Undiagnosed Club Support Group

Crohn's Disease Forum

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Sunshine and Dahlface, I hope you two get those results back soon! It sounds like you both had bad experiences. I hope in the end it's worth it and this gets you both some answers!

Dayz, thanks for asking about me. It's kind of complicated but I am still in remission! Well, specifically my gut illness, my probable-IBD is in remission. I am still having intermittent issues with my other health problems though. My acid reflux hasn't been totally under control and that flared up recently, and when my reflux flares up it always upsets my gastritis as well (which seems to be a separate issue from the inflammation/illness in my guts). So I've been dealing with reflux and gastritis this week, but my intestines themselves are actually fine. The gastritis is giving me some pain & nausea, but my stools have been normal and solid for the most part.

Dayz, have fun in San Fransisco! I'm the same way when we go down to the Chicago area, there are so many yummy restaurants both in and around the city! I'm usually leery of eating sushi because I'm petrified of getting food poisoning on top of all my other digestive issues, but last time we were down in Illinois I was brave enough to have some sushi at this cute little Japanese marketplace. It was so yummy! I used to eat sushi all the time before I became ill, I miss it. Anyway, have fun and eat lots of good food! :) As for putting up pictures, do you mean an avatar like my cat photo? If you look at the top of the page, click on User CP. Then, on the left hand side under Settings & Options, click on Edit Avatar and it should let you upload a picture. I hope that helps!

Allie, how's the crocheting going? Did you get an OBGYN appointment set up? How are you doing today?

Carrie, that's great that you demonstrated the Spoon Theory with your co-workers, I hope that helped give them some insight into what it's like to live like this. My co-workers have been really understanding fortunately, there's even one woman who asks frequently about my test results and appointments, and every time I have to tell her that I don't have answers yet, and when I do she always starts swearing and then apologizes for swearing and then swears some more. It's funny, she makes me laugh! :)

Star, I'm not sure what c3 and c4 blood markers are, are they another measurement of inflammation markers? At any rate, it's very good news that your Rheumy is firmly committed to the idea that you've got something legitimately inflammatory and real going on and not IBS like your old GI was committed to. I hope your new GI gets on board with this and that the pain management people can help you out as well. Keep us posted on how your appointment goes on Monday!

May, how are you doing lately? Did you ever go to the spa? How's your brother doing, is he still with that wonderful girlfriend?

As for me, I've been taking it easy and eating safe foods so as not to upset my gastritis and reflux any further, and that's been going well, I'm feeling quite a bit better today. I've got a GI appointment in exactly one week so I'm going to mention the reflux & gastritis issues to him then. He had bumped up my Prilosec dosage from 20 mg to 40 a couple months ago, but that hasn't taken care of all my reflux issues obviously. I don't want to take even more Prilosec, and I don't want to have to give up chocolate and tomatoes either, so I'm hoping we can figure out something else to get my reflux under better control.
 
I'm glad you are feeling better Cat!

I did get an OBGYN appt though, the day after my Rheumy appt. The receptionist I talked to though said for my insurance to cover it I have to see my new GP first, so I'm trying to get that all figured out.

I'm not doing so good lately. :( I am in A LOT of pain and I just overall feel like crap. I couldn't focus last night to save my life. I'm just trying to take it easy when I can and try to get through this right now, can't do much until my appointments anyway.
 
Thanks for asking, Cat, and I STILL haven't made it to the spa. What is wrong with me? ;) Been feeling quite well lately. I can't remember if I said already, but my ferretin was at 32.7 this last time the derm checked it and so he's got me on a supplement called Hemaplex. It's got 85 mg of iron (i think I do mean mg :)) and lots of other stuff. So hopefully that'll get it up faster.

And yes, my brother is still with that wonderful girlfriend. She is now his wife: They got hitched out of the blue a couple of weeks ago. While I think it's completely insane, I wish them the best. No use not thinking positively.

Sorry for those of you who are not feeling well. I hope those of you awaiting tests and appointments get some answers soon! One of these days, it will happen - someone or multiple someones will get some answers. One way or another. It has to!!

I'll be out of town next week for some R&R, so I will check back in sometime after the 24th.

Take care everyone,
May
 
Wow May, congrats to your brother! I really hope it lasts! You never know - my uncle (who is so silly that I literally called him Uncle Silly when I was a child) married his girlfriend on a whim while they were in Vegas. That was nearly 9 years ago, and they're still together and doing great. That's my aunt-by-marriage who has had symptoms for nearly 30 years and was diagnosed with indeterminate IBD (last I talked to her, she had finally gotten an official Crohn's diagnosis, and she said that the doctor who diagnosed her was named Dr. Kroen - different spelling, same pronunciation!). So, even the wackiest and most spontaneous of marriages can work! I really hope it does for your brother. Hey, have fun on your vacation! Going anywhere fun?

Allie, I hope those appointments come quickly, you shouldn't have to suffer in pain like this! Did you make your GP appointment yet? I hope your new doctors are all good ones and can help you out while you're in the US! And if the pain gets any worse (I know I'm starting to sound like a broken record here) please go to the ER? The ER should at least be able go give you better painkillers, and probably even prednisone if you ask for it. Just my opinion, but putting my foot down and asking for pred was one of the best things I've done during the course of this illness! It made me feel awesome and my symptoms went away while I was on it. Just my two cents. Hang in there and please do go to the ER if it gets any worse!
 
I haven't, I was trying to rest between stuff today. >.< I'm so stubborn about going to the ER after the couple experiences I've had...plus at this point I have no idea whats wrong. Same symptoms and stuff, but now that the pill cam came back normal, I feel like I have to start over. So what would the ER do, other than painkillers? One ER sent me away saying it was a hernia, that they couldn't test for, then I had surgery for no reason. I just feel completely helpless and hopeless at this point. >.<
 
The coworkers I showed spoon theory to are very cute about it now. Sometimes they'll see me and say something like, "oh.. you're out of spoons aren't you?" or "you look like you only have one or two spoons left". They're pretty accurate. I guess it's very obvious when you look at me. :shifty-t:

we had a company outing today so I am absolutely wiped out. I'm working from home tomorrow. I had a heck of a lot fun today, but my back and legs are killing me. My mouth feels like it's shredded (sore on my tongue, back of my lips is all ouchy, and my lips are chapped). That doesn't happen this bad often, but I literally pushed myself until I couldn't go anymore, took some more tramadol and kept going, rinse repeat. I was dressed like a clown, we were at one of those family fun parks. I couldn't do most of the rides because of my back surgery, but I played a variety of games for tickets and ended up with a ridiculous amount of prizes. my brain is wide awake though :D
 
new here

guess i'm currently part of the undiagnosed club. :frown:

story: i've always had mild issues with mouth ulcers, but manageable. until i went on an antibiotic in april for a strep-like illness. 5 days into the meds my entire mouth exploded. my tongue swelled, i had about 20 ulcers and my lips ballooned up to double their size and had thrush. had to go to er. got steroids, anti-virals, antifungals.
everything went away, and i was taking large amounts of probiotics to keep the thrush away. started getting a lot of mucus in stools. went off probiotics. stools went back to normal but mouth flared again. had lots of bloodwork done. crp was high, everything else pretty normal. had allergy/food testing. clear. ent sent me to gi to make sure no ulcers in gi tract, especially after he heard my dad has crohn's. had endoscopy & colonoscopy. some areas of slight inflammation but biopsies for crohn's and celiac both negative.
was on diflucan and valtrex (one dr thought it might be shingles in throat)
made me so sick i had to stop.
have been having horrible cystic acne, way worse than when i was a teenager. have also been having spots.acne on legs and back that take forever to clear and leave scars.
after colonoscopy thought i had a bartholin gland cyst near vagina. nope, turned out to be a fistula :stinks: have seen about 10 different drs over the course of this. am finally at a gi specialist at a major teaching hospital 5 hours away. am thisclose to an official crohn's diagnosis. had a ct that was relatively inconclusive, although they did find the fistula tract. had another colonoscopy this past friday, and hopefully biopsy will come back positive. can't believe i'm hoping for that. lol
dr. seems pretty sure of a diagnosis though, even without positive biopsy test.
just seems weird that i don't have any of the classic symptoms (abdominal pain, diarrhea)
i do have:
mouth ulcers
intermittent arthritis
recto-vag fistula
bad hemorrhoids
acne/erythema nodosum (sp?)
20 lb weight loss
family history

dr wants to (more than likely) start me on remicade even if biopsies are neg. need to try to close up this fistula. i could deal with everything else but that. it's been a horror story.

how are all of your diagnosing stories going?
 
allieinwonder said:
I haven't, I was trying to rest between stuff today. >.< I'm so stubborn about going to the ER after the couple experiences I've had...plus at this point I have no idea whats wrong. Same symptoms and stuff, but now that the pill cam came back normal, I feel like I have to start over. So what would the ER do, other than painkillers? One ER sent me away saying it was a hernia, that they couldn't test for, then I had surgery for no reason. I just feel completely helpless and hopeless at this point. >.<
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Allie, maybe starting over, as unpleasant as it sounds, is the best way for you to get any answers. Esp if other doctors just looked at all your "normal" tests and became biased by that. Hopefully you can hang in there until your upcoming appointments. :hug:
 
Hi Flowergirl, welcome to the club. If you do go on Remicade , I hope it works wonders for you. My best friend is a diagnosed Crohnie and she's been on Remicade for a little over a year now, and she likes it and hasn't had any issues with it. There's a Remicade part of the forum under the Treatment heading, I'm sure the folks in there can answer any questions you may have. I don't know much about Remi but I have heard that, as you said, it can be very effective in healing fistulas.

As for you not having "classic" symptoms, that's not necessarily a bad thing! It does make a diagnosis more tricky, but it sounds like you're almost there. And no two of us have the same symptoms anyway, so the term "classic symptoms" of Crohn's is really not all that accurate to say really. A lot of us have diarrhea, yes, but some Crohnies suffer constipation or no change in bowel habits whatsoever. It's very good that you don't have abdominal pain either, I hope it stays that way for you! The annoying thing about illnesses like Crohn's is, that symptoms aren't static - they can change and worsen over time. I didn't develop arthritis until I had been ill for over a year. So it's possible that at some point you may develop some of the more "classic" type sypmtoms, but I hope you don't have to go through that. Abdo pain is no fun, and having diarrhea every 10 minutes isn't either! Anyway, I'm rambling on now, but welcome to the club and I hope you don't have to stay undiagnosed for too long.
 
Cat-a-Tonic said:
Wow May, congrats to your brother! I really hope it lasts! You never know - my uncle (who is so silly that I literally called him Uncle Silly when I was a child) married his girlfriend on a whim while they were in Vegas. That was nearly 9 years ago, and they're still together and doing great. That's my aunt-by-marriage who has had symptoms for nearly 30 years and was diagnosed with indeterminate IBD (last I talked to her, she had finally gotten an official Crohn's diagnosis, and she said that the doctor who diagnosed her was named Dr. Kroen - different spelling, same pronunciation!). So, even the wackiest and most spontaneous of marriages can work! I really hope it does for your brother. Hey, have fun on your vacation! Going anywhere fun?
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Yeah, I kind of was thinking that. Some crazy, "who wouldda thought" marriages last forever, and some "do everything the traditional way" marriages do not. Who is to say what works and what doesn't? In any case, I hope it lasts, too.

I plan to relax a lot. We're going to St. Augustine. It's fairly quiet this time of year. The weather report is saying there's a chance of rain every day, but hopefully it'll be a stray shower in the afternoon or something. It is that time of year. Well, I gotta go finish getting us packed up. Have a great weekend everyone!
 
Hi everyone, I need to vent.

I have not had more than a couple of good sleeps in the last couple of months. I am having a lot of trouble staying focused and feeling very short-tempered; partly the lack of sleep, partly the gut pain, and partly the fact that I am so freakin hungry. I have lost almost fifteen pounds even though I've been eating fatty foods and drinking ensure.

So the kicker is, I have to take my disabled mum around to do some errands tomorrow and she has informed me that I am buying her lunch. I don't know if I can buy her lunch and watch her eat it without losing my temper, and I'm not sure if I'll even be able to stomach a small amount of food. I got really hungry today and ate a pretty normal-sized supper and I am in agony now. But still starving. I'm considering buying her a can of ensure and telling her that's lunch.

To top it all off, I have a migraine. Aaargh!
 
I am on my 14th year of abdominal pains, on and off diarrhea, extreme fatigue, vision problems, nausea, increased heart rate, and so on.
I have had 2 pill cams (normal) 3 Colonoscopies (1st one showed inflammation where small and large intestines meet up), 2 after that showed clear, 3 endos (All clear), Cat scans all clear, Barium test all good.
I am positive for both Anti-Saccharomyces cerevisiae antibodies (ASCA) test but DR said that he cant diagnose me with Chrons due to that cause all my other blood work is fine. He said most people with Chrons show levels of CPR or white blood increases.
The only positive blood work is my HLA-DQ2 gene, Low protein levels (sometimes), positive ANA SCR (SSA AB), High Vitamin B6, contracted Camplabacter jejuni a couple years ago.
I have been tested by every Dr out there for every disease and nothing. I have been to Gastros in FL, GA, and Texas. One gastro said he thought maybe Chrons and placed me on meds, I have been on Asacol, Entrocort, and now Pentasa. I am still sick. I never throw up and I never see blood in my stool and I never lose weight without trying. The highest fever I ever ran was 99.4. I have been tested for Celiac and antibodies are neg but that was after i was gluten free. Even after all this the pain is getting worse and worse but there is no one to go to anymore and all test have been done. I have no idea what to do anymore. I am 36, and mentally and physically exhausted.
Any advice or thoughts would be great.
 
allieinwonder
I have never had success in the ER either. I am from Atlanta too but temporary in El Paso due to the military. I think I have been to every hospital there and always offered pains meds and told to go see my dr. so I refuse to go to the ER anymore. I am in the same boat as you. Pill cam and all other cameras normal. Back to square one again.
 
Welcome everyone to the club, I am sorry you had to join!

Hercules, I am in a similar postion testing wise (apart from Pill Cam, funding refused), as such the GI dept became very unhelpful and far too willing to fob me off with IBS. Found the Rheumy dept much more helpful than GI's ever were. They are willing to look beyond normal tests and closer at symptoms and suffering. They also have a vision which is not limited to the three c's: crohn's, colitis and cealic! There are many diseases out there which cause bowel issues.

Coleeny, how about taking her to a bakery and having her choose a take-out sandwich that she can eat at home, away from you!

I had a full blown attack again yesterday, just like the last one that landed me in A&E, I do not know how it has gone away, I was convinced I was headed there again, it was awful :( So hungry now though and I have a horrid feeling it's just going to come back as soon as I eat again :(
 
Colleeny, I hear you, it's like torture when someone is eating in front of you and you can't. Last year, my mom and I went xmas shopping together, and she decided to buy some cheese popcorn (torture!!) and then she ate it right in front of me (double torture!!). It was just awful, it smelled soooo good but I knew that if I ate even one piece that I'd be in awful pain. I like Star's idea, get her something take-out and let her eat it after you drop her off at home. At least then you don't have to sit there and see & smell her lunch. As far as eating yourself, I usually bring safe foods in my purse - I almost always have an Ensure, some crackers, a banana, etc in my purse. Good luck, hang in there!

Hercules, welcome to the club. 14 years, how awful! You said you've tried various doctors in different states - have you ever tried Mayo Clinic in Florida? There's a few people on here who swear by Mayo Clinic. As for your CRP being normal, I believe something like 10% of people with IBD have normal blood work even in a horrible flare. So a normal CRP is not really anything to go by. It sounds like you've been to a lot of doctors, but if your current doctor says your CRP is fine and therefore you're fine, then it sounds to me like it's time to find yet another doc. Good luck and I hope you're able to get some answers and relief - 14 years is way too long to be suffering!

Star, sorry to hear you had another bad flare, but glad it ended on its own without another trip to the emergency room. I hope it doesn't come back when you eat something! Do you guys have stuff like Ensure or Boost in the UK? Whenever I'm wary of eating, I do liquid supplement drinks like that until I'm more confident of my ability to eat solid foods. Otherwise, maybe something like ice cream, since I believe it was previously discussed that ice cream is technically considered part of a liquid diet? That might be a big easier on your system than solid foods, unless you can't do dairy (I can't do most dairy, but for some odd reason I can do butter and ice cream just fine). Anyway, I'm rambling but I hope your flare-up doesn't come back!
 
hercules - have you tried getting into the major teaching hospitals? i would think UT at austin would have decent drs? and sometimes they are more apt to collaborate, etc.
i have heard good things about mayo in jacksonville as well. i'm seeing someone at Shands at U of FL.
it might be worth seeing someone rheumy, as someone above suggested. a couple of people have mentioned behcet's to me as well as crohn's, and there's so many autoimmune diseases that can cause bowel issues.
don't stop looking for a dr that you like and think will help you.
 
oh - and it also might be worth it to get re-tested for celiac but you have to go off the diet (have gluten in your system) for it to work. it took my mom 20 years to get diagnosed with celiac.
 
Cat, I'm not keen on milkshakes anyway but I have found online some juice based liquid supplements, think I will order some, since I get so frightened after a flare like this of putting solid food in my mouth!
 
Yes I thought about the Mayo Clinic but the insurance only pays 50%. I am very fortunate right now to have military insurance because I am permitted any testing but I will be losing it soon. I went to one Rheum. a couple weeks ago but he was not very helpful so I see another one in a couple weeks. My gastro now is at Texas Tech Medical center and is a researcher for CD.
I read a forum that talked about Low Dose Naltrexone and how great it has worked for people. My mom takes it for Multiple Sclerosis and she calls it her miracle drug. I see people are now taking it for Chrons, Fibro, and so much more.
Has anyone tried it?
 
Hercules, I'm sorry you are in the same boat as me. I would never wish this on anyone! What are all of your symptoms? Have you only seen a GI about everything? I have been doing some research, and it looks like Lupus could be a possible cause. My GI suggested Lupus to me a few months ago, and I passed it off because I thought it was Crohn's. After the pill cam came back normal, I did some research, and it turns out Lupus can cause inflammation of the out lining of the GI tract, something that a scope or pill cam wouldn't see. Lupus also does not cause your CRP to go up. This is what I am going to get tested for next, and I am seeing a Rheumy in October. Basically, I would get tested for other diseases! BTW, my husband is in the military. :) I actually live in Germany with him, and I am temporarily in Atlanta to finish my education.

As for me, I'm just getting worse. :( I'm on tramadol all the time now or I am screaming in pain. Its spread...my entire left side hurts, from my heart to my hip. I am obviously completely freaked about going to the ER, so I am trying to ride this out. I have spent the past three days in bed, but the pain is too bad to sleep, and I can't sleep on tramadol, so I'm just a zombie in here. I'm going to a baseball game with my family today, so I will test the waters on leaving this room. I am so done with feeling this way. I have no more strength to fight this, not with this much pain. I'm basically in survival mode. I really feel like I have hit a brick wall and I don't know what to do. I'm hoping to talk to my dad about it today, and I'm hoping I can sort myself out mentally to be able to tackle this. I'm just so exhausted, mentally and physically.

Like I was telling hercules, I have done a lot of research on lupus, and I believe this might be the answer. I'm not trying to be a crazy hypochondriac either. I'm not getting my hopes up...but I'm hoping my new Rheumy will give me some answers in October.
 
allieinwonder
HI. I hate to hear anyone in pain cause I know exactly where you are. I have been checked for Lupus, Multiple Sclerosis, Sjorden Disease, Celiac Disease, Chrons, Colitis, Lime Disease. I have been to multiple Gastro's, Neuros, Cardio's (I have PVC's in my heart not harmful just scary), Dermo, Gyno, saw a Rheum and going to see a second one at the end of the month. Where are you located in ATL? I am taking classes at KSU online so I can finish there when I get home. I stayed back in ATL too while my hubsand went to Iraq. I spent 2 years getting medical treatment in ATL. I have a great Gyno there if you need one (wish he was all my dr's in one).
My uncle has lupus and my ex brother in law had lupus so I know one of the big signs of Lupus is skin rashes especially on your face, they call them butterfly rashes.
How do you like Germany? Do you only see military doctors over there? I never deal with military besides my primary who just works there and is not military.
Tricare is a live safer. I have had every test for free and had major surgery on my female organs for free. Oh how I will miss Tricare.
I hear alot of ppl take Tramadol. I refuse to take pain meds that is probably why I suffer so much. I am in college full time and starting a business back in ATL so I try to be alert but its hard. I take Motrin 800mg and I dont think they really help.
Your not a crazy hypochondriac and dont ever let a DR or anyone let you fell that way. 6 Drs later my mom was diagnosed with Multiple Scoliosis and for years was called hypochondriac. You know your body better than anyone or even any DR. Be stern with her DR's. I challenge and question my drs all the time and now they run any test I insist upon.
Tricare is great, use it as much as you can. Keep your head up believe me I know those bad days and I am very good friend with my bed. I do homework and business out of my bed all day sometimes. LOL :voodoo:
 
Well, my brother saved the day. He took my mom for her errands and lunch.

Star and Cat, it's a good idea. I might just get her a booster juice if I am in that position again, and she can drink it on the bus.
 
Well I had some food and it seemed to go okay. Things in gut city still rather unstable as you'd expect however! Think I am now coming down with a cold though which is the worst timing after the last 2 days, but what can you do. I will attempt to change my Pain Management appointment, but I have changed one already and it may be that trying to change another one means they will cancel the referral (since that happened when you cancel 2 in a row). It sucks when I have waited over 4 months for it but feel so rotten now I really don't care!
 
Star, I hope you're feeling better tomorrow and are still able to go to that appointment! And I hope they don't cancel your referral if you aren't up to going. Keep us posted!

I'm not doing so well this afternoon. I overdid it today and didn't eat lunch and I'm sure that's why. When I skip meals, I always end up feeling worse. So I did grocery shopping, cleaned the house, did laundry, all sorts of chores, and then I watched the Packers (American football) game on TV. During the game I only ate some potato chips. And now I'm trying to cook dinner but I'm so nauseous. Waiting for my zofran to kick in, and I'm about to drink some ginger tea too to try to get this under control. Hubby will be home from his new job in about an hour and I'm hoping that I'm feeling well enough by then to be able to eat a little something. It's such a catch-22, if I don't eat then I don't feel well enough to eat! Stupid broken guts, even in remission they can be a real pain in the ass (no pun intended).

I hope everyone else is doing okay and had a good weekend!
 
hercules25 said:
allieinwonder
HI. I hate to hear anyone in pain cause I know exactly where you are. I have been checked for Lupus, Multiple Sclerosis, Sjorden Disease, Celiac Disease, Chrons, Colitis, Lime Disease. I have been to multiple Gastro's, Neuros, Cardio's (I have PVC's in my heart not harmful just scary), Dermo, Gyno, saw a Rheum and going to see a second one at the end of the month. Where are you located in ATL? I am taking classes at KSU online so I can finish there when I get home. I stayed back in ATL too while my hubsand went to Iraq. I spent 2 years getting medical treatment in ATL. I have a great Gyno there if you need one (wish he was all my dr's in one).
My uncle has lupus and my ex brother in law had lupus so I know one of the big signs of Lupus is skin rashes especially on your face, they call them butterfly rashes.
How do you like Germany? Do you only see military doctors over there? I never deal with military besides my primary who just works there and is not military.
Tricare is a live safer. I have had every test for free and had major surgery on my female organs for free. Oh how I will miss Tricare.
I hear alot of ppl take Tramadol. I refuse to take pain meds that is probably why I suffer so much. I am in college full time and starting a business back in ATL so I try to be alert but its hard. I take Motrin 800mg and I dont think they really help.
Your not a crazy hypochondriac and dont ever let a DR or anyone let you fell that way. 6 Drs later my mom was diagnosed with Multiple Scoliosis and for years was called hypochondriac. You know your body better than anyone or even any DR. Be stern with her DR's. I challenge and question my drs all the time and now they run any test I insist upon.
Tricare is great, use it as much as you can. Keep your head up believe me I know those bad days and I am very good friend with my bed. I do homework and business out of my bed all day sometimes. LOL :voodoo:
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Oh my goodness! You have been tested for so much! I'm in the Marietta Area, going to Southern Poly (very near KSU!) for my Computer Science degree. :) Tricare does help a lot, they have paid for SO much. But I'm on prime, and overseas it can be REALLY hard to see the right doctor (or a doctor that speaks English!). It took them 8 months to decide I was worth the money for my pill cam, which was quite frustrating. What a waste of time. ~.~ I really enjoy Germany other than that! Being able to experience the world from another point of view is wonderful. Thanks for the kind words. :) I am not doing well emotionally right now, because of how sure I was that this was Crohn's. Even if it might not be Crohn's..this CANNOT be IBS. The more I look into autoimmune diseases as a whole, especially lupus, I realize this is something serious and it needs to be fixed ASAP. I'm really hoping the Rheumy I am seeing (who is associated with Wellstar if you know who they are) is able to pinpoint what is wrong by December. I do take tramadol...right now, I take the amount I am prescribed, which is 4 times a day. Its terrible in my eyes..I only take it out of being desperate for pain relief. Even on the max dose I am in pain...but I'm not screaming, crying, etc. I wouldn't be patiently waiting for medical help without it.

Good luck with the Rheumy at the end of the month!! Let me know how is goes!! :)
 
Carrie, that's so cool that you spin your own yarn! I just buy whatever yarn at the store that is pretty and/or on sale. What kinds of things do you knit/crochet?

I don't know if anyone else has seen her thread, but Sunshine just got diagnosed this morning! And it is Crohn's. It sounds like she needs some support and is going through some emotions right now, so everyone please send some virtual hugs her way.
 
Awww thats so awesome Carrie. Spinning your own yarn sounds like so much fun! I am like Cat, I get yarn from Walmart. My favorites are the lion brand "Hometwon USA" and the super soft yarn by a company I can't remember now....lol. I'm working on a new blanket now, same kind of yarn, but its solid blue. :) It cost $16 for 5 skeins of it, and that should make the entire blanket (might need one or two more skeins). I'm having a harder time with my edge without the stripes to help me, which is frustrating! I have to pay attention of it wont have an even edge on the right side. ~.~
 
I knit/crochet mostly little things like scarves and stuff. This yarn I'm working on, I'm hoping to use in a luna lovegood scarf I saw online. I think it'll go well.
 
I usually get my yarn from Ben Franklin because they seem to have better prices and better selection than most stores. I usually do Red Heart Super Saver yarn although if something nicer is on sale then I'll get that instead. I have two laundry baskets full of yarn! I just finished making my dog a sweater, and the weather has just turned colder here so I'm thinking it's time for me to start on another blanket too! Not sure if I should buy some new yarn or just use some of what I've got in my laundry baskets already.
 
so i guess i'm more or less officially diagnosed now. biopsy came back non-specific chronic inflammation, but with all my symptoms, the doc is willing to give me a dx (guess a fistula will do that for you) and get me on remicade, hopefully by next week.

hope that all of you get your dx soon, whatever they may be, and that you get on the road to recovery.
 
Flowergirl, congrats on your diagnosis and glad to hear that you're getting Remicade, I hope it works really well for you!
 
Luckily I made the appointment today, the Dr was really nice but slightly a waste of my time, since he didn't want to interfere with Rheumy in any way, so have been discharged from Pain Management for now.

I really regret not going to A&E Friday, been so uncomfortable trying to get my system back on track.

Must admit I have been feeling overwhelmed lately. 4 medical appointments in 10 days, a vague dx after 2 years of waiting, extra sick with one thing or another for a month now on top of normal issues and a god awful flare. You know how it is, barely holding it together with normal sick and then something else comes along!

But now last Hospital appointment is over for now, I am feeling quite relaxed, just going to sit back and wait to hear about the surgeries. No clinic appointments until December and January now. Also just a mucky throat, some intermittent earache and a "cold" head, is quite mild now, hopefully it will go totally soon. I am sure going back on my daily Echinacea now.
 
Flowergirl, that's wonderful!

That's so cool that a lot of us do crafty things! I love crafts, and I recently made a blanket with ironed on pictures! It looks like a scrapbook blanket. It came out very cool! I'm thinking of what I should make next... Maybe a cute pillow or something! :)

Hope everyone is doing okay today. Gotta keep our heads held high! Can't believe I am finally diagnosed!! Took long enough!
 
Hey everyone, my symptoms have been really weird and erratic lately. My doc got me some Tramadol for the pain, and I'm so grateful for that. I've noticed that I became constipated after taking it. I went 4 days without a BM, and then it was D. Anyone else experience this with Tramadol?
I've caught a cold, I work with kids and my immune system must be shot, so I'm not surprised. My boss was really upset about me calling in again today. But I don't know what she expects me to do, come in and infect the whole school?

How is everyone else doing?
 
Tramadol causes constipation for me too. Very badly actually. I suggest not taking it all the time, so that your body has times of normal bowel movement so that you can go. Someone told me if you drink a lot of water the constipation will get better, but it never helped me.
 
Just wanted to let you all know, I got more info on where my Crohn's is located and everything...

I have Moderate to Severe Crohn's Disease with very deep ulcerations all through out my small intestine... :( and the part that is affected with Crohn's is my entire small intestine... thank goodness we found it finally. Going to Mayo clinic on Monday to start treatment!
 
Sunshine, I'm glad you're getting treatment so quickly! That sounds awful that it's all through your small intestine, and that it's moderate-severe. Do you know what type of treatment they're going to try? Whatever it is, I hope it gets you some relief! How are you coping today with the diagnosis? Has it sunk in any?

Flowergirl, you said you're starting Remicade soon, right? I hope that goes well for you too and that you're coping okay with your diagnosis too!

Allie and Dahlface, ever since I've been on Amitriptyline, it seems like most meds constipate me! Apparently Amitrip has a mild constipating effect which can be compounded by other meds. So whenever I take Zofran, I have to take stool softeners too or I'll be backed up for a few days or even as long as a week if it gets really bad. And whenever I get constipated, I always either tear a new anal fissure or reopen an old one (I can never quite tell) when I finally do push out the hard stool. Yuck! I have found that drinking a LOT of water helps somewhat, but when I say a lot I mean a really large amount of water to notice any difference! So I just try to take enough stool softeners when I anticipate constipation.

Star, glad to hear that you get a nice rest period now after all of your appointments. I hope the rest helps and that you don't have any flares for a good long time! You mentioned surgeries - I know you've talked about laprascopy, but I'm drawing a blank on what the other surgery would be? Keep us posted on that, and I hope you get approved for funding and don't have to wait too terribly long for an appointment!

As for me, I'm doing okay but passing a lot of mucus yesterday and today. I've got a GI appointment on Thursday and I've decided again to ask to try Pentasa. I think I've got a strong argument for it - it works on the same spot in the intestines that Entocort works on (and my GI knows that Entocort worked well for me), and when I first asked my GI to try Pentasa, he said no because (something to the effect of) "it could cause bad side effects and isn't worth the risk of trying". Well, then he tried me on Hyoscyamine, which caused awful side effects (horrible nausea and vomiting). So he can't argue against potential side effects because I've already been though that! I'll tell him that if Pentasa gives me side effects, that I'll just discontinue it the way that I did with Hyoscyamine. I'm hoping I can convince him to at least give me a trial of it. I keep feeling, with the occassional mucus and d, that I'm just not quite in remission but very close. I am hoping that Pentasa will be enough to put me fully into remission, if Dr. S will just let me give it a try!

How's everyone's crocheting/knitting/craft projects coming along? Allie, you started a new blanket, right? I did too, I decided yesterday evening to have a look in my laundry baskets of yarn, and I found quite a few skiens that I think will go nice together as big chunky stripes in a new blanket. I'm thinking of making my dog a blanket too, in the same shade of burgundy that I made her sweater. She's got a red cushion and a red harness so I'll make her a red blanket! :) It won't be as big as a blanket for a person of course, so that'll go by much quicker. I think making a dog blanket and a regular blanket should keep me occupied for most of the fall!
 
Cat, I still am shocked that it has affected my entire small intestine, and that I have a numerous amount of deep ulcerations. Didn't know what to expect, but I definitely wasn't ready to hear that this morning. And it makes me so sick to my stomach to this that there are millions of people like me who are undiagnosed for SO LONG and hear IBS all day long, and then once you finally find out what it is, it's like it was staring them in the face the whole time! And if I had caught this earlier, it might not have been as bad... but yeah it's kind of sunk in a little bit today, but I'm still hoping to wake up in the morning and have it be an awful nightmare, and that I had a miracle over night and it's gone.... but that's not going to happen unfortunately. Just trying to take it all in, and take a deep breath, because I know I'll get through this, it's just very overwhelming. I'm happy that I know what is wrong, but I'm upset that it is Crohn's... Bittersweet I guess?! And It's a little frustrating when my friends are like, "you have Crohn's? What is that?", because I don't really know how to explain it and when I tell them they think it's like the flu, it just goes away and that's it... but it's not... it's never going to go away, and it's a chronic illness that needs to be treated correctly. I don't really expect any of my friends or close family to understand what I'm going through or what the illness really is about, because unfortunately a lot of people have NO IDEA about Crohn's and IBD, but I just wish they did. and honestly I think it needs more awareness, because it's a big deal, and a lot of people suffer from it.

How is everyone doing?? Any news on getting new tests done or appointments? I want to make something like a blanket, I'm thinking a cute pillow or something. :)
 
Sunshine, I'm sorry you are so overwhelmed. :( It is frustrating that people hear IBS like that. I surely thought I would be in your shoes. As for your friends, I would raise awareness! Let them know what it is and whats going on. It is a big deal, and people need to realize that.

Cat, I have started a new blanket. :) Its a solid one, a bright blue color. I already used a skein! I bought 5 skeins when I got the materials for it, but I think I'll have to get one or two more skeins later, especially with the border. I am having trouble with the right side...its not even if I don't pay attention. The beginning of it isn't even at all, but I really don't want to unravel it and start over, so I will have to do a border to even it out. Plus the border makes it look a little nicer. :)

I really want my Rheumy appointment to get here. The more I read about Lupus, the more it fits. BUT, I don't want to seem like a hypochondriac because I have jumped from one disease to the next. The only reason I looked into it is because my GI asked me to. I am talking to people diagnosed with lupus on another forum (since this helped so much this past year), and someone on there has Lupus AND IBS...and the lupus aggravated the IBS so bad that she thought it was a digestive disease at first as well. At this point I know its not just IBS, because IBS would not cause the weight loss, the joint pain, etc...so this kind of makes sense, right? I just REALLY want a Rheumy to look at all this and help me get a diagnosis for SOMETHING so I can start on a treatment. This wait really sucks!! :( I want this all to be over...I just want to be normal again. :( I'm tired of being the "sick girl". :(
 
Oh, and I completely forgot...I had trouble yesterday with a BM, and I'm pretty sure I ripped something. :( I've been bleeding ever since. I took tramadol yesterday just to constipate me (and help the pain from it...it hurts to walk and sit!) so that I wouldn't aggravate it any more. When I woke up this morning I had to go, just like every morning, and it hurt like hell and bled more. :( So I'm guessing it might be a fissure? Oy.
 
Hi Allie,
Sorry you had problems with your BM and now you are bleeding. That sounds so painful. I know how it feels to be so sore- I have had so much D lately that my butt is killing me- I feel like I have a sore or something, but of course I can't see anything. I just try to use wet wipes instead of toilet paper because paper makes it bleed. I hope you get some relief and that it stops bleeding. Is there anything you can get for it? I have this anti-biotic cream that my GI gave me that helps a lot- it is a RX and I can't remember what it's called, but maybe you could call your doc and see if they can call you in something.

I don't feel well today. I am so tired- my fatigue is really bad today. :yfrown:I got 9 hrs of sleep last night but it never seems to be enough. And I have a wopper of a headache so that doesn't help. AND of course I am sick to my stomach. I feel like the room is spinning. My gastritis is acting up. All I can seem to eat right now that doesn't make me want to barf is fruit, so I am trying to munch on some grapes.

Hope everyone has a good tummy evening!! :thumleft:
 
Thanks Shan. :) I think I will pick up an over the counter cream when I pick up my next prescription, since my doctor's appt is so far out right now. Wet wipes is a good idea too...I use aloe toilet paper (Which is a god send by the way), so the paper usually doesn't hurt. But having D 8 - 12 times a day with an open wound SUCKS! I'm glad the tramadol stops that from happening as well as getting my pain down.

I sleep a lot too! I sleep, on average, ten hours a night. I feel so guilty but I can't seem to function if I sleep less. Plus I have nothing going on in the morning...why get up tired and cranky? :p

I'm sorry you are feeling bad lately. :( What are your plans right now health-wise? I hope you feel better soon!
 
Hey Allie, :wink:

Healthwise, I really don't have any other plans. I have had all the tests- except the major ones like the pill cam. I have had the upper endoscopy which found the gastric ulcers I have all over my stomach lining. I take Zegerid for that to reduce the acid so they can heal. I think it is getting better but I still have MAJOR nausea and vomiting some days. I go days without eating, then whenever I stop vomiting, I eat EVERYTHING that isn't nailed down because I am SO hungry. And of course I have had the colonoscopy which ruled out Crohns and Celiac- and confirmed the IBS :ylol: theory that we all have. I take diahhrea meds for that and it helps a little but some days I spend the entire day in the restroom. I take Phernegan for the nausea and sometimes Zofran, but that usually gives me a migraine when I take that so I try to stay away from it. :frown: On days that I have major pain, I take hydrocodone, but I try not take that too often since it could be addictive. I just try to use my heating pad when I have the really bad abdo pain. Do you suggest Tramadol? I have never taken it- never even asked for it. What do you think?
 
ShanBanana, if your current method of pain medication is hydrocodone I would definitely ask for tramadol.
 
Cat, not waiting on funding (this time!), but the various departments have to agree to do the procedures, confirm they also feel it would be beneficial etc. Bone Marrow Biopsy is the other one I am waiting to hear about.
 
Shan, if you want something that isn't as strong as hydrocodone, I suggest tramadol. Its used for chronic long term pain. It isn't as effective as hydrocodone, but it isn't as addictive. I've been on it for a year now and I am starting to have tolerance issues, but its because my symptoms have gotten much worse lately, so I have been using tramadol more often. When I don't use tramadol I use "Max-Freeze", which is a cooling gel. My pain is a stabbing, not cramping, so the heating pad doesn't help as much. I have inflammation of some sort in my upper left quadrant, so it helps me ignore the pain.
 
I heard yesterday my best friend's dad died and I am very sad. He was part of my life for such a long time. Now I would like to go to the funeral, but it depends on where it is held. They live in a village between 2 towns, one that I live in. If they hold it in my town perfect, their village, difficult (poor public transport& few taxis, but could manage, also see grandparents while I am there), the other town, not possible (too many connections/if I *could* get a lift I would be tied to when the other person goes and leaves, not ideal in my state of health).

I hate not being able to drive or have someone who can give me lifts!! :( Gets really hard at times, especially when you are sick.
 
I'm sorry about your loss Star. :( I hope you are able to find a way to the funeral.

I just got done sorting things out with my insurance. Turns out I need to see my primary care to get a referral for the Rheumy. So now I have a doctors appointment Monday! I know it is really just for the referral, but if she could help me out in the meantime that would be great. The nurse said she is a really great doctor, very thorough and caring. Yay!
 
Allie, that sure sounds like a fissure! With regards to getting an OTC cream for it, I personally think that Calmoseptine is lovely. You can get it at Walgreens (they usually keep it behind the pharmacy counter, so you'll have to ask the pharmacist for it). I think it's about $8 for a big tube of it. It's cooling and soothing and I can't go without it! It's nice and thick too, you don't need to wear a pad when you apply it. I highly recommend it! I learned about it when I first joined the forum, and now I would never go without it. :)

Star, I'm so sorry for your loss. And I know how tough it can be to go through a funeral when you're not feeling well. My husband's grandfather passed away just a few months after I first became ill, and I was flaring at the time and it was an hour drive to get to the funeral. We had to make several pit stops at gas stations along the way and I had to sneak away to the bathroom during the service once or twice as well. It was very uncomfortable. I hope you're able to make it to the funeral, that both your health and transportation options cooperate.

Hi Shan, it sounds like you're still not doing that well - can you go back to the doctor and ask for more tests? Or possibly get a second opinion from another doctor? It sure sounds to me like you've got more than "just IBS" going on! Good luck, I hope you're able to get some relief and better answers.

Sunshine, what kind of pillows are you thinking of making? Sewed, or knit/crocheted? I've got a pillow project that's kind of on the backburner for now, but I will hopefully be starting relatively soon. I saw a picture online of pillows that someone had made, and they were all in the shape of Tetris blocks! I think there were 6 or 7 of them, all the shapes that are in the game. It was really cute, and since hubby and I like video games, he and I agreed that those would be really fun as throw pillows for our couch. So I'm going to sew Tetris pillows eventually! First, I have to get our Halloween costumes done, then I can work on pillows. And when I'm watching TV is when I work on crocheting my blanket. I'm always working on crafts! :) I'm the type of person who just can't sit still and watch TV, I have to be doing something, and I can crochet and watch TV at the same time. As a result, I have a zillion scarves, ha ha!
 
Star, so sorry to hear about your loss. :( *hug

Cat, I think I want to sew the pillow. I love sewing! :) That tetris idea sounds so cute!! I'm not sure what kind of designed pillow I want to make yet, I'll probably look online and get some ideas! You are making halloween costumes?? What are they?? Sounds so fun! And I know what you mean about having a zillion scarves haha, because I love scrapbooking, so i have a lot of pictures everywhere and a lot of scrapbooks! haha!
 
Sunshine, I started a different thread in the "My Life" section of the forum a little while ago about our Halloween costumes. Here's the link:
http://www.crohnsforum.com/showthread.php?t=22552
That's been hubby's and my hobby literally since we first started dating. We always do couples costumes. :) There's a link within that thread that shows all our Halloween costume photos from years past.
 
I had a GI appointment today, and it went really well! I had been on the fence about my current GI, but I'm glad I stuck with him. For once we were both on the same page! I told him about my increased reflux issues and gastritis, and he tweaked my reflux meds (added Zantac on top of my Prilosec, so I'll be taking Prilosec in the morning and Zantac in the evening). If that doesn't help, I am to call him and we'll figure something else out. Also, I told him about how I'm still having d a few times per week and also mucus every so often, and I asked again to try Pentasa. He said that any drugs in that family (Pentasa, Asacol, Lialda) are all very mild and don't pose too much risk of side effects, so he feels that I can try one of them. He wrote me a 2 month supply of Asacol - he said that Pentasa works on the small intestine, and Asacol works on the colon and the terminal ileum, so he feels that Asacol is a better fit for me than Pentasa. He said I should know if it's working within a few weeks, and that I should call him after that time to let him know how it's going, and then he'll presumably renew the prescription for longer. Yeah, I am so happy I get to try Asacol! I'm hoping this is really the push my body needs to get fully into remission and stay there! :)

Also, I was talking with my GI about my hip arthritis. He said I should go to my GP to get further testing to find out what kind of arthritis it is (or whether it's really arthritis or something else) because he said I'm too young for it to be wear-and-tear type arthritis, and it may very well be related to my gut illness. I told him that I know a lot of people with Crohn's have arthritis, and he said "I don't necessarily want to say yes, this is Crohn's..." I cut him off there and said, "But I surely do have something in the inflammatory bowel disease family?" And he said YES! That's the first time my GI has actually acknowledged that I've got IBD! He's still technically calling it "chronic nonspecific enteritis" but it's so great to hear him say that he believes it's IBD. My GP is the same way so now all my doctors are on board! Yeah! It's not a diagnosis, but it's another baby step in the right direction!

So, my next step is to try the Asacol, and then I have to make a GP appointment to talk further about my hip arthritis. My GI said it'd be best to have a scan done, either CT or MRI. I think I'd prefer MRI, since you don't get exposed to radiation and it gets a better image than CT does. Anyway, I'll have to figure that out with my GP. But this feels like progress! And if we can tie my hip into my gut definitively, then that'd be a big step in the right direction! With me luck! :)
 
I've been making a concerted effort to take my tramadol instead of working through the pain, and I swear it's making some of the muscle fatigue/weakness/pain thing that happens.

Also, it makes me a bit constipated which means I can have frappucinos from starbucks!
 
Cat that is awesome news !
For your doctor to come right out and say Yes, it's IBD IS a diagnosis in my mind! :)
I hope the Asacol works well for you. Gab was on it when she was 9 and it helped her a lot then. I was prescribed it around the same time (that was way back when my GI first suspected CD with me.. almost 10 years ago), however, I didn't get to take it because I am very allergic to Sulfa medications. I often wonder what they will do with me if they ever figure out what is wrong...I am allergic to so many medications :/
BEst of luck !! And wtg ! Great step in the right direction!
 
Thanks Tracy! :D My GI is very "by the book", he doesn't like go prescribe medications unless absolutely necessary, and he doesn't hand out diagnoses unless he sees definitive proof. For him to say it's IBD and for him to write in my file that it's IBD are two very different things, at least to him. So I know it's not a diagnosis yet, but just to get him to say it was a minor miracle! I nearly fell off my chair when that happened! :)

I haven't picked up my Asacol yet, am going to head to the pharmacy in a little bit on my lunch break. My GI said to take it 3x per day so I'll take the first dose with lunch today! So excited! I have high hopes! I'll keep everyone posted on how it goes.
 
I'm so happy for you Cat!!! That went very well!!! :)

Some ol' same ol' over here. I'm doing the same thing as you Carrie, I'm taking the tramadol trying to be prepared for the pain. Be careful though, a tolerance can build up. I'm back down to the minimum dose to try and get this tolerance to go away. I'm trying to rest as much as I can because its getting harder and harder to do everything. I look forward to the times I have nothing going on. :( I'm really hoping my new GP can help me somewhat on Monday.
 
I think that deserves a bit of congratulations cat so congratulations cat! It's not the giant leap that you were hoping for but most definitely a step in the right direction! It's the culmination of a lot of hard work and determination so you enjoy every second and best of luck with the new meds.
 
Allie, I was being extremely frugal with my tramadol until recently so I probably have a couple months before my tolerance is bad. I'm sure I'll let back up on the tramadol before then.

I don't know if this is the tramadol or just coincidental timing, but it seems like I get restless hands/feet/legs more on the days I skip some of my tramadol. it can get so bad that I want to scream, and I end up playing computer games all night because letting my hands stop moving is so uncomfortable it hurts.
 
Allie, good luck on Monday! I hope you get a good GP! My GP is great and fully believes that I've got IBD - I hope you get a GP like that who truly believes you're legitimately ill with something besides IBS. Keep us posted on how it goes, and in the meantime I hope you're able to rest as much as possible. Hang in there! When do you see rheumy and OBGYN? October, right? So not too much longer?
 
Thanks Crag! :)

Carrie, my best friend is a diagnosed Crohnie, and she recently started taking a new med (I can't remember what but I think it was for her anger issues? She was on Lithium for a little bit but now she's on something else to keep her calmed down). And it caused her to develop RLS. She called her doctor, and he actually told her to take a vicodin just before bedtime. She did, and no more RLS! Obviously you don't want to be taking vicodin on top of tramadol, but check with your doctor - perhaps there's something else, like a supplement, that you can take to ease your RLS symptoms. Or maybe just change the timing of your tramadol. I don't know, but it seems really odd that such a thing worked for my friend!
 
I have wondered if its due in part to the other meds I'm on. I also take lamictal, wellbutrin, and lexapro. She may be on lamictal or something similar if she switched off lithium. a xanax can also help.

I think its an over-sensitivity thing with the nerves which is why taking a pain killer helps.
 
I just picked up my Asacol. Holy cow, it's expensive! Even with my insurance, it was a $75 copay for a month's supply (2 pills 3x per day, so a total of 180 pills - the pills are 400 mg each). Entocort was the same co-pay, but Entocort is known for being expensive - it's well over $1000 for a month's supply without insurance, so $75 per month seemed like a bargain compared to the full price. According to the paperwork, Asacol would be about $450 per month without insurance, so that's not exactly cheap either. Unfortunately there doesn't seem to be a generic which is why both of those meds cost so much. Well, there is a generic, but it's complicated. Entocort is a steroid like pred and should be super cheap like pred is - but, Entocort has a special coating, so that it passes through the stomach and most of the small intestine, and releases its magic medicine in the terminal ileum/right colon area. Apparently that's the same reason that Asacol is so expensive too, it's mesalazine, but it's got a special coating. There's a generic version but it doesn't have the special coating. To get the medication to work in the right area, you need to buy the name-brand, which is crazy expensive for no good reason. Otherwise it's systemic like pred and you get all sorts of side effects. Oh well, at least this way, if Asacol doesn't work, I can justify stopping it as saving myself some money, right? And if it does work, I can chalk up the cost as a worthwhile investment in my long-term health.
 
That's cool, Cat! Glad the GI is acknowledging you've got something inflammatory going on and that he let you try Asacol! Sucks that it's so expensive, but hopefully it'll bump you that last step into remission.:medal1:
 
Cat, oh my gosh, that's great that your doctor is actually listening to you! What a crazy concept, right?! haha :) Glad you are getting good attention from the doctor and that you are getting closer to get an actual diagnosis! Great news! I'm sure you can see the light at the end of the undiagnosed tunnel now!
 
Hey Cat,

Way to go on your "semi" diagnosis!! At least your doctor sees that it is something inflammatory and not just IBS. I call my doctor when I am so sick and tell him how I am doing and he just says take OTC diahrrea meds and your Phenergan when you vomit and you will be fine.:eek: It is just IBS so nothing to worry about- whatever. :yrolleyes: I called the other day and told them I had two episodes of bloody diarrhea and they didn't even blink. :ymad: Is that normal if it is IBS- do you think I have something else? Anybody? I just don't know anymore.

BTW Cat, super awesome costumes!! :thumleft:
 
Shan, no you definitely do NOT get blood in the stool with IBS! There are a few "red flag" symptoms that are not IBS per the Rome diagnostic criteria. See this link:
http://www.ibsgroup.org/diagnosis

It really sounds to me like you need to get a second opinion from another doctor. Blood in the stool is not normal and it's not IBS. Please start looking around for a new doctor because it sounds like your current one isn't listening and/or doesn't care that you're suffering like this! And it is clearly not IBS!
 
I concur with what Cat said, blood is not part of IBS in any way, shape or form. Is there a possibility of seeing another GI at all?

As for me i'm coming down with yet another bug, sheesh! I did start back on my immune boosting echinacea this week so will certainly carry on with that.
 
Star, you just can't catch a break, this is the 3rd bug in as many weeks right?? Ugh, that must be miserable! And it seems like you must have something auto-immune if your immune system is so susceptible to just about every germ you come into contact with. I don't suppose you've mentioned all these colds & viruses to your rheumy? I remember you saying he wants to try an immunosuppresant trial on you, but if you're getting constant colds now, it might be downright unsafe to lower your immune system even further! Then again, I remember hearing something to the effect of, a strong immune system will have a strong reaction to germs - something about how the symptoms felt during a cold isn't the cold itself but the immune system's reaction to it? So perhaps your immune system is too strong and you could benefit from the immunosuppressant trial. Either way, you might want to call your rheumy and let him know what's been going on and get his opinion on things.

As for me, I'm on day 2 of Asacol and so far so good! I haven't noticed any side effects whatsoever. I haven't noticed any benefits yet either, but I was told it'll take a few weeks for it to kick in. I posted another thread asking questions about Asacol, and one person said it took 3 weeks for them, and another girl said it was only one week for her. For me it seems like medications kick in sooner rather than later - pred took an hour for me to feel it and a day for it to be fully effective, and Entocort took only 9 days (it normally can take weeks or up to a month). So I'm hoping to feel the Asacol goodness soon!
 
I'm sorry you are coming down with something else Star. :(

Shan, like they said, blood does not happen with IBS. Time for another GI!

I had the worse night last night. I was in too much pain, nausea, etc to sleep. My pain was so high breathing was hard. So I took the max dose of pain meds, and that causes insomnia. So I spent the night awake, and still in pain, and really nauseous. I tried OTC antinausea, because I'm out of zofran, and it didn't work. I was completely miserable. The sorority sisters had me out of bed at 9am even though I have nothing till 6pm tonight, because I have a new roomate moving into my room today. I am super cranky and irritable and I want these symptoms to go away. I'm not going to take the time to go to the ER for only a couple hours of pain relief. This is just getting ridiculous and I really don't know what to do anymore.
 
So I got some paperwork in the mail from my GI. It's a report of my pill cam that came with some swanky images. I don't know what to make of it, though. The report summary says "Differential diagnosis would include drug (NSAID) injury and mild/early crohn's disease." I haven't spoken to him since right after my pill cam. So I don't really know what this all means. There also seems to be a shallow ulcer in my terminal ileum near the cecum. I have an appointment on the 29th, so perhaps I will get an explanation... possibly an official diagnosis? I don't know. What do you think?

I also got an appt with a rheumy in November.
 
dahlface, I'd say it means he found something during the pill cam, but is unsure of the extent and reason why its there. it may depend on your history now, whether or not you've used nsaids frequently or not I guess. good luck!
 
Oh star, so sorry to hear you're being put through the wringer again, my heart really does go out to you. Are you still considering trying to pursue the pill camera route, is there anyway of setting up a meeting with the PCT, or even just a point of contact there who could take your case on?

Allie so sorry to hear you're suffering too, and severely if you're having the difficult to breathe kind of pain. I know you said that a trip to the ER for what will basically be pain relief is not something you want to do, I'm of exactly the same mindset too! However, have they seen you in that type of pain before? It's going to be more hassle for yourself but it can't be detrimental to your case for them to see you like that. I know it's way more added stress but I was thinking that maybe making a nuisance of yourself down there might make them sit up and take notice? You clearly need help and soon, I sincerely hope things improve for you and quickly.

Dahl, I'm certainly no expert but sounds to me that yes he has found something that shouldn't be there. The question he seems to be debating is whether or not it's early/mild crohns or caused as a result of NSAID use. Either way at least something has shown and the question now seems to be cause as opposed to definition. I wish you the best of luck with your follow up appointment.

Cat, real happy for ya! Finally seems like you may be putting these troubles to bed, let's hope that they remain sleeping for many years to come if you do achieve it! Here's hoping that everybody starts to see the light at the end of the tunnel, the brighter the better! Hope that you all have the best weekend you can too, a bit of sun wouldn't go a miss either!
 
Dahlface, I'm also not entirely sure what that means, but it sounds like he saw some damage that could either be from Crohn's or from NSAIDs. Have you taken a lot of ibuprofen or anything like that in the past? Further complicating things, I believe I read somewhere that NSAIDs can contribute towards triggering Crohn's or to making a gut environment that's more susceptible to developing Crohn's. They don't know exactly what causes IBD but NSAIDs probably play a role. Anyway, your doctor should be able to tell you for sure what that means.

Well, I gave myself a bit of a scare today! I went to the bathroom, and shockingly my poo was dark green! I just started Asacol yesterday so I was sure it must be the culprit. In a panic I started googling Asacol and dark stools. After a few minutes with no results I suddenly remembered, oh, duh, I took an iron tablet yesterday! That would be why my poo is dark, not Asacol. Ha ha! My GI had told me yesterday that Prilosec not only robs the body of calcium, but also of iron, which I hadn't heard before. So I took an iron tablet but then forgot all about it. Oops!
 
I haven't been to an American ER in over a year, so no, they haven't seen me in that kind of pain. I'm hoping showing my primary care on Monday helps me out. I'm basically starting at the beginning again, hoping for a better outcome than years past. My husband is hoping they will offer something different for pain relief, but I know that won't happen. The main goal of the appointment is the referral to the rheumy, which they already told me they are giving me.
 
I haven't taken a lot of NSAIDS in the past, nothing more than ibuprofen for a fever every once in a while. So I don't think that could be it. I kind of wish he would call instead of making me wait till next week.
 
Dahl, that really sucks you have to wait and wonder!

I am thinking now this is the same bug I had at the beginning of the week... just thought I was getting better and it came back, must be a virus. I had been taking echinacea daily for years to boost my immune system, but when ex-GI told me to come off multi-vitamin, I stopped the other one too. I was fine for a few months. Before I started on echinacea I did get alot of bugs one after the other like this. I know not to stop again in future lol. It is part of ME/ chronic fatigue syndrome that you have a poor immune system and get lots of bugs. I still think even with all the new health info I did have that at least in the beginning if not now as well. It was textbook onset it really was. Or it could have been early days of whatever I have now... who knows, certainly not me or the Drs yet lol.

Crag, still a no-go on Pill Cam. To have it done at another Hospital would mean local PCT paying the bill so won't happen. As Rheumy is hoping for me to have a Laprascopy that is probably the better test. I will have to wait and see where things are next year I think on that one.

On a more positive note, the hedgehog food has been taken advantage of, since I found a poo in the dish lol. Discovered I was getting visits from parent and baby a few months ago and decided to feed them before winter set in (not then since it was really fat and obviously getting enough). I thought a mention on non-people poo would make a change!
 
Star, I'm so jealous that you guys have wild hedgehogs over there! We have no wild hedgies anywhere in North America. If you get pictures of your hedgie family, I'd love to see! I'm a big hedgie fan. I rescued a hedgie years ago from the humane society, he had been abused and wouldn't even eat when we first got him, it was really dire. But we nursed him back to health and he had a few good years with us before he got hit with a few illnesses (cataracts and Wobbly Hedgehog Syndrome - yes, that's a real illness, it's kind of like MS for hedgies). So we put him down, and I was very sad, so last year I went to a breeder and got myself a baby albino African pygmy hedgie. Here's a photo, this is Edgar! :D

DSC05818.jpg
 
Allie, sorry I forgot that you're backwards and forwards between here and Germany! I really do empathise with you though. As regards pain relief have you thought about asking to try morphine patches? Once you slap one on it lasts for a week, putting out an even dose every hour, 5mg I believe. It's honestly the only thing that's given me any kind of relief, still doesn't stop the pain when it's agonizing but it certainly takes the edge off the daily pain. They're also safe to use for a few months without any major addictions etc so I'm told!

Dahl, sorry to hear that you're stuck in limbo with regards your results. Is there anybody at his office that you could get in touch with, maybe they could clarify things a little before your actual appointment?

Star, I can't put into words how much sympathy I hold for you. It's nothing short of disgusting that they're treating you in such a way. At least the rheumy is on side and is happy to pursue the laproscopy route, hopefully that will highlight the cause of all your suffering. is there no way of them getting you in before the year is out, or is it that you'd rather hang on now until the new year?
 
Well i have no idea when it will happen at this point really, I am assuming it won't be this year due to past experience with waiting times. For the Laprascopy they are in the process of writing to the Surgeons- they have to agree to do the procedure, and they may want to see me in their own clinic to assess me, before (I assume) I even go on the waiting list.
For the bone marrow biopsy, a letter was sent around 6 weeks ago to Heamatology, no reply as of 2 weeks ago. And again they may want to see me before I get booked for the procedure.
Of course I am not at the top of the list, am afraid the attitude seems to be rather "we'll you've been like this a long time, no need to rush things". Of course it is my life (sorry existence) not theirs! I will say though that was Rheumy's Registrar and not Rheumy himself who said that.
I also see GI again (seen him once, seemed okay) in December, even he admitted night attacks did not fit with IBS but still said IBS and wanted me to try this diet at another Hospital before things were looked at again, said diet I have now been declared not suitable for which I knew it would happen since it is an IBS diet.
That's why really I said I will wait until new year and see where things are at and if I want to push for a Pill Cam. I would rather stick with Rheumy tests for now and see where they lead. Hoping if I don't get a dx from them it may point towards another route. And I have been offered an immuno-suppressant trial if nothing is resolved, still considering that as for me in my situation there are alot of downsides, But I am thinking on it.
 
cat- your hedgehog is adorable!! i had guinea pigs for a long time. i love small woodland creatures.
oh, and i thought it was interesting what you were saying about the immune system being too strong.
i've always been the person who never gets sick. but i was wondering the other day why i always get canker sores when i do get sick, but taking steroids makes them go away. it probably is my immune system being over-zealous taking care of the cold.

very interesting... :cool2:
 
Yeah I know all about waiting lists, wait times etc etc etc! I'm very fortunate at the mo that they are dealing with things very quickly. I certainly don't take the good fortune for granted that's fo sure! Possibly a silly question but have you tried asking to be put on the waiting list before any outpatient appointment? I know they're probably going to want to see you beforehand bit it may be worth a try, my theory is you're going to need these procedures so it'd make sense to get you on the waiting list and then try to get a cancellation or something for the pre-consoltation. It's a joke that they're adopting that mindset, whilst you may not be dead you're clearly in a very bad way!

It sounds like you have a lot of thinking to do with regards where to go from here, I wish I knew more so that I could offer some insight but I'm still very new to all this, most definitely got lots to learn!

I hope you're weekend hasn't been too much of a chore, I've only got off the sofa to wash the dog and that's only cos it really needed to be done, he got a skin infection so it's a real healthy household! I pray that you make some progress soon and at least that you start to feel more human with immediate effect!
 
crag said:
Allie, sorry I forgot that you're backwards and forwards between here and Germany! I really do empathise with you though. As regards pain relief have you thought about asking to try morphine patches? Once you slap one on it lasts for a week, putting out an even dose every hour, 5mg I believe. It's honestly the only thing that's given me any kind of relief, still doesn't stop the pain when it's agonizing but it certainly takes the edge off the daily pain. They're also safe to use for a few months without any major addictions etc so I'm told!
Click to expand...

Thanks Crag. I have heard about pain patches, and they were suggested to me by some other spoonies, but the only ones over the counter are menthol, which I already use in a cream. Morphine patches sounds much better. The whole back and forth from Germany is hectic, but I'm glad I am back in the states where I can get proper medical care. Everything was so slow in Germany...if I had been here I probably would have a diagnosis by now. ~.~

I'm really hoping I make major progress tomorrow at my GP appt. I wrote out all of my symptoms, and have pictures of the cracked corners of my mouth, mouth sores, and skin rashes. They already told me they are doing a full blood test so I'm hoping that shows something too. I know some GP's are much more helpful than others, so I'm hoping I got a good one. This is getting really hard to be the active sorority girl when everything hurts and I just want to sleep all the time. :(
 
Allie -I have to ask...what is a sorority girl...you keep mentioning it and I keep meaning to ask! Is it a job or a club ..
 
A sorority is a club that american colleges have. I'm sure you have seen movies or TV shows with them - The house bunny, Greek, etc. Its a group of women on a college campus with a common goal, and we have secrets and stuff like that. Its an american thing. :) We aren't like the stereotype here though, since we are an engineering college! :p
 
Allie, best of luck with the GP appointment today! I hope you're able to get some kind of satisfaction or relief out of the appointment. I know none of us really expect to get answers from our GPs but I hope it goes as well as a GP appointment can go. And I hope the GP is good and doesn't say the three letters we dread (IBS).

That reminds me, I still need to make a GP appointment to get my hip looked at further. Other than that, I'm doing well! I think the Asacol is working. I haven't had d or mucus since I started on it. It's probably still too early to tell if it's really working or not, but I haven't had any side effects either. So far so good!

I hope everyone had a good pain-free weekend. I did - I made a lot of progress on my Halloween costume, did some cleaning, spent time with my mom, and went to an improv comedy show with hubby and some friends. I hope everyone else is having fun and doing well!
 
That's great news Cat, so pleased :)

Crag, sadly the only people who can add me to the procedure list are the Surgeons and Heamatology. No way I can get things moving myself, got to wait to hear from them now. Not even Rheumy can order those kinds of tests.
 
My GP appointment went well. She said she has seen cases like mine before, and that she knows something is wrong, she just can't figure it out. She had a patient with an autoimmune disease that took her 3 years to find. She basically wants to keep my symptoms manageable while waiting for it to show up on a test. I'm to stay on the tramadol, take immodium when I need to, etc. She did a full blood test and said she was going to test my B12 again, and if it is low again she is going to put me on B12 injections. She said I was spot on for getting the Rheumy appt, and gave me a referral for him. I put IBS in my new patient packet, and explained that my symptoms don't match up with it 100%, so she thinks its another illness on top of the IBS. They also swabbed a mouth ulcer I have right now to see what they could find from that, and gave me a cream for the corners of my mouth when they crack again. We also talked about the "warning signs" of when the illness is getting worse and I need to go to the ER.

She never said my symptoms were all in my head, she never said I was crazy, or stupid. She was wonderful. She even took 45 minutes with me to do a full exam and make sure everything had been covered, and made sure I had enough tramadol. I am very satisfied and I hope my blood tests show something when they get back in a few days!
 
Star, it seems to be that way over here too, certain doctors can only order certain tests. My GI isn't able to order any imaging tests for my hip, even though there's a good chance that it's related to my gut illness. I have to go through my GP for that. And back when I had my Addison's test, there was tons of confusion between my GI and GP as to who was going to order that test. It took a week of phone calls between the two of them to get it figured out! Anyway, I hope the surgeons or hematology department can figure it out and get something ordered for you, and that it doesn't take too long!

Allie, that's wonderful, it sounds like you got a really good GP! I hope the blood work can shed light on something - although you've had normal blood work (except for b12) pretty consistently in the past, right? Normal CRP and all that if I'm remembering right? I'm similar, I've had slightly elevated CRP but nothing worrying, normal ESR, normal CBC, etc. The only thing that comes back consistently low is my sodium level, although I believe even that was normal the last time I had it checked. I've always had normal B12 too although I started taking a B12 supplement as soon as I seriously thought that this might be Crohn's. Anyway, I'm rambling on, but that's great that your new GP sounds like a good one! When do you see rheumy and OBGYN? Early/mid October right?
 
Allie that sounds great!

The most I can do I think to hurry things along is to go on a cancellation list once any clinic appointments come through. Not much else really.
 
Yeah, the B12 is the only thing that has showed up so far. CRP can be normal for a ton of autoimmune illnesses too, like lupus, so I'm not really focusing on that right now. My Rheumy appt is the 10th of October. My OBGYN appt is the 11th, but I'm pretty sure I'm canceling it because my GP wants me to go the Rheumy route for now, and I didn't get a referral for the OBGYN. So I don't have too long to wait, just two weeks!
 

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