling and nothing ever shows up. One time after a colonoscopy, based on the images, the Dr. said "definately crohns" After biopsy results, Dr said "negative for chrohns" I've had so many medications I dont remember them all. Some pills would seem to help for a week or two then the symptoms seem to get worse. From doing my own research, I came across "somatoform pain disorder." I definately have crhonic lower left abdaminal pain. Sometimes it's crippling pain. I dont make it up or imagine it. The pain is almost always associated with bowel movements or stressfull/worrysome situations. And with all of todays technology doctors are cluless. It seems to me that I may have a type of somatoform pain disorder. The only effective medication that I have found that can reduce the pain and increase my appetite, WITHOUT making me feel like a zombie, is marijuana.
 
Carrie, it could still be a migraine aura of some sort. I get weird migraine auras too. At first they were the "classic" auras where it was like wavy swirly stuff in my peripheral vision. But more recently, I get strange visual stuff related to lights and clarity. I only ever get auras on the right side, and when I get them nowadays, it's like someone turned on or off the lights on the right side of my vision, or made things more clear or with more contrast (like when you're in Photoshop and turn up the contrast, it looks just like that!). It's really disconcerting. And usually I would get the headache part of the migraine about 10 or 15 minutes after the aura - but with my most recent migraine a few months ago, I had the aura at about 10 AM and then the headache hit about 3 PM. 5 hours!?? It all just freaks me out!

JWB, welcome to the forum and the club. There's at least one or two others in here who have also been diagnosed with Somatization disorder. What medications have you been on? As for the doctor who said it was Crohn's based on what the scope saw, but then changed his mind on the biopsies, did you ever get a second opinion on that? Did you find out exactly what he saw that made him say Crohn's in the first place? I hope you are able to get some answers soon.
 
JWB, I think it's crap that they can't find anything! it's so frustrating. maybe they're just not looking in the right place. Since we're not rich as all get out, we can't have all the possible tests (insurance will never cover them all. insurance sucks) that could determine something. So we end up with some annoying (I think they're annoying anyway!) diagnosis that is a diagnosis of exclusion. Screw that. I believe these various pain disorders exist, but are not necessarily what the doctors act like they are. I think they just haven't figured out exactly what's wrong, they just know we hurt. feh. I want to see test results that give even the tiniest clue. it's like a needle in a haystack
 
Cat, I am sort of worried that its migraine with aura. If it is, then my migraines have evolved :( having trouble right now as a matter of fact. I always hurt, my head always hurts. technically I have a permanent headache. it's only gone away in surgery/procedures when I get the hardcore painkillers. I can lessen the headache with my painkillers, but since it never goes away it kind of muddies my waters so to speak. I get to pick up more fiorinal at the pharmacy today, but I'm not supposed to take it (of course). treat migraines - potentially worsen gastritis/ulcer. don't treat migraines - wish I could die.
 
Thank you for your kind responses.

Cat-a-Tonic, to answer your questions....the Dr. said crohns because there was an area of the intestines that appeared to look like "raw hamburger meat" He took a biopsy and the test from the biopsy came back negative for crohns. I never got a second opinion. As far as meds that I've had are prednisone and maybee one or two other sterroids. Bentyl, levsin, and donnatal. There have been other antidepressants and pain meds I just dont remember which ones for sure. I think I've tried most. Usually, the worst side effects with any prescription drug is that I become very tired, unmotivated, and a bit lethargic. The benefits vary from somewhat helpfull to none at all. When the pain becomes very severe and wont go away I'll end up in the ER. I usually feel better after being given an IV, strong pain meds (Dilaudid was the last one that made me feel better almost instantly), and a shot of Bentyl. I think its more of the pain meds and being rehydrated by the IV that helps the most, and not the bentyl. I took bently regularly for a while, it seemed to help at first but after two weeks it was completly ineffective.
 
the alice in wonderland thing is very interesting. sometimes i get that long tunnel feeling - i notice it the most when i'm being interviewed for a job (weird, huh) - like when i'm trying to focus very intently on what someone is saying but they keep droning on, i get this strange eye focus going on and it feels like that person is down a long tunnel except they're right in front of my face.

jwb- try getting a second opinion, maybe at a teaching hospital? i got diagnosed without actual positive biopsies. i definitely had inflammation, but all biopsies came back negative. i've had 2 gi's diagnose me anyway, based on symptoms and family history. it never hurts to ask someone else. you have to be your own advocate. a lot of people here even have completely normal bloodwork.
 
JWB, I'm sorry you had to join our little club! Many of us know exactly what you are going through. I would get a second opinion if I were you. What are your plans right now now to move forward?

Cat, that syndrome is so weird! Yeah, mine gets better when I open my eyes. Its feels different, not looks different. That is so funny that it is "Alice in Wonderland" (and yes, my username is after that :p).

I had a BM this morning, and I bled, but not as much as before. More than usual, but not much more. The pain was much less as well. Thank god, right? :p Getting closer to my appt on Monday!
 
Thank you for the advice. Its kinda good to know that there are others that have a diagnosis despite negative test results. I will be seeking a second opinion. Besides getting a second opinion, I really dont know how to move foreward. As far as I understand, there is no cure for crohns, ibs, ibd, or colitis, only ways to mange the symptoms. Over the years I've learned what I can and can not eat or drink. If I could only find something to manage the extreme pain, without a visit to the ER. And have 100% controll of BM's like a normal person.
 
JWB, you're right - if it is an IBD like Crohn's or colitis, there is no cure - yet. But there are ways to get the illness under control and even into remission. I'm currently in remission and feeling quite well most days. I don't have a firm diagnosis yet, but my doctor decided to try a few different medications on me to see what worked and what didn't. I have tried, as you mentioned, Bentyl - it also did nothing for me. Bentyl is more of an IBS med than an IBD med. It'll ease cramping but it won't stop nausea, pain, inflammation, etc. The IBD meds I've tried (prednisone, Entocort, and now Asacol) have all worked great for me. A year ago at this time, I was having flare-ups regularly, diarrhea anywhere from 5 to 20+ times per day, nauseous and weak all the time, etc. Nowadays, thanks to the medications I was on or am on, I feel great. I can exercise, I can make plans, I can work without taking a lot of sick days. So yes, there is no cure for IBD (although stem cell therapies seem like they're starting to get close), but there is remission! And it's wonderful! :) Believe me, it's possible to get there.
 
Cats right, there is no cure, but if you do have IBD it really needs to be diagnosed. IBS wont kill you, but IBD can have complications that can. It is important for it to be treated with the correct medications. With your intestines looking like they did, its NOT IBS, so IMO it really needs to be correctly diagnosed.
 
allieinwonder- thanks for the advice, sorry to hear about some of your symptoms. The thought of blacking or passing out seems scary to me. I would be nervous about driving. The bleeding too. I have had some minor bleeding myself but nothing like what you describe. I feel for you. No one should have to endure the pain and suffering that we and apparently so many others are experiencing. I'm appreciative of this forum so that I can talk with others openly about these subjects however, it hurts me deeply to see others who are hurting, especially when I have no ability to heal their pain.
 
Thank you so much for the sympathy. :) I have almost blacked out while driving actually, I had to pull over and switch with my husband, thank god he was there. The other time it happened in public I was paying for something at a gas station...and poof, I was suddenly on the floor looking up at my husband. Everyone insisted on calling a German ambulance (I am only temporarily in the US, I live in Germany right now with the US Army), but I refused to go. The bleeding is a new symptom, and I'm sure it will clear up soon. I agree with you though, watching others suffer is so hard! Its actually harder sometimes than going through it yourself...but only sometimes, lol.
 
I am a few pages late lol, but I get the shivers/ feeling hot when I have a moderate to severe attack also. Sometimes I crawl into bed after being in the bathroom, and chills/ shivers run throughout my whole body. And at my worst on the toilet, I pour with sweat, like open the window, strip down to basics and a cold, wet facecloth on my face and neck, upper back, even in the winter- and still boiling hot! Usually to freshen up I throw on some talcum powder and deodorant afterwards it is so bad. Sometimes is happens during the day but that is more likely to occur when i've had to get up during the night.

:poo:
 
I collapsed again today. Only it was weird because I was aware of what was happening while I was heading to the floor. I got a pounding headache too. Been constipated with a lot of pain the tramadol isn't helping with.
I'm still waiting for my Entocort. I've been in contact with my GI's office to talk about options since my insurance is refusing to pay for it, but I haven't heard anything since Tuesday.

I also get auras with migraines, but I've had them since I was young. My auras are in my direct vision and are purple shapes continually moving inwards. Except I can get my auras and not get a migraine, or the other way around.

JWB, I'm sorry you are dealing with this, but welcome to the forum, great support here.
 
I'm so sorry you collapsed dahlfacepoet! That has happened to me in the past too. With the constipation from the tramadol, I suggest not taking the tramadol for a period of time regularly. For example, when I first started taking it I would give it a rest for a day, or until I had a BM. Now I only have to give it 8 hours before its D again. Taking over the counter stool softeners while not taking the tramadol helps too, and drinking lots of water!


I just got out of a nice long hot bath. :) They say they help shrink hemmies and heal fissures, so I gave it a shot! I also helped relax my ab muscles, so my pain is down (not much, but a little). And I always sleep better after a shower or bath. :) Have a great night/day (depending on where you are in the world) you guys!
 
Cramping, sharp pains and nausea.... Oh my! Today I think was a start of another flare! I believe that being at the mayo clinic and having them mess with my intestines might have brought it on... But it's been terrible. :( and again, I can't sleep, looks like I'll be up all night with the Emetrol nausea syrup and heating pad! Even though one doctor 'diagnosed' me I still feel like I'm undiagnosed because the mayo doctors still need to figure where the crohns is located before I get treatment or any Meds.
 
Sleep well, Allie :tongue:

When you take your hot bath, add some Epsom salt to the water. That will help you relax too, and it's supposed to be a natural "medicine" for sore muscles and general illness. It may help. Hope you feel better soon! :dog:
 
Sunshine- sorry you are still feeling so bad. I can only imagine how frustrating this is for you. That stupid doctor who threw away your pics needs to be dragged into the street and shot. :ybatty: Wish we could take it all away for you. Is there a favorite movie or show you can put on to at least "lose" yourself in so that maybe you aren't thinking about it so much? Are you able to eat anything? When I am really sick with my stomach- nausea or vomiting- I find that cold sweet tea with real sugar helps. Don't drink anything with artificial sweetener or any plain water- that feeds nausea. I hope you feel better soon and that the time goes by fast until your next pill cam. Sending hugs your way. :hug:
 
Thanks ShanBanana! It is frustrating but I guess we are all frustrated by our ridiculous tummies! I tried to eat earlier, but I ate one chicken nugget the size of my thumb and ended up getting an awful stomach ache from just that... so things are looking so good with eating. I hate that it just doesn't go awaaayyyyyy! ughhh. It's hurting me so much.

I probably won't go to bed till like 5am tonight sooo I guess I could try to write in my stomach blog I have been writing, or work a little bit on my online school stuff. If any of you haven't added me on facebook yet, PM me if you wanna talk since I'll be up all night again.

Really hoping that everyone can get some relief from these tummy issues tomorrow if today was a rough day for you all!
 
Sorry you aren't feeling well Sunshine! I hate that you still feel undiagnosed. :(

I had a bad night too. >.< My pain just wouldn't let up so that I could sleep. When I did finally fall asleep, I was waking up every hour. not fun! I guess its better than giving in to the pain meds and not getting any sleep. >.<
 
Something I happened to find that may help

I just wanted to share some information that I happen to come across yesterday. It seems like this could help with a lot of sypmtoms that people here are experiencing, including bleeding. I would consult your doctor first however, because there could be some potential drug interactions. I'm a bit of a gold prospector and was researching the horsetail weed because it is an indicator plant when looking for gold. What I came across was an impressive list medicinal benefits that this weed can provide. Just search for "horsetail herb uses" you may also want to search "horsetail herb side effects" If this can help at least one person, it was worth the post.
 
I dunno, Allie. I prefer less pain and no sleep, but I'll also medicate the no sleep with xanax and a muscle relaxant if I have to. sleeping pills don't work on me.
 
Sleeping pills work for me...kinda. I bought some when I got here (I left my unisom in Germany for my husband if he needed it) that are "quick release"...bad idea. The medicine is dispensed so fast I feel high as a kite before I can get to sleep. The other thing I don't like about sleep meds is the fact that I sleep half my day away, so I try and avoid them at all costs. My husband insists that when my pain is high to take them, but I hate feeling so sleepy in the morning that I'm angry, I would rather be angry at the pain alone. I feel so freaking guilty when I sleep that long! Friends and family tell me I need it, that and all the rest I get in my room between activities, but I still feel guilty because I feel lazy. >.< Being a spoonie sucks!
 
I feel guilty when I have to sleep during the day. I'd say that at a minimum I have to spend an entire day in bed every other weekend. Sometimes the entire weekend. I used to have people yell at me for it, but my wife is very understanding.

amazingly, no one gives me a hard time when they find me sleeping in the office. I have approval to do it, but its such a big thing to people (omg you went to sleep on the job?!) that I am embarrassed. I have to do it though. sometimes I can't even think.
 
Wow, a lot of posts in here since yesterday!

Allie, you mentioned a hemmie that's only gotten bigger. I had that issue for awhile. Stuff like Preparation H did absolutely nothing and didn't even numb the pain from the hemmie. But I did some googling and found the vitamin E trick, which did seem to help. Not a ton, but over time my hemmie did shrink and is gone now. What you do is, get a bottle of vitamin E gel capsules, like ones you'd take orally. But instead of swallowing them, you take a push pin and poke a hole in one end of the capsule, and squeeze the gel out directly onto your hemmie. I won't lie, it gets a little messy and I highly recommend that you wear a pad so you don't get vitamin E gel all over your underwear (at first I didn't wear a pad, and it actually leaked through my pants at one point, that was embarassing and it didn't wash out so my pants were ruined! After that I wore a pad when I applied the vitamin E gel!). Give it a shot if nothing else is working for your hemmie.

Star, you mentioned sweating on the toilet - do you ever get night sweats? When I flare, I have awful chills when I'm awake and then I get both hot and cold sweats when I'm asleep. I'll wake up just absolutely soaked head to toe in sweat and I'll either feel freezing or way too hot (usually freezing, I've only had hot sweats a few times). It's disgusting, I have to change pajamas and the sheets. If I know I'm in a flare I just automatically sleep on a towel so that it'll soak up most of the night sweats. Still, it's really gross! And it really seems to indicate fever, but frustratingly my temp is always normal or just below. It's so odd!

Sunshine, I'm sorry to hear you're still doing so poorly. :( Do you have a date scheduled for the pill cam yet? I hope it's sooner rather than later, I'm sure you're not looking forward to prepping again (are they making you do prep?) but I'm sure you'd rather get it over with so that you can start on some treatment already! Everybody else has mentioned their go-to nausea treatment, so I'll mention mine as well - ginger. It comes in so many forms - you can get it fresh, pickled, in capsules, even in tea. I keep it on hand at all times. Sometimes Zofran doesn't do anything for me but ginger is pretty reliable for anti-nausea. I hope you get through this rough patch soon! Keep us posted about the pill cam re-do.

JWB, thanks for the info, I haven't heard of that herb before. Have you tried it yourself?

Dahlface, I'm sorry to hear that you collapsed again. :( I hope your insurance comes through for you on the Entocort. I know that it's really expensive without insurance, over $1000 per month and possibly even as high as $1500. If your insurance won't cover it, there's a few things you can try - you can ask your doctor if he/she has any free samples of Entocort. Drug reps often give doctors a ton of samples to hand out. So that could keep you going for awhile. Also, contact the company that makes Entocort and see if they offer any type of assistance or discount programs. And finally, check with your pharmacy to see if they have any kind of a discount card. I know that Walgreens has one and I think CVS does too. Good luck! Entocort worked great for me, I hope you're able to try it and that it helps you a lot too.
 
maybe it really is a migraine, and I'm just suddenly getting them every.single.day. I've been struggling for the past three hours now with what is probably the aura (the jumpy head thing, coming out of myself) and I've been sweating like mad and nauseous. I got my refill of fiorinal on the way home so here's hoping it helps! kind of concerned though that it seems to be happening way more often than it ever has before.
 
Carrie, if you search through Astra (Joan)'s recent threads, she had one where she was talking about chronic migraines. I believe she gave up all caffeine and all pain meds to get the migraines to finally go away. She was living on painkillers but that ended up somehow giving her more migraines and they became chronic. I'm sure if you look for that thread of hers, it'll explain things better than I can. And I'm sure you don't want to give up all pain meds and caffeine, but that was what Joan had to do to get relief.

I'm frustrated today. My GI had asked me to call him after I had been on Asacol for a few weeks and let him know how I'm doing. So I called and said I'm great, and I'd love to continue on Asacol. My GI was like, well, there are risks for long-term side effects. I think that's BS, I know Asacol is safe for long-term and I told my GI that I haven't had any side effects! He said he wants to try me on something similar (something in the same family, but something he feels is even safer long-term than Asacol - I forget the name right now of what he said but I'll be picking it up at the pharmacy tonight or tomorrow). I am to stop Asacol and try this new med for a week - if it works, I'll stay on it. If not, he didn't say specifically but he implied that going back to Asacol would be okay. Argh! I'm just frustrated, I finally found something that works and seems to have put me fully into remission - and now I have to stop taking it. I like Asacol, I don't want to stop it! Although my GI did say that this other med has a generic version, unlike Asacol, so it'll be much cheaper. But still, I don't know. I just feel like I'm being jerked around here! On top of the skin issues (see my thread in the EIM section), I'm not in a good mood today!
 
Cat and Star, I sweat really awful on the toilet. If I get too hot I will pass out. I have been known to sit on the can whilst running cold water under my head from the tub out of desperation, a bit naked. But, I don't get hot flashes just at night, I get them during the day, in between chills. My body temperature hasn't regulated in months, it feels like, I hate sweating through my two layers at work, it's so embarrassing.

On another note, I've lost almost 40 lbs in these 4mos. (30lbs lost in the first 2, so it's slowed down a bit), but now people are saying my face is even thinner. For some reason it strikes me odd to loos weight in the face, has anyone else experienced weight loss in the face?

Called my doc's office again, computers were down and the care coordinator I spoke to on Tuesday wasn't there. So I have to wait till monday for any more answers. This is so frustrating.
 
Also, wish me luck! I have a show tonight and my poem is almost done! This disease makes me procrastinate a lot! Here's hoping I feel well enough to rock the place.
 
blah, it seems silly to change the meds if they're doing ok! I hope your day improves.

I am unable to give up caffeine on my own. I've tried so many times. If I manage to get through the withdrawal (very difficult.. I'm pretty much complete incapacitated) I'm never able to stick with it. I am a caffeinoholic :( I'd like to blame it on growing up drinking coca-cola, or doing chemistry experiments with caffeine in college where I'd get the fine powder on my skin (it absorbs immediately. and it's not the only thing I got on my hands that I shouldn't have. *sigh*)... but I'm sure it's just because I drink way way way way too much coke. and I've been having frappuncino's recently. Those are probably the killer if there is one.

edit: Good luck, dahlface!! just saw your post :)
 
I'm so sorry you are being switched again Cat. :( That is so frustrating! I hope your GI is on the right track and it works just as well.

I am totally not doing well today. I am running a fever, one of the highest I have had. I usually run at 97.2 and I'm at 98.8. I am in a ton of pain, just took another 100mg tramadol (after picking up my last refill). Hoping if I rest tonight and tomorrow I get better, because my GP said a fever meant ER for me. It usually breaks though in less than 24 hours, so we shall see. The spot I have my pain is visibly swollen and warm to the touch too, so the inflammation is pretty bad. Yuck!

One of my best friends is going through health issues too (they think acid reflux), and she has been avoiding getting help for the longest time now. She hit her breaking point last night and got an urgent appointment with her doctor this morning. She has lost 8 pounds this week, she was running a fever, and she was severely dehydrated. They sent her to the ER and they did a CT scan, and did an IV of fluids. I am so glad she finally went..she and I both live in the sorority house, and we lean on each other for support. They are doing an endoscopy on her next week, I'm hoping they finally tell her whats wrong.

Carrie, I have issues giving up caffiene too. And I'm allergic to it!! I had seizures as a kid, and now I am really sensitive to the stuff. I had a pumpkin spice latte from starbucks yesterday, and my pain shot through the roof after just a couple sips. I suggest trying to drink caffiene free coke instead! Because of my allergy I grew up on caffiene-free coke. It tastes the exact same!
 
Dahlface, I'm naturally thin and naturally a bit gaunt in the face anyway, but I did lose about 20 lbs over the course of the first year of my gut illness. (After the first year, I was put on Entocort, and I gained about 25 lbs when I was on it.) I've always had kind of pronounced cheekbones with hollowness underneath them, so it's hard to say if I got any more gaunt during the time that I was losing weight. Looking at photos of myself from that time, I can see that my arms, thighs, hips and waist were all smaller than they are now, but my face looks mostly the same I think. Sorry, that's not very helpful. Anyway, good luck tonight! Knock 'em dead!

Carrie, that sounds like a serious caffeine addiction! I used to have the ocassional soda or coffee before I became ill, but it was like a once a week thing and it was easy to give up caffeine altogether when I got sick. I haven't had caffeine at all, except for the small amount of natural caffeine found in chocolate, since I CANNOT and WILL NOT give up chocolate. :) My best friend has been on a ton of meds and I believe it was when she was on Lithium that they told her NO CHOCOLATE. Well, she's like me, she's a chocolate addict. So even though that med worked really well for her, she had to stop taking it because she could not give up her chocolate! I felt for her, I probably would have done the same thing. ;)

Allie, is fever one of your usual symptoms? I know I've said it 100,000,000 times by now, but please go to the ER. Your doctor has told you to go for these symptoms (for the bleeding too I believe?) and if it's not a usual symptom for you, it could indicate infection, abscess, or any number of yucky things. At the very least, if it sticks around or gets worse, will you please go? We all worry about you! It's clear that you're doing worse and worse, I know there's not a ton the ER could do but I know they can do stuff like CT scans (at least at my hospital they can, hubby had a CT scan in the ER at 3 AM when he had kidney stones). That could look for the cause of the bleed, in case it isn't a fissure, and see if there's any absecsses (I don't know how to spell that!) or fistulas or anything along those lines that's causing the fever. Okay, lecture over. Big hugs and I hope you have a restful weekend and feel tons better very soon!
 
Yeah fever is not one of my usual symptoms. If I am still running a fever tomorrow I'm going to the ER. Fever just adds so much more "feeling crappy" to this! My fever usually breaks really fast. Another thing is 98.8 is not a fever with normal people...but it is for me. So I don't know if the ER will actually take me seriously. Plus, like you said, the ER won't be able to do much for an illness like mine. So I don't want to go if I don't absolutely need to.

It seems like every other week I am contemplating going to the ER ~.~ I will be so happy when I know whats wrong so that I know why these things are going on.
 
oh Cat, it's an embarrassingly severe addiction. terrible.

Allie, if the GP said go to the ER if you get a fever.. :well:
Are you worried they're going to blow you off?

edit: I was slow with my reply. :hug: Allie
 
That, and I dont want to just jump in the car and go, I want to make sure first. I've had really bad experiences in the ER, so I dont actually go until I know its absolutely necessary....
 

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