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Bozzy, that must be so awful and embarrassing for you ~ It's good that you're husband is so supportive...but still... :(

Thanks for asking Cat :)
Unfortunately, no I'm not any closer to any type of diagnosis. My most recent diagnosis of "gastroparesis" is almost laughable at this point. I mean, I did agree that my stomach wasn't working (I barely ate for about 2 months and lost just under 20 pounds). However, my GI doc was just too quick to diagnose "just" that, hand me some pills that don't work, and send me on my way saying "we really need to get you eating again" arrggh! Anyhow, I got a bad case of bronchitis and a sinus infection a few weeks ago. Went to my regular doctor and got a Zpack. Strangely enough after taking the antibiotics for a few days, poof, I can eat again! I don't eat a lot even "normally" but what a relief to just eat more than 3 bites without extreme pain and fullness! Soo...who knows now. I'm back to the usual with food running right through me again, and lower abdominal/pelvic pain and back. It's such an odd feeling with the pain ~ I often relate it to bad period cramps, except I had my uterus removed 11 years ago so it definitely can't be that ! LOL. It's just so frustrating what we all go through trying to get some answers and help. And, unfortunately with me having a daughter with severe Crohn's it's a downfall ~ my doctor blames all of my "issues" on being stressed due to worrying about her. It's ridiculous. I've tried to tell him I've been sick longer than her, and I was suspected of having Crohn's a year before they ever suspected it with her. As a matter of fact, her and I were both on Asacol and Prevacid at the same time when she was 9 years old ~ that was 10 years ago :( He just doesn't listen.

Gab is absolutely loving not having a stoma any more ! I can't imagine how she felt starting her first year of college and having to deal with that, but she didn't let it stop her from doing anything for a second. :)
As for my boys, (yes there are 2) they are basically still on hold as well. My older son goes every 3 months for an ultrasound to check his liver and spleen because they have been enlarged since April of last year. Docs don't seem to think its a big deal, but mom does. My youngest continues to have daily stomach pain, back pain, and fatigue. He is due to have his 14 year physical in a couple of weeks, and I have decided that if his growth is still on or below the 5th percentile then I will finally get more aggressive in finding out whats "wrong" with him. It's just so hard to push the doctors when they only have a few things show on testing, etc.
I constantly question whether Im doing the right thing with them by pushing for tests, then not pushing, then pushing. It's an emotional roller coaster ride honestly. I just hope I don't regret the "not pushing" part later :trolleys:

So have you heard any news on your Aunt yet today ?? I hope she's doing ok..:ghug::ghug:
 
Thanks T. No news on my aunt yet. She's in a hospital in Texas so they're an hour or two earlier than it is here (it's just past noon here right now) and they told her the surgery would be "at some point in the morning" (she said it's like having cable installed, they give you a very vague timeframe) and since it's still morning there, they might not have even started yet! I forgot to ask how long the surgery would take too. I'm having lunch with my mom and another aunt in an hour so I will see if they've heard anything then. The aunt that's having surgery is the wife of my mom's brother, so I could see if my mom has talked to her brother today. Just got to wait another hour to see my mom and hopefully she'll have more info!

My heart goes out to you, I can't imagine having 3 ill children, let alone being ill myself and 3 of the 4 ill people being undiagnosed! I'm sure it is very much a roller coaster ride and I don't know how you do it. You seem like a very strong person! I'm glad to hear Gab is doing well. It sounds like your doctor is kind of a jerk though! Have you gotten a second opinion? And have they offered any explanation whatsoever as to your older son's enlarged spleen and liver? I am not aware of anything that would cause that, but like you I'd be worried too! Try not to be too hard on yourself, I'm sure it is incredibly difficult to know what is the right thing to do and it sounds like you have a lot of ill people to look after, including yourself. Take care and I hope you and your boys can get some real answers soon, and I hope Gab continues to do well. Hugs!
 
I just found out an update about my aunt - she's out of surgery and everything went very well. She's in a recovery room right now and then will be in ICU for probably 24 hours, then they'll move her to a regular room for a few more days and then possibly she can get discharged! :) She'll still need lots of physical therapy and stuff and will be very limited as to what she can do but she's on the mend and will be okay. Apparently she shattered one neck vertebra and cracked another one so they put rods and pins from c1 through c4 (c2 is shattered and c3 is cracked) to hold everything in place. So she probably won't ever be able to bend or move her neck/head like a normal person again. She loves doing yoga and now she won't be able to do certain yoga poses ever again. But for the most part she'll be okay, no paralysis. Oh, and apparently one of her doctors said that in the accident she also nicked her femoral artery (!!!) but it clotted up and will heal on its own. So she came really, REALLY close to dying both with the broken neck and the femoral artery! WOW she is lucky she's alive and will be okay! I'm very thankful!
 
Cat,
I am SO SO glad your aunt is going to be OK! Yes she is very lucky. She may be limited on some things, but she will get used to her new way of life as she heals, and it will all be OK in the end. There is a reason she is still here :ybiggrin: God is not ready for her yet :rosette1:

Allie, hope you are doing better and hope you can have a good weekend :wink:

Sunshine, how are you feeling? Hope your tummy is doing better :shifty:

Hope everyone has a great weekend, and I hope I don't fall or bump into anything else in the next few days so my current bruises and boo-boos can heal :wink:

:heart: you guys!
 
Hi

I have been reading this forum for a long time and felt it was time I joined!
I have been having symptoms for a couple of years and even though they have found ulcers in my terminal ilium and I have all the classic symptom (my GI has even said that he thinks its crohns) I only have the "suspected crohns" diagnosis.
I really love how supportive everyone is on the forum and I have been feeling so down with everything that I feel it is important to connect with people who understand.
I will write all my symptoms at another time but I am sure you all know what they will be :)
Thanks for reading my post.
 
hi sunny days! welcome to the forum!
has your doctor given any reasons as to why he wont give you a formal diagnosis?
i can understand why i dont have a diagnosis, because my bowel looked normal on the colonoscopy (just waiting for biopsy results)

everyone is lovely on here. feel free to ask any Q's or vent etc ;)
 
Hi Sunny Days, welcome to the club and the forum! Feel free to share more of your story with us. What tests have you had? Is there a plan in place to get you a diagnosis and some treatment & relief? It sounds like your doctors have found some evidence of illness, did they say why it wasn't enough to diagnose? I hope you can get a proper diagnosis soon. Good luck, and again, welcome! :)

Shan, I hope all your bruises can heal! For what it's worth, I am really klutzy myself and I am always bumping into things and getting bruised too. I don't think I can blame IBD on that, I'm just naturally awkward. :p

My aunt is doing well and still had a sense of humor even coming out of the anesthesia. Apparently she called my uncle (her husband) right after her surgery, and all she said was that line from Frankenstein: "It's Aliiiiiiive!" Ha ha! :) I think she'll be just fine.

I hope everyone is having a good weekend! I went to a comedy show last night and it was really good. Laughing really is good medicine and my mood is much improved today. There's nothing quite like seeing live comedy, either. Good stuff! :)
 
i love comedy shows, definitely good for the soul ;)
i often buy comedy show tickets for my husband's birthday.

strange symptom currently occurring.. itchy eyes with a red, burning, blotchy face. i look like a clown!
 
Sunny Days - WELCOME! It is SO important to find a place where you feel like others understand. I am still so very thankful for having joined this forum myself. Probably much like you, I was down and out feeling incredibly alone. I just wanted to have someone to talk to that was also experiencing what I was...this is the perfect place. I'm sure you'll feel the special power of everyone's support here in no time. I know I certainly have. And I feel blessed because of it. Thank you all for your support and encouragement.

I was woken again at midnight with my left eye pressure & crazy pain. I didn't go to work today because of it - my vision's now being affected. Luckily the mri and opthamologist appointments are not far off. I've been medicating all day with tramacet. I can still feel the pain, but less so, which is great. Another positive outcome is that i've been sleeping pretty much all day. So i'm working on catching up on all the sleep i've been losing lately. Hopefully my boss doesn't take it out on me too much upon returning to work...sometimes that happens. Not an ideal working environment, but hey...I've made my choice as to where I want to work, so I need to take the bad with the good!

Hope the rest of you are doing well. Cat, great news about your aunt. There is a reason for everything. Her work here is not done yet.

Sunny Days...looking forward to reading your story. You couldn't have picked a better bunch to open up to. :ghug:
 
Hi Everyone

Thanks for the warm welcome.
I have had symptoms for 3 years and they are diarrhoea alternating with constipation, blood in on and around stools, nausea, weakness, dizziness, joint pain, stomach pain and migraines.
I have had colonoscopies and 1 found 1 ulcer on the terminal ilium and about a year later there were 3.
Most if my blood work was "normal" thats why he said he hasn't diagnosed it yet because the inflammatory ones are fine but my bowel has the ulcers????.
I have lactose intolerance confirmed by bowel biopsy and now I have fructose malabsorbtion.
About 2 years ago I was anaemic that was the only abnormal blood test I had and I took iron for ages to bring it up now he want it to bottom out again and give me the pill cam as it would cost $2000 if I am not anaemic. I don't understand it if someone is sick and a specialist feels they need a test then it should be done!
I went to the Emergency room a few weeks ago from the pain and the doc there said I think it crohns and I hadn't mentioned it he also said that it can take 10 years to get a full diagnosis and he felt sorry for me because it does take a long time.
Another reason my GI said he wanted to "be sure" was that once its diagnosed the drugs come with there own set of problems and if I travel etc insurance will be an issue well I have issues now.
It is all so confusing.
I am sure I have left things out but I will keep adding if you all don't mind.
Thanks for reading. X
 
Midol is the biggest joke ever. :( It does NOTHING to help my monthly girl cramps. i'm in so much pain over hereeeeeeeee. plus, 2 of my "friends" no longer are my friends anymore. I guess you find out who your real friends are when you go through so much. It's been a bad night, I've been upset about my friends plus my cramps and normal pains.

Crohn's Mom, you are doing SUCH an amazing job with your children. You are such a strong person, truly!! I know that my mom has been the best care taker with going through tests, and she has not given up through all the years, and now we are very close. I know that your children all appreciate what you are doing. I know that being sick can affect the entire family and I really look up to you, being so strong for all your kids and still being so strong and happy. You are amazing, and to your kids you are definitely their hero. Keep it up, you are amazing!!! :)

Cat, so glad to know that your aunt will be okay, and that she is alive, that is truly a blessing. :) Send lots of hugs her way!
 
Sunshine, I'm sorry you've lost some friends over all of this. The ones who stay are the precious gems though.
 
Sunshine, is Midol an NSAID? I can't remember but if it is, don't take that stuff, it could just end up making your tummy troubles worse! And I'm sorry to hear that you've lost a couple friends but Carrie is right, the ones who stick by you are your true friends. Good luck at your appointment today! I hope you get a good result from that awful CT scan!

Sunny Days, I'm not sure how the medical system works there, why would they charge you for the pill cam if you're not anemic? The pill cam is a good test to have, so I hope you are able to get it without having to pay for it. And unfortunately yes, it can sometimes take a really long time to get a diagnosis. I don't know if 10 years is the true average or not - some people get diagnosed right away, and others take forever to get a diagnosis. My aunt (the one I was mentioning earlier who broke her neck) had digestive troubles for many years, literally 30+ years, and only recently got diagnosed with Crohn's herself. Sometimes it takes awhile for scar tissue to become apparent when all the other tests come back normal, I guess. :( I hope you can get diagnosed soon, it sounds like you're close to a diagnosis but frustratingly not quite there yet.

Bozzy, itchy eyes and a red face sounds to me like it could maybe be an allergic reaction? Did you recently try a new food, or change shampoo or face cream or anything like that?

Ever, I hope you're doing better today. Good luck with the MRI and opthamologist! I don't have eye pain like you described, but I do wonder if this illness somehow affected my eyes. For many years, whenever I went to the eye doctor, one eye would always get one "step" (or whatever you call it) worse. It would alternate too, so one year my left eye would get worse and the next year it'd be my right eye. That was my pattern for like 10 years. Then I got this IBD or whatever it is, and suddenly both eyes improved one step! That was 2 years ago, at my most recent eye exam both eyes are the same as they were, neither changed since getting a bit better. Very weird! I wonder if there's some mild inflammation or something that pushed my eyes back to being a bit better than they were? Or maybe it was just coincidence, I don't know. Still, weird though to get worse and worse and then suddenly a bit better out of the blue!

So how's everyone doing today? I am good, still not sleeping well but otherwise doing great. My brother finally moved out of my house yesterday!!! Yeah!! That is a very good thing, when I initially said he could stay with us I thought it was going to be for a few months. It ended up being a year and a half, and for awhile he was taking drugs and being very hostile towards me and picking fights and just generally being a jerk. He's been a lot better lately but I am still glad he's gone. I'm so, so glad to get my space back and have some peace. I feel relaxed and like a weight has been lifted. This was long overdue and I can't believe he's finally out - thought this day would never come! :D
 
Awe Sunshine :kiss::kiss: Thanks so much for your kind words ! You're so sweet :)
Cat is right, don't take the Midol dear ~ Nsaids are not good for you!
Good luck at your appointment today! Hope you get some answers !

Cat, how awesome is it to have your house back ?? :dance::dance:
I've let a couple of my brothers (I have 7) live with me at different times throughout the years. Never again ! I told my husband after the last one moved the last time to put a sign on our front door that says "NO VACANCIES" :rof:
I'm glad your Aunt made it through her surgery safely, and I hope she's getting better and better. I also hope your guts are starting to improve now as the stressors lesson :eek:

Bozzy, I agree with Cat ~ sounds like an allergic reaction is happening ! Have you gotten any worse since you posted ? Or did you get it figured out? I hope so :) Any time there are hives on your face it should be taken very seriously, as they have more of a chance of moving to your mouth and then throat and taking the risk of your throat closing up. Not trying to scare you, but I have MANY allergic reaction to things/meds throughout my life and I have learned the hard way. HOpe you are taking some Benadryl or similar to counteract whatever is happening :)
 
T, 7 brothers!!?? I only have the one, thank goodness! No sisters either, he's my only sibling. But I am with you, there is a "No Vacancy" sign on my door now too! I will turn bro's room back into a guest bedroom, and guests are certainly allowed to stay for a day or even a weekend but no more long-term house guests! We only have one bathroom and I do not like sharing it with others besides hubby! ;)
 
waah! I refreshed this page partway through writing a reply.

Cat - for most orphan diseases, auto-immune, slow-growing cancers, etc, the time to diagnosis is approximately 10 years. It differs slightly if you focus on one particular disease, but they're all around that long.


I got back the glucose results from my ITT, but none of the others. So far, I'm a little concerned because it looks like my readings fluctuated wildly. Is that normal?

9:07 82
9:14 34
9:16 86
9:28 75
9:58 43
10:18 71
 
Hi peeps! I dont know what that reaction was about. but just lasted an hour.. my face just felt red hot and tight. i hadnt eaten anything new.. and i dont wear make up or creams. oh well, at least it didnt get worse!

How is everybody?
 
Bozzy, I'm glad to hear it didn't last! It's crazy what things can cause allergic reactions. My dad once had an allergic reaction to a hotel pillow, he thinks maybe it was the laundry detergent they used on the pillowcase or something like that. He woke up and his face was red and blotchy, but only where it had touched the pillow!

Carrie, I don't know how to interpret those results but I hope you can get them figured out! And that's crazy that it really is a 10 year average to get diagnosed for stuff like this. Well, I've got 2 years down... statistically then I should be diagnosed by age 40 since I'm 32 now! That makes me pretty glad my GI decided awhile back to try to get me into remission rather than do further tests. I'd rather ride out the next 8 years in remission if possible! Well, when it comes down to it I'd rather be in remission forever. :p

Bozzy, I'm doing well - how have you been aside from the allergic reaction?
 
Bozzy, have you been checked for any mast cell abnormalities? mast cells are what cause allergic reaction. an umbrella syndrome called mastocytosis can cause random 'allergic attacks'.

I get terrible face rash if I stay at a hotel without my own pillowcase. I always either bring my pillow or a clean case to use.


Cat - my endo pulled more of my results from my chart! All of the ACTH results are gone. I'm so annoyed. I know he did this because he doesn't like it that I have my own feelings about my results, but what the hell. Its my body, my results! I'm going to have to open a can of whoop-ass on someone. the only results that get pulled are this doctors results. gr.
 
hi carrie, how very interesting. ive not heard about that before. i googled it - and my symptoms dont look the same. its not like hives, just hot and red.

i have suffered a two year period of cold urticaria about 3yrs ago. if any cold water touched me, i broke out in hives.. then it just stopped happening! how strange...

other than that, im doing ok. my hot flushes are starting to return though, with periods of "confusion". - its like im not really there, and lose track mid sentence - oh, and i get flashes in my left eye too. so its all fun in the sun eh?

carrie - have u tried googling the glucose test results? becuase ive not got the foggiest idea what they mean! haha!
 
I have a friend who has systemic mastocytosis which is how I learned about it. She has it pretty bad. She found out after having an MRI and having a terrible reaction where her back tattoo is. weird huh? it took her a long time to be diagnosed and even then it sounds like she was lucky it happened that quick.

I tried so many different ways of googling about the results, but I didn't find anything. Everywhere I've seen results mentioned, the glucose numbers posted all went in order like you'd expect. I didn't find any mention of results where the blood glucose dips back down.
 
There are still more results he's waiting for, but yeah, we'll end up discussing them. He has an accent though so sometimes I have trouble understanding him.

There are still results outstanding for growth hormone, acth, and cortisol that correlate with the glucose results.
 
i don't have any idea what i'm saying, but i would think your glucose levels would probably be wildly different based on if/when you ate or drank and at what point you are in the digestive process. diabetics get relief pretty quickly when they crash and then eat something. same with hypoglycemia. ???
 
Argh! So frustrated! Sometimes my GI is really good and other times not so much. This seems to be one of those latter times. I called his office to see if I could stop taking the hydrocortisone steroid suppositories, as I think the steroids are part of the reason I'm not sleeping well. His nurse called me back a little while ago and said that I can stop taking the suppositories but I should also stop Asacol for a week (???!!!). Apparently my GI didn't tell the nurse why, so I told her I really REALLY don't want to stop taking Asacol as it's working well for me, and that she should let my GI know that and find out his reasoning behind telling me to stop it for a week. Asacol wasn't part of my question to my GI so I'm really confused as to where this came from. I'm doing so well on Asacol, no way am I going to stop it unless he gives me a really good reason why. It just sucks that I have to keep fighting for treatment even when I'm doing really well! It's a neverending battle. So anyway, she hasn't called back yet. Wish me luck!

Sunshine, how'd the appointment go? Any news? Fingers crossed for you!

Carrie, sounds like your doctor is being as frustrating as mine is! Is he even allowed to pull results from your chart? That sounds fishy to me. Did he pull them from the online thing? Could you call or go to his office and request printouts of every test result so that you have them? I don't think he can legally deny you access to your own test results and medical records.

In other news, I started my period yesterday - and so far at least, NO cramping or pain whatsoever!!! It's like a miracle, it actually shocked me. I went to the bathroom yesterday evening and when I wiped, there was a bit of blood on the TP. I figured I must have a new hemmie or fissure but felt no pain back there and couldn't figure out where the blood was coming from for a minute, until I realized it was coming from my lady parts and not my bottom. Hah! That's definitely a first! I have been drinking more chamomile tea than usual as someone (flowergirl?) said it can help with the monthly cramps and hormone shifts. Hmm, very interesting! I love tea so I will continue on with the chamomile, it can't hurt and might be helping!
 
Hi Cat, not posted here for a bit but still lurking. Your GI has a bit of a habit of stopping/suggesting you stop meds via the nurse with no good reason.
Could you write a formal letter asking that he either speaks/emails you with reasons behind changes to meds etc or that he fully briefs the nurse as to why he is doing so. That way you won't keep having to chase around and get stressed with each GI contact. Explain that you are merely trying to be in full control of your condition and being part of the decision making process is important to be able to do this.
One of the most important parts of a doctor /patient relationship and therefore trust is that the doctor informs you of your choices and allows you to make an informed choice as to which option you prefer...a skill that quite a few medics seem to completely lack!
 
Thank you Little Miss H, that is a good idea. Sometimes my GI calls me himself, and other times he has his nurse call me. Sometimes I get a call back the same day and other times it can take a week to hear back from him. And of course sometimes he says he'll refill my Asacol with no problem and other times he says stop taking it! He isn't consistent in a lot of ways and it does stress me out. I think I will write him a letter letting him know that and how it affects me and my ability to get the best treatment for my illness. He of all people should know that undue stress is not good for the guts, even for undiagnosed people! Ugh.
 
I sent a message to tech support. He can 'deselect' results from my view so I have to ask him about it directly. I find it terribly annoying, but whatever. The results are released around midnight and I get an email when they are. I'm just going to write them all down. I'm trying to give him the benefit of the doubt right now. He is an older gentleman with a strong accent, and I really think he's old fashioned and needs to be in control of the situation. It probably drives him up a wall that I know the results as fast as he does, and I research them. He hasn't pulled all of my test results, but I looked back into the past last night and discovered that he did pull all of the test results related to ACTH except for the oldest one which I bet he just missed. So I've told Kelly that I think a week from today should be reasonable to wait on calling him. Do you agree? He has nearly all of the results now, the others will just define the curve better.

Speaking of this, I got more results back last night, but I'm still missing some of the cortisol and acth readings. my GH peaked an hour after injection at 3.52 ng/ml. My ACTH results began at 546 pg/ml, the lowest result I have thusfar is at 30 minutes - its 83. So far, I have a cortisol peak of 21.1 ug/dl which, I think, is normal. its also an hour after injection. My ACTH has been consistently high whenever tested (its been tested for 2-3 years now). standard range is 8-42.

It's really really hard to wait a week to call him!! I'm feeling a little scared right now. Here's my scary worst case but realistically possible scenario. so keep in mind its worst case! but it has merits that worry me, and I hope, worry my endo enough to do more testing, mris, etc.

I've gone down this path before and turned back because my cortisol isn't high. I guess it is usually high with a high ACTH, but it doesn't have to be (for unknown reasons? I'd assume its because the body takes a break, I mean, how much cortisol can it squeeze out before it needs a vacation? makes sense to me, but I'm not an adrenal gland.) This would lead to the potential diagnosis of Cushing's Disease (the ACTH being so high seems to be indicative of one or more adenomas, particularly in the pituitary gland. there is a slight difference between cushing's disease and the umbrella cushing's syndrome). Ok that sucks, because Hello, tumor!, but I cannot find any other references to ACTH being consistently extremely high.

The next thing is that low growth hormone. What sucks here is that GH replacement is a shot in the bum!! and it can be caused by more tumors, or adenomas if you're being nice.

Ok moving forward to my healed gastritis and ulcer, my ridiculously high dose of prilosec, and the fact that my acid issues seem even worse.. well, that can be caused by gastrin-secreteing, you guessed it, adenomas! (this should be a drinking game, if you drink). These are normally found in the pancreas and can be too small to see during tests. Biopsy during upper endoscopy will not always show their presence because they can be small and sparse.

All of these different adenomas are rare, even more rarely are they metastatic. It's very likely that none of this is true, but its so rare that what if he doesn't think to look and it is true? I only mention all of them because they like each other enough to occur together. it's a party!

I've been skidding around tumors, who wants it to be a tumor? But it really could be a tumor, it could be a little pain in the butt tumor that can be removed, or one that just gets suppressed. A decent percentage of the population are assumed to have multiple little tumors that don't cause any symptoms and go completely unnoticed until death. Some of them get a little jiggy with it.

If you can't tell, I'm a little edgy today :) It'll lessen.
 
Carrie,
I've just had an octreotide scan looking for neuroendocrine tumour specially gastrinoma . Again because of multiple gastric/duodenal ulcers and perforation despite 80mg omeprazole.
It's apparently really expensive- the radiographer said only 4 per year done at my hospital.but an easy test from my point of view with no prep. I saw gastro yesterday but had only had it completed on Thursday so no report but gastro says its abnormal in the ascending colon and specifically caecum- he is ringing me tomorrow after speaking to radiologist who specialises in reporting these scans. He is hoping it is 'just' a progression of crohns into the colon...let's hope so.
As you say waiting is bad, though I am lucky only a few days.
So you could ask for this test. Or test for gastrinoma levels but you have to be off ppi for 3-4 days before this would be reliable.
 
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thanks for your update, littlemissh. I had read about this nasty test used to see if the acth is coming from the pituitary and I was sufficiently freaked out enough to stop looking for a while :) it basically involves threading things in the femoral artery and ugh thats bad enough.
 
The octreotide scan looks for a few adenomas including acth secreting tumours. You get injected with radiolabelled hormone that the tumour takes up and then gets scanned 4 hours later and then 24 hours later. For a gastrinoma they inject radiolabelled octreotide (and according to the literature also for acth secreting tumours.)
I hope you get a test that isn't overly invasive. Good luck.
I don't think you really need to wait a week to speak with your doc. Surely he can check your results if he knows you are ringing in a couple of days.
 
Cat ~ that's just ridiculous ! Why on earth does it make any sense to stop the Asacol for a week ??
I'm very intrigued to find out his reasoning this time around !
Hang in there ~ don't let it stress you out too much wondering :ghug:

Sunshine ~ I know you're feeling awful today, but I hope you get a chance to update us soon and tell us what you found out from Shands ?
Hope you feel better soon, and hope the prednisone stayed down for you! :ghug:

Carrie ~ I don't know what to say so I'm just going to send you lots of hugs...it sounds like you're having a really rough time :(
:ghug::ghug::ghug:
 
It's 3 PM here and I haven't yet heard a peep back from my GI or his nurse. I'm going to keep taking my Asacol as usual until I get a call back!

It's raining here. Up in northern WI they're supposed to get over a foot of snow but here we're just getting rain. Which is a good thing, except whenever a rain storm blows through I get these wicked barometric pressure headaches. I get them sometimes with snow too but always with rain. I only get these headaches on the right side, just like with my migraines. The right side of my head is just throbbing! It kind of feels like a sinus headache, with pain and pressure behind my right eye, but the pain is wrapping all around to the back of my head and neck too. Yuck! All I can take is Tylenol and of course that doesn't do anything. When I get these headaches, even sleep doesn't stop them. I could go to sleep with this headache and wake up in 8 hours with the same or even worse of a headache. It's not going to go away until the weather changes and I hate that. :(

Carrie, I also don't know what to say. Although you're right, there are lots of people walking around with tumors - I'm one of them! I have 4 "focal nodular hyperplasias" on my liver, which I am told they are basically benign tumors. They're growing but slowly. My largest one is a little less than 3 cm, and I was told that if any of them gets to be 8 cm or larger then they'll need to do surgery to remove them. That scares me because I know the liver can bleed easily and I'd rather just keep the tumors and live with them than risk bleeding out! They don't cause pain or any symptoms so I'm fine with them being there.

Anyway, I'm getting off-track. Carrie, I hope the testing isn't too invasive and you can figure stuff out - and if it is a tumor, that it's benign like mine are. I don't know a lot about Cushing's, all I really know is that it's kind of the same and also totally opposite of Addison's. Both involve the adrenals but have opposite effects or something like that? If it is Cushing's, how do they treat it? I know with Addison's the treatment is a low dose of pred - would they use pred for Cushing's as well?
 
It looks like it depends on why you have cushing's. they may or may not want to remove any tumors, and if they do obviously things change with regard to how to treat it. I'm really stuck on potentially needing to stick myself with a needle. It's weird the things our minds glom onto. Sticking myself with a needle to take medication certainly isn't the worst thing that could happen.

I just woke up, I feel like I don't make sense. I'm sorry if that's really true. :eek:

It just occurred to me that part of my thyroid is enlarged, so duh, that'd be another endocrine organ with bumps. I'm bumpy.:ybatty: I never did schedule my follow-up u/s to re-measure the nodules because so much crap has been going on. My endo also didn't think the thyroid enlargement was a big deal. It still might not be. whoooo knows
 
Going to keep this brief as I am soooo tired.

Met Endocrinologist yesterday, nice man, he doesn't see what he can suggest in terms of a dx or point me in any direction, but he will do a test to triple check Cortisol is normal, he expects it will be and the odd high reading i've had is due to the physical stress my body is under, like whatever is causing the raised CRP/very high Complement tests is also caused that one. My 24 hour urine ages ago was "very normal" and only came back high on one or 2 blood draws out of half a dozen. I had a steroid shot (not really working on shoulder :( )last week so will have to wait a month or two before that can be done as it involves measuring the reaction to a steroid pill. See him again in June. He will also double check my period hormones at the same time.

Had MRA today, cannula went in smoothly at Rheumy Day Unit. Scan went fine, was brought out for an injection halfway through to calm my bowels down apparently they were moving too much, but I had one of my 24 hour flares yesterday so I am not at all concerned/surprised nor am I now thinking they've found something because of it. Tech told me through headphones I would be coming out and suddenly there she is and another man who gave the injection so a little disconcerting but as I said I am reading nothing into it it's fully explained in my view by yesterday.

Must sleep now! zzzzzzzz
 
Star, I can't remember what you've said about results. Was it just cortisol that was occasionally high or other stuff too?

I was reading yesterday that hormone-secreting tumors can turn off and on which makes them more difficult to find sometimes. I was specifically looking at ACTH secreting tumors, but it mentioned cortisol too.
 
Apart from CRP and C3 C4 (which are inflammation markers) the Cortisol is the only thing which has been occasionaly high (and by that I mean it's been normal more often than not). The 24 hour urine collection to measure Cortisol a year or two back was well within normal ranges. Every single other hormone blood test, and as a matter of fact, all the others like liver/kidney function, have been normal.

I read somewhere Cortisol is the stress hormone, so having been sick for 5 years i'm not surprised it's come back high once or twice lol. I don't think there is anything sinister behind it and am fully satisifed with what the Dr said yesterday. If inflammation markers are coming back so often raised and the Cortisol only occasionaly, I think the former is causing the latter like the Dr said (and one of those inflammation markers was massively high, normal range 150-400 and mine was 750, up from 680 the previous test!).
 
Hi Everyone! Alot has happened since I was gone! Wew, you guys are going through a slew of test. It is just crazy! On the other hand I feel like some of you are getting closer to a real diagnosis, so YAY!

Vacation was good. I had a lot of pain but at least I didn't have any major bm problems! Wew...I can handle the pain its only been going untreated for a year now!

I had a gi appointment on Monday and finally she has admitted defeat. That she doesn't know what is wrong but that she is concerned. Well I am glad that it only took us a year to get here! So finally I will get a colonoscopy in May and maybe some more testing. We shall see...
 
Space, I'm glad your doc is concerned. There's nothing worse than to go through all of this and feel like your doctors aren't taking it seriously.


Pain is the least of our worries huh? I have such a high pain tolerance that the doctors were surprised I was walking before I went in for my back surgery. I was blown off for years because I didnt' look like I was hurting enough... goes to show its not how you look.
 
@Carrie...I have an extremely high pain tolerance too! I gave brith to my son without any medication because the contractions didn't bother me...lol. And I rarely take medication for headaches, joint pains, etc. I guess it just go to show that we all handle pain differently.

The rheumy actually had the courage to say to me "well you certainly don't look or act like your in pain." I actually didn't even know how to respond and I didn't go back to him again!
 
I've had someone say that to me as well, and I responded something along the lines of, "I'm in pain every single minute of every single day and have been for years. You learn to manage. A person in acute pain does not exhibit the same outward signs as someone in years/decades old chronic pain"

It's also bothered me when 'normal' nurses (that is, the GP nurses, not the specialist ones) do not understand that extreme pain can and does cause BP anomalies.
 
Carrie and Space, I'm the opposite of you two, I've always been kind of a wimp about pain. My pain tolerance has gone up dramatically since I've been ill, but I still whimper and cry and am generally a big baby when the pain gets bad. And Carrie, I was most impressed with the PA at a recent GI appointment - she said that crossing my legs can cause a slight rise in blood pressure, so she asked me to uncross my legs before she took my BP. I knew pain and stress can cause BP to rise but I didn't know about the crossed legs thing! That might explain why I feel most comfortable with my legs crossed, as my BP is usually quite low - I'm probably unconsciously trying to get it to rise a little bit.

Sooo, a new twist in the drama of my S-I-L. She's decided to try to reconcile with her (soon to be) ex. Apparently she got some self-help book about the "language of love" or some BS like that (I am all for helping ones self, but I feel that most self-help books are total garbage). Apparently there's some quiz in this book and she and her ex both got the same score (as she put it, they speak the same "love language" whatever that means!) so she feels they can work things out. Ugh! I think she's in denial. She's always been a little bit flaky and flighty but I think she's just not dealing with reality right now. Meanwhile, her ex continues to post stuff on Facebook. He's twice posted "I am done." I'm pretty sure that means no real chance of a reconciliation! I hope my S-I-L gets her head together soon and realizes she can't fix things because of some quiz in some dumb book. I might sound a bit harsh, but I am a realist. Her ex dumped her and says he's done - I just don't see any chance of a reconciliation there!

I still haven't heard back from my GI or his nurse. I'm not going to call again though. I got the answer to the question I had - I wanted to know if I could stop the steroid suppositories, and he said yes. I'm going to play dumb on the whole Asacol thing for now and just keep taking it. Maybe they won't call me back at all and I will just continue on with Asacol. I have a few more refills which will get me through until my next GI appointment in April (or if worse comes to worse, I have a GP appointment in March and I could ask him for more refills then). If my GI does call me back then I'll only stop Asacol if he provides some really compelling reasons as to why. He seems kind of impulsive and I'm thinking this was just another of his whims. But I don't want to risk flaring if I can at all avoid it and I'm doing fine on the Asacol, so I'm going to stay on it and will kick and scream and fight to do so if that's what I need to do.

How's everybody else today? Has anyone heard from Sunshine? She posted on FB that she's doing really poorly and that she got put back on steroids, but I haven't heard anything else about her appointment the other day. Sunshine, thinking of you and hoping you feel better soon and that the steroids kick in quickly!
 
Your poor sis. Yeah, that doesn't sound promising. It's not like he is begging her to take him back. Sounds like he made this decision awhile back.

So strange about your doctor. And he only wanted you off it for a week? Wonder if it was some interaction type thing he wanted to avoid? Still, though, if it were important, you'd think he would have at least called you back. Plus knowing the history between the two of you concerning asacol, he should have known better than to not give you an explanation. ;)

Doing well. Going to Disney next week so hope things stay quiet for me.

Hope everyone else is doing pretty well, considering.
 
Have fun at Disney, May! Hubby and I are thinking of going down there in November. I went to Disney a bunch of times as a kid, and then hubby and I went as adults 5 or 6 years ago. I really liked going there as an adult! It was nostalgic but still fun without being corny. I haven't been to Disney since I've been ill, but I have heard others say that there are plenty of nice clean bathrooms, and if worse comes to worse and you need a wheelchair, apparently they're really nice about letting people in wheelchairs cut to the front of the line. Hopefully you don't need to make use of a wheelchair or spend much time in their bathrooms, but that's what I've heard others on the forum say about Disney.

Yeah, my GI gets a lot of whims. After I first tried pred (it was prescribed by a different doctor), he found out about it and gave me a little lecture and said it wasn't safe for undiagnosed people to take such a harsh med. When I told him how well it worked, though, he came around and prescribed me a 40 mg taper! Then he changed his mind and said I should only take 20 mg, not 40. Then after 6 days of me being on 20 mg, he changed his mind again and decided I should undergo Addison's testing. You can't be on pred for that testing or it'll totally skew the results, so I stopped pred after 6 days. So yeah, this is his normal way of doing things, he changes his mind a lot. It drives me crazy sometimes though! I will definitely let him know that, either in writing or at my next appointment. It seems to be his personality though so I might just have to switch doctors if I can't deal with it anymore. I don't know. I've thought about switching in the past, but am afraid that I'll get a new doc who thinks it's IBS and/or won't prescribe any meds or is horrible in some other way. The devil I know is better than the one I don't, right? ;)
 
Hi guys, I had some really awful and shocking news today, it's not something I can discuss because of privacy issues but I am probably going to disappear for a few days :(
 
Hi cat..yeah those self help books are a complete waste of time.
but she is probably gonna go through an array of emotions before she finally accepts its the end of things.

star, im hope you're ok chuck :heart:

My stomach pains are slowly returning :( boo!
And ive got my appointment through for a bladder incontinence nurse on 29th march.. so will see how that goes
 
Star, sorry to hear that! Big hugs!

Bozzy, sorry to hear the pains are coming back. That's not good! Glad to hear you have that appointment set up, having bladder issues like you described sounds just awful and I hope you can get it figured out! Good luck!
 
I have been in a really awful flare-up the past few days and still haven't gotten any better. I've thought about going to the hospital many times because this is just not getting better... but my parents think I need to just let these meds try to kick in. they aren't the ones not feeling well though.. but i'm gonna just wait to see if the meds will help.. hopefully sooner than later. I have absolutely NO energy, all I do is sleep. that's why I haven't been able to tell you guys how my appointment went on monday because i just haven't had the energy to type it all, but i might not feel better for another week, so I thought i'd just try to type as fast as I could to give you guys all the details.

this is what happened at my appointment on monday:
she came in the room and she told me that the CT scan came back normal... I started to get teary eyed, she came over to me and gave me a hug and said "no no no don't cry, I believe you sweetie, I know you're not making this up, something is definitely not right." because in my head when she said it was normal, I immediately was getting flashbacks of all the other doctors telling me it was normal and that I had IBS or that it was in my head and it just really got to me. especially since when I saw her I was not feeling well and in a flare, so I was a little sensitive.
She continued to show me results of blood work and told me in my genetics something called Stat 3 came back positive for me, and she said that means that I have the gene basically for inflammatory response to the body. She continued and said that usually when someone has this gene it means that their mast cell count is high in their colon and small intestine. She said if the biopsies from a previous colonoscopy she had stained come back with a high mast cell count, then she knew which type of inflammatory bowel disease I have. Today she called and told me her suspicions were right. My mast cell count in my digestive tract were very high, so she diagnosed me with.................
Mastocytic Enterocolitis
It's a more recent discovery, she called it the "other IBD". It's not in the small intestine OR the colon, it's in BOTH. and since my mast cells are high that's where they get the "Mast" part of mastocytic enterocolitis.
she felt my abdomen and she told me my large intestine was very inflamed and that I probably have ulcers right now.
She prescribed Entocort as my steroid to take for the next 3 months.
She also precribed like 5 other meds that are supposed to help stop the actions of the mast cells. She said this is just like crohn's and colitis, she said it's IBD and it's something I'll have forever, and that i'll have to be consistent with meds to try to keep it under control.
So far, I feel like all I do is take meds, and I haven't been feeling better at all yet. I'm still having diarrhea even though i'm on steroids. but i've only been on them for 2 days. I am very very tired all the time too. My knees are swollen from joint inflammation so it's hard to walk on, and my throat and eyes are inflamed too. It's so hard :( everything hurts and i'm so exhausted, and nothing is getting better... but i guess i just gotta wait it out until things start to kick in. I think my body is just exhausted from all the meds and all the pain i've been going through. I went to the bathroom 30 times the other day... it's just been awful.
I'm very glad to have a concrete diagnosis for real this time! a diagnosis that was from all the abnormal tests i had in the past, and genetics, and a BIOPSY that was stained to find out more detailed information about my intestines... feels great to have actual results from biopsies that everyone before this said were "normal"... which are obviously not! thank you to my new doctor at shands. she's amazing. truly the best doctor i've ever had by far. she's so smart. She even sent me an article about it because I don't know much about it, she said it's an inflammatory bowel disease it's just one that most people don't think about looking into which is why it's so "rare". so ask your doctors about it!!!
 
Sunshine,
Thank you for taking the time to update everyone even tho you are feeling so awful :(

I'm glad you FINALLY have a solid diagnosis and can begin the journey of good health ! It may take some time, but with the proper meds and your great positive attitude, you WILL get there ! :thumleft:

This is a thread that David has started on Microscopic Colitis and such (he has a similar form of IBD that you have)

Mastocytic Enterocolitis

big hugs and hang in there sweetie !!
 
Sunshine, I have a friend with mastocytosis, I think I've mentioned it before. She has a public blog that she updates somewhat irregularly: http://lifewithmastocytosis.blogspot.com/

Obviously her mast cell disorder is different, but the mechanism is the same. it's kind of like having allergic reactions to nothing or anything. did your doctor prescribe you some histamine blockers?

I'm so glad you got an answer :ghug: !!
 
I'm so glad to hear that your doctor found something!!! And that now you can get the appropriate treatment. That is good news, Sunshine! I hope you're feeling better soon!
 
@Star...I hope that it all works out! S orry you recieved bad news :(

@Sunshine...Yay! Finally you have a diagnosis that means you can start to heal. Just remember it will take time. It has taken years for your body to get to its current state of distress, it could easily take just as long to heal! Keep your chin up and know that you have an awesome doctor who is going to take care of you!

@Bozzy...Feel better soon!

Last night I felt the beginning of another flare, low and behold early this morning 3AM there I am awake with severe pain and the toilet. *sigh* Another round...On the plus side, I was accepted into a juried art show out here in NM for my metal clay jewelry :) I am super excited about that!
 
Thanks so much everyone for your kind words :ghug: Still in shock but getting there. Not me or my family this time but someone we know well, something pretty bad and sad happened is all I can say.

Sunshine, I am glad you have a dx but obviously sad it's turned out to be something not so great. I think now with a dx you have won the battle and on the road to winning the war. I hope the meds kick in soon. Just take lots of rest and sleep all that you need. Your body has been through so much.
 
Sunshine! You got diagnosed! Congrats! I know things are really rough now, but give the meds time to work. I was on Entocort for 7 months as you probably know, and it helped me immensely and put me into remission. I won't lie, I still had some rough days on Entocort. But I was so much better on it than being uncontrollably ill and on no meds. (I was averaging 1-2 bad days per week while on Entocort but I was having probably 4-6 bad days per week on no meds.) And it put me into remission so I am glad I was on it even though it took 7 months to get there. It does take time to kick in, for me it was about 9 days and I've heard others say it can take a few weeks or even as long as a month. So just keep taking it and you should start feeling a difference soon. Hang in there! You finally have a name for the monster, now you can fight it!

Star, it's still very upsetting and stressful even if it's not directly you or your family that the bad thing happened to. I can definitely relate, the stress of my S-I-L's drama and then my aunt's horrible injury did not do good things to my guts! I had a really hard time sleeping and things were not so happy in tummyland. Try to take care of yourself during this tough time. Get as much rest as you can and de-stress as much as you are able to, even if that just means taking 5 minutes to do some deep breathing. Personally I like getting massages when I can afford them to de-stress, but if I am poor I might just take a hot bath with some candles lit and soft music playing. If I'm feeling upset and I'm not able to take much time for myself, I find that getting myself a little treat (my go-to is a new bottle of nail polish) does wonders for me too. Hang in there! I hope the situation gets easier to deal with as time goes by. Hugs!

Space, sorry to hear that you're in a flare now. That's always such a sinking feeling, like oh no, not this again! It's just so exhausting, I'm sorry to hear it and I hope this one doesn't last long and isn't too severe. Congrats on being accepted into that art show! I'm glad there's a small bit of good news with the bad.

As for me, I have been off the steroid suppositories for 2 days now and feel much better. I can sleep again! I'm still taking Asacol as I still haven't heard back from my GI. My barometric pressure headache is gone but we're supposed to get a new storm (4-8 inches of snow, yuck) tomorrow so I'm expecting to get another headache then. Other than that, I'm doing well. I spent some time cleaning out my bro's old room, I think all his stuff is now out of my house and the guest bedroom is looking good again! I need a few things like a new rug and a trash can and some more decor items, maybe a small TV if I can find a cheap one on craigslist, and then my guest bedroom will be really nice. Oh, I don't know if I told you guys this already or not, but I got some good news about my aunt too - she's been discharged from the hospital! She's walking with a walker and seems to be doing really well, all things considered. She doesn't have a halo thing either, just a neck brace. And she seems in really good spirits. Pretty good for a lady who broke her neck less than 2 weeks ago and had surgery less than 1 week ago!
 
Sunshine, thanks for this detailed update again. I hope you feel better soon. I have already asked my son's new GI to stain for mast cells in his colonoscopy we plan to have soon. Do you happen to know all of the blood tests that your GI ordered? I know the stat3 genetic mutation was positive ... I am just wondering what other unique types of blood tests she ordered.
Thanks!
 
Dannysmom-- She didn't give me the other blood works, but I did remember she did a lot with genetics. I'm so sorry I don't have the other work ups, I just looked through all the paper work she gave us, and I guess she kept it all. :( ahhh.. so so so sorry... !! :(
 
Sunshine, I am so happy you have been given the right diagnosis this time! That's fantastic! Now its time to try and take it easy and let the meds do their magic, how ever long that may be.

Cat, That is so weird that your GI wanted to take you off the meds for only a week! How weird.....I hope that all gets straightened out!

Star, I'm sorry about the bad news. :(

My rheumy appt went really well yesterday! It was a German clinic that americans get sent to very often, so it wasn't as awkward as I thought it would be. He examined all my joints, which aren't swollen at the moment, and asked me about everything and looked over my symptoms and my records from my old rheumy. He gave me a treatment plan of both pred and plaquenil long term. He wants to have steriods in my treatment plan long term to try and get it into remission. Its only 5mg so that the side effects will be close to nothing. When Stuart and I left we were sighing with relief! I will get the meds from the clinic on Monday after my appointment with my GP. I'm really hoping being on low dose pred for months on end helps get back to normal!
 
hi everybody.. so my colonoscopy biopsy results have come back clear. which is great.
but it also involved a very emotional phone call from me to the GP.

of course i dont want to have IBD, but at the same time i wanna know whats happening to me! i was upset on the phone and all she could talk about was anxiety!!!
so im seeing my Gp again next week. they think ive got fibromyalgia.. which would explain the bladder problem i guess.
so will have to wait and see!

hope you guys are all well :heart:
 
Allie, that's great news, I hope the pred and plaquenil can get things calmed way down so you can get lots of relief! Hoping you and Sunshine can join me in the remission club very soon!

I got the finally Asacol thing straightened out with my doctor, apparently it was just a big misunderstanding. At my last appointment, I told him about the frequency issues I was having (I wasn't having d anymore, but was still going 4 to 10 times per day, and having solid stools that frequently was causing anal pain and hemmies). He had asked me to track the # of bowel movements I had each day for 10 days, and report back to him with the results. So I did that and didn't hear anything for awhile. Then I started taking psyllium husks and that caused my frequency issues to get much better, I now go 2-4 times per day and no more anal pain and my hemmies are nearly gone. But when I called my GI to see if I could stop the suppositories, which I had been prescribed for the hemmies, he apparently went back to my data about tracking my stools, and he thought for some reason that I was having d 4-10 times per day (even though I told him at my appointment that it was solid stools, I haven't had d since I've been on Asacol). Asacol can apparently cause d to worsen in some people so my GI thought that was the case for me - that's why he wanted me to stop it for a week, to see if it'd get the d to stop. But since I wasn't actually having d, and I've more or less fixed my frequency issues on my own, he said I can stay on Asacol. Phew! That's a good thing! So glad I cleared that up and can stay on Asacol. :)

Bozzy, I saw your other thread - so your doctors are saying all your symptoms are caused by anxiety and maybe fibro? But you have a raised CRP? That's not right, I don't believe fibro would cause a raised CRP and anxiety definitely wouldn't! Are you able to get a second opinon from another doctor? Because it sounds like your current doc isn't taking you very seriously. I've suffered from depression and anxiety too because of this illness, but some doctors just can't get it through their heads that anxiety/depression isn't the root cause of our symptoms, it's just a natural response to being so ill all the time! I don't doubt you've got some anxiety, but I also know it's not the cause of your digestive woes, just a response to them (probably also a response to not having answers and not being taken seriously). Hang in there, I hope you can find a doc who takes you more seriously!

Sunshine, does your doctor have an online thing where you can see your records? If so, you might be able to look there and find the names of the tests you've had. You could also call or write to request a copy of your medical records, it's your right to have a copy of them. (Some doctors will charge a fee per page, I believe my doc charges 10 cents per page to print a copy of my files, but they can do a summary rather than the full records so that it's not very many pages.)

How's everybody else today? I'm doing well but not looking forward to the snow. We're supposed to get hit with a winter storm but nobody knows how bad it will be. A co-worker just told me he heard 2-4 inches of snow, but on the weather report this morning that I saw it said 6-8 inches! And yesterday they were saying 4-8 inches. So who knows! At any rate, my dog will be super happy. :) She just loves snow, and she finally got her stitches out so she can run around in snow again without me worrying about her bandage getting wet. Fresh snow is Lily's favorite thing ever, she runs all around with her mouth open and scoops up mouthfuls of snow as she runs. It's so cute!
 
SunshineSmile said:
Dannysmom-- She didn't give me the other blood works, but I did remember she did a lot with genetics. I'm so sorry I don't have the other work ups, I just looked through all the paper work she gave us, and I guess she kept it all. :( ahhh.. so so so sorry... !! :(
Click to expand...

Thanks for checking. I researched and saw that the new Prometheus IBD SGI test (replaced the older IBD7) includes the STAT3 genetic test you had and a few others:
http://www.prometheuslabs.com/Resources/IBDDiagnostic/IBD-sgi-Product-Detail.pdf

Thanks again! Feel better!!
 
I feel so ridiculous right now, but I have to get it out. I'm in so much pain I've been seriously considering the ER, but I'm trying to manage it with my arsenal of pills. I got my period about 4-5 days early, and it's k i l l i n g me. everything from the bottom of my sternum to the tops of my thighs. I can't find anything relating them, but I wonder if it's some kind of delayed reaction to the insulin tolerance test. can't stress bring on your menstrual period?

seriously, consistently an 8-9 and the pulses of cramps are >10. It's so bad I can't feel any of my chronic pain.
 
Thanks Cat! I am a little worried with being on pred this long term (he has no plans on taking me off of it, and I don't see him again for another 4 months), but with it only being 5mg I should be fine I guess. We shall see!

Carrie, I'm so sorry about your pain. :( The ER, for us spoonies, is there for pain management. My doctors have always said if my pain is too much for tramadol I need to go to the ER. They can't help us figure out whats wrong really, unless its something they are used to fixing, but they can help the pain! I hope you feel better soon!

Stuart left again today. He will be gone until the end of the month. We were both a mess last night. He usually isn't emotional about leaving me, but last night he was crying and in bed he stayed wrapped tight around me. On top of that my plaquenil RX ran out too early (they refused to give me more meds), so I have no meds until Monday. I'm just trying to take it easy, while keeping busy to distract me from the fact this house will be empty for the next three weeks. Atleast when he gets back we are going on a cruise......a vacation I'm actually excited about because we will be on a boat where all we can do is relax! Stuart booked a larger room on the ship, with a couch and a balcony, so that if I am too tired to run around the ship we can just watch TV and relax in our room. YAY!

I hope everyone has a good weekend!
 
Hi Everyone

I am having a rough week with my stomach and bowels :(

Does anyone here suffer from migraines or know if that can be a symptom of IBD?

Thanks
 
carrie - stress totally makes a difference with your period. not surprised at all. try to take some hot baths. chamomile tea helps, too.

allie - that sounds like the perfect vacation!
 
Sunny Days, migraines sure seem like they can be a symptom of IBD. I never got migraines - I literally had one migraine as a teenager and that was the only one I had from age 0 - 29. Then this gut illness hit me just before I turned 30, and suddenly I was getting regular migraines, so I am assuming the two must be related. Make sure to tell your doctor about the migraines, they might be able to give you something like Amitriptyline to help prevent them, or they could possibly give you something to take to stop the migraine once you feel it starting to come on. I'm on Amitriptyline to prevent my migraines, and it's working pretty well. I've only had one migraine so far in 2012, and that was my fault (I stupidly had some caffeine and that triggered a migraine).

Carrie, I don't know if that test could trigger such pain, but I hope you feel better soon! I second flower's chamomile recommendation. I drink a lot of chamomile tea around my time of the month and I have noticed less cramping. But if your pain is at a 10 it might be time to go to the ER. The pain might be related to your test or it might be something else like an obstruction. Better safe than sorry! Good luck, big hugs, thinking of you and hoping it gets better soon.

Allie, I'm sorry to hear your hubby's going away again, but I'm glad you have something nice to look forward to when he comes back. I've never been on a cruise but that sounds nice, I hope your health cooperates and you're able to do more than just watch TV in your room. In the meantime I hope you do okay until you can get more meds! As for the long-term low dose of pred, when I was being tested for Addison's I did some reading. Apparently the adrenal glands make approximately 7.5 mg of cortisone naturally per day. So if you're on a lower dose than 7.5 mg, your adrenals will still have to keep working to make that extra amount to get your body the total of 7.5 mg. So, your adrenals will keep working, although at a lower rate than usual. They won't shut off completely though so you should probably be okay even on a relatively long-term run of 5mg pred. That's just my limited knowledge and obviously I'm not a doctor, but I would think 4 months of a low dose of pred should be just fine.

How's everyone else today? I'm good. I'm trying a new supplement drink. I love Ensure, but I need to lose a few pounds. I put on an extra 5 lbs when I was on the steroid suppositories and I've got a bit of a jiggly belly that I need to lose! I found these "Biggest Loser" drinks at Walgreens, they have 60 fewer calories and a bit more protein than Ensure does so I'm giving those a try. They don't taste very good though, although as I recall Ensure was an acquired taste so maybe these are too. As long as they don't give me d like the vanilla Ensure does. How funny, I just looked at the packaging - it says "Milk chocolate shake, naturally flavored with other natural flavor". Ha ha, who wrote that? :p
 
Flower, I tried Boost a long time ago and really didn't like the taste. The BL drinks taste better than Boost but not as good as Ensure in my opinion. Part of me wonders if I should just stop with the supplement drinks altogether now that I'm in remission and take a multi-vit instead of getting my vitamins in a 250 calorie drink. I weigh about 145 lbs right now and I'd like to be more like 130-135ish so I don't need to drop a ton of weight but exercise alone isn't shifting my weight any so I do need to look more closely at my calorie intake. I don't eat breakfast though, I've never been able to stomach solid food first thing in the morning without getting some major nausea, so I've been having a supplement drink for breakfast each morning. So I will probably continue on with the supplement drinks for breakfast, just not sure if I'll stick with Ensure or switch to something slightly lower-cal.
 
Thanks for the info Cat! That's exactly what my rheumy was trying to explain to me in broken English, you filled in what he couldn't seem to say. :) He said as long as I'm on 7.5 or less it shouldn't cause any harm!

The vacation is really very exciting! All of our vacations here in Europe haven't been relaxing type vacations, but vacations where you are visiting places and using a lot of energy. They have been very hard! This one is a relaxing vacation with visiting in there as well. Its an 8 day cruise, on a fantastic ship with all kinds of stuff to do (clubbing, swimming, shopping, gambling, etc), and we will be stopping at all kinds of neat places. Tunisia, Africa; 4 places in Italy; Spain; and France! I'm sure with three more weeks of plaquenil and pred I will be able to chill with my hubby on the boat and then go on the excursions as well. We are so excited! The vacation is really cheap since we don't have to fly from the states, just have to drive down to Italy. We thought it was $800 a person at first, then they told us it was $800 for BOTH of us, and includes EVERYTHING on the ship except alcohol and internet. So awesome!!! :)
 
Carrie, I'm so sorry to hear about the cramps and pain. I'm no stranger to that level of pain from a period. Here's some coping mechanisms I use when my endometriosis acts up: hot baths, heating pad (you can alternate with ice packs also...to create a vaccuum effect to draw the extra blood away from the abdomen), relaxing music to help you focus, chamomile tea, rocking while on hands & knees (kind of like the move while you are labouring) and breathing exercises...also similar to when you're in labour.

Good luck, i'm really sorry that the meds aren't helping. Also ask hubby or someone to put pressure on lower back or to massage your thighs & back. Take care. Hugs.
 
Eventually the pain started to calm down, it was still bad when I went to bed, but not excruciating. I'm sore today but so far *crosses fingers* my cramps have been mild. I took yesterday off as a vacation day because I'd been so tired all week. I'm so glad I did because it turned out that I slept the entire day except for when I was dying from the cramps. I went to bed around 11pm last night and got up at 2pm today. I suspect there is a nap in my future today as well.. I've mostly been eating zone one protein bars and popsicles. I'm slowly working my way through my chores list. as in - I cleaned the shower and replaced the curtain! my list is pretty small to be honest. next up - the dishes!! ooo

Allie - I can't believe that price, awesome! I hope you have a great time :)
 
Dannysmom, yes that was the IBD test she did!!! Sorry I couldn't tell you myself, I do have the online thing to check for results and stuff BUT they gave me the wrong access code so i have to wait for another one in the mail! So I can't check any of that stuff yet. so sorry! But you found it! :) I'm so happy you did!! Now maybe your son can get the same genetics and such checked! Maybe they will find something like they did with me through the genetics!

Carrie, PLEASE go to the ER if the pain is that bad, I am so worried! :( I hope it gets better!!!! <3 *hugs!

I'm still not feeling well, but just been resting a lot. yesterday i went out with some friends to go mini-golfing but I think that might of been too much too soon. but I'm coping with it today, just by resting with the heating pad and taking it easy. I got a new pill case and I'm going to decorate it so it's not so scary anymore. I hate going to the pill case.. makes me nervous idk why lol. so i thought if I decorate it then maybe it won't be so scary anymore haha :p but we'll see! lol
I might try to make a pillow too if i don't fall asleep again! I have been so exhausted every second of the day. it's ridiculous. :/ the meds don't say they cause drowsiness or anything, but I feel so exhausted that I can't even do anything lol... it's crazy.
I finished my online class last night though and so I'll be receiving my AA in the mail soon! and then gotta figure out what I want to go to school for next..lol. that's tough because I want to do something that won't affect my IBD too much, because stress can bring on flares.. I'm interested in Radiology, so maybe something with that.

Have any of you had to change the career you wanted to do because of your illness?? Or am I the only one :/
 
ughh I can't believe how achey and sore I am!! :( I keep trying to stretch it out thinking it'll help but nothings helping. And my tummy has a bunch of sore spots still that keep randomly hurting. I told my tummy last night if you act up, you're in biiiiiggg trouble. well, now it's in big trouble. wonderful lol... :/
 
I cleaned the kitchen and then the cramps started to come so I had some tramadol and flexeril. I probably waited too long to start treating the pain, I had been going off my tramadol to kind of reset things, and I slept all day yesterday. I am not going to make that same mistake today. We'll see how it goes.

Sunshine, you're probably going to be tired until you adjust to your meds. Congrats on getting your degree :) :) I've had to change my career path slightly due to being sick. I had to drop my management position, and I focus on large long term projects which is less stressful. Technically speaking, I can do my job from home if I have an employer who supports me in that so other than having to dial down my aspirations greatly, I don't have to change careers.
 
@carrie and sunshine. i know exactly what you mean.. when you start to feel a bit better.. you do more things and bam! you soon regret it. its hard not to do things when you feel ok'ish.

im unsure about the fibromyalgia discussion my GP wants to have next friday. my step mum has it.. and i am no where near as tired as her! she practically sleeps all day.
but ive written a list of all my symptoms so im sure not to forget anything.

do you think i sould ask them to check my vitamin levels? (ive NEVER had them checked before) maybe being slightly deficient in something might be causing my tiredness? (as im not anaemic) and if it turns out some vitamin supplements work, then that'd be awesome!

ps: i have been subject to the odd migraine or two - with tunnel vision. but it seems to be hormone related with me. as i only get them on birth conrtol and when i was pregnant
 
thanks Carrie :)
hopefully whatever I decide to do will be okay with the tummy.

Tonight has been just awful. been going to the bathroom so much. :(
 
...not AGAIN!

ugh..I had the worst night again...awake with gut wrenching pain ALL night. to and from the bathroom. finally dozed off after 4:30am and had to get up at 5:20 and get ready for work. this sucks. and the dicyclomine stopped working months ago and my tramacet didn't even work. thank goodness i see my dr. on wednesday so i can ask him for something that'll just knock me out so i can get some sleep, so i'll be able to work.

gotta go...i hope everyone's day is much better than mine began. :angry-banghead::angry-banghead:
 
I'm so sorry Ever. Those nights are the absolute worst. :( You climb into bed after feeling like you have thrown up the wrong way completely exhausted! Did you wake up with the D? That is NOT a symptom of IBS. When you go to sleep your guts are suppose to stop moving. I would mention all of this to your GI.

I just got done with my GP. She gave the scripts for the pred and the plaquenil, but she said that the MCTD diagnosis isn't very solid yet. But she still hopes the meds help get me back to normal. She also made it very clear that the pred will not be a long term solution. She doesn't want to see me again for three months, after my next rheumy appt, but I will probably have to go see her sooner than that for more tramadol (only have about two months left). At this point I truly don't think I will have clear healthcare and a clear diagnosis until I settle down with the same team of doctors for awhile! This sucks!
 
@Ever, dicyclomine never worked for me! In fact it made me worse, far worse. Talk to your doctor about it, there certainly isn't a reason to take a drug that does't work.

@Allie, sorry you have to spend the next few weeks alone! Sounds like your vacation will be wonderful.

@Carrie, I really hope that your pain lessens soon.

@Sunshine, hang in there! You shouldn't feel bad about resting, your body has been through so much...Thanks for sharing your outcome it really is insightful.

I am still in my flare! Not the first one ever and certainly won't be the last...Just keep going! I saw my Ob/Gyn last week because I am also having issues in that arena too. I go for u/s tomorrow in search of ovarian cyst or fibroid masses. Hopefully it is neither!

I have my colonscopy finally scheduled for first week in May! I am know second guessing this current eating habit that I am on, the SCD (read Breaking the Vicious Cycle). It's supposed to be a natural way to heal gi inflammation, I just hope test don't come back negative because of it...

I do have a second opinion next week with a doctor from UNM. I am hopeful that he will give me some insight into what might be wrong with me.

I hope you all hang in there!
 
Ever, Carrie, Space, Sunshine - :( !! So sorry to hear you're all doing so poorly lately. I hope things get better very soon. Hugs to all of you! Group hug!

Dicyclomine doesn't do much for me either. I've probably mentioned this before, but I only ever take the stuff during my time of the month as it's either that or Tylenol for the cramps. It works about as well as Tylenol (in other words, not very well, but it does take the edge off). I think it's one of those meds that works way better for IBS than IBD so it's not surprising to me that it doesn't seem to do much for any of us here.

Bozzy, you should definitely get your vitamin levels checked, especially if you've never had them done! Vitamin D and B12 would be good ones to get checked as those are typically low in IBD patients. Ferritin is a good one to check too. Check all your vitamin levels if they'll let you! It'd be good to know what's what especially since you haven't had them looked at before. Get stuff like your electrolytes checked too - personally my sodium is often low, especially when I flare. If your sodium is low and your potassium is high it could indicate something like Addison's disease so those are good ones to have looked at.

Allie, not to be a downer, but I've had the same team of doctors looking at my case for over 2 years now and there's still not a clear diagnosis in sight. I've been with my current GP since I moved to this city, nearly 10 years now! And I've had the same GI since I've been ill with this probable IBD. So, having the same team of docs long-term unfortunately doesn't guarantee a diagnosis (and like Sunshine found, going to a zillion different doctors until you find a good one can sometimes mean a diagnosis right away with a brand new doc!). I hope that, new doctors or old, you can soon get a solid diagnosis. In the meantime, I hope the meds work wonders and quickly so that you can really enjoy your cruise!

I'm doing okay today although I'm not quite sure what's up. I usually run for 4 or 5 minutes on the treadmill to warm up before my workout. Today I started jogging on the treadmill and just felt so wiped out immediately. I could barely go for 2 minutes before I had to stop and walk and I felt exhausted from that 2 minutes! My lungs have been a bit weird lately - I started another thread in the Extra-intestinal Manifestations forum last week, I've had this weird gurgling and feeling of stuff in my lungs off and on. I haven't had that feeling today, although my nose has been itching like crazy. Astra mentioned she knows someone with similar symptoms and the cause of his issues is a mold allergy. Well, I felt the gurgly lungs at work on Friday, then okay at home during the weekend - fine, actually. And now back at work again and my nose is itching and I suddenly can't jog like I used to - I'm wondering if there's something I'm allergic to at work?? Something in the ventilation system maybe? I don't know but this itchy nose is bugging the heck out of me! And if it's affecting my lungs to the point where I can't jog properly, that's definitely no good. I think I'm going to start taking Claritin just before I get to work and see if that makes any difference. I do have allergies but they've never affected me like this before (usually I get watery eyes and a drippy nose, not lung issues and an itchy nose) so I hope allergy meds will work for these symptoms.

How's everybody else doing? Anybody else doing fun crafts? Sunshine, I saw your pillow that you made on FB, super cute! I've been making a few scarves for a project at work (donating scarves & hats to people undergoing cancer treatment) and I just started a new blanket for my newly re-claimed guest bedroom too. My guest room is looking nice (well, as nice as a guest room with a craigslist futon and Goodwill furniture can look). I think I've removed all signs of my brother from the house! :) It's once again MY house and MY guest room, yeah! (Well, hubby's too of course.)
 
Cat, thank you! :) I loved my little pillow I made! :) It turned out pretty good! Today I did too much I think... I cleaned, cleaned, and cleaned. now everything is clean but I am not well. Had D tonight after dinner... I'm going to seaworld on wednesday, and I'm hoping for good tummy weather (lol)... if not it's going to be a long day...

Thinking of a new project to work on too... hmmmm... :)
 
Thanks Crohn's mom!! :) I didn't even feel very well when I made it! lol Now i'm just relaxing because my joints are getting inflamed again! stupid arthritis and bad tummy!
 
Sunshine, was your pillow something you sewed or was it a non-sew one? I've seen non-sew blankets so maybe you could try one of those next? If you sew, the sky's the limit! :) Personally, I was inspired by a blog where this girl buys old ugly clothes and sews them to make them cute and modern. I recently bought a dress at a garage sale. It had this ugly ruffle around the neckline but otherwise looked like it could be cute (and it was only $1). So I bought it, ripped out the seam where the ruffle was sewed on, re-stitched the neckline so it looked nice, and now I have a really cute dress for summer! So if you sew, maybe look through some old clothes and see if you could give them new life with a few sewing tweaks. This is the blog I'm inspired by:
http://www.newdressaday.com/

Oh, and I will watch your video when I get home tonight. I'm intrigued by the idea of an IBD workout routine! Is it lots of squats over the toilet? ;)

I had my GP appointment today, and it went well. He gave me a booster shot for tetanus and pertussis, since I can't remember the last time I had those immunizations done. Did a few blood tests, I think he mentioned checking my cholesterol as that hasn't been done in awhile, and checking my creatinine to make sure Asacol isn't damaging my kidneys. I got Imitrex for my migraines and my lungs got a clean bill of health (I've been having a few lung issues lately but it seems to be due to allergies and Claritin has cleared things up pretty well). I was pretty pleased that the guy who drew my blood found a vein easily on the first try so hopefully I won't have a bruise tomorrow! Although I was stuck once in each arm, one arm for the booster shot and the other arm for the blood draw, so I am guessing that at least one arm will be sore tomorrow! The booster shot just went into the arm muscle, just like the flu shot, and I'm always sore after getting my flu shot so I presume that arm will be sore. It feels a bit sore already.

So other than a little arm soreness, I'm doing well! I feel like it was a good GP visit, and I should get my blood results soon through the online thingy that my doctors have. Hopefully Asacol is being kind to my kidneys - my GP did say it's quite rare for Asacol to do kidney damage so I'm guessing that'll be fine.

How's everybody else today? Enjoying this lovely weather? It's 55 and sunny - it had been snowing for days and today all the snow is melting, I love it! Sunshine, I hope you have fun at Sea World! It's been many years since I've been but I remember that I liked feeding the sting rays (don't worry, as I recall they have their barbs removed so they can't actually sting you). Hubby and I are thinking of planning a trip to Florida for my birthday in November if we can afford it (assuming I'm still in remission then), so you'll have to let me know how Sea World is and if you'd recommend that I go. It's probably been 20 years since I've been so I don't remember much except for the sting rays!
 
Cat, we had good weather here today too! It was very sunny, with very little cloud cover, which is VERY rare here! I took advantage of it and took Kallie for a walk, which now I'm kind of regretting it because that and an intense play rehearsal has my pain at a 9 and I'm not liking it. :( How did you handle it when you started to get better? I'm slowly on the mend and I know I am jumping the gun on how many spoons I'm trying to spend. But when I try and rest like I have the past 1.5 years I get stir-crazy and still jump the gun (like today). Any advice?

I've had a REALLY busy week so far. Monday with the appt, errands, and practice, today with trying to rest, it failing, then walking the dog, working on my business (new item up today! Really cute! ;)), then 3 hour practice in heels and dancing like a maniac, then tomorrow I'm going to drive 100km away from here to do tons of errands at a huge army post that has a huge grocery store, PX (kind of like a walmart), and craft store. Ugh!
 
Allie, being on steroids can definitely make you want to be very proactive! I know that being on pred especially gave me lots of energy and I did a lot of activity like cleaning. When I was on Entocort I didn't have as much crazy energy so that was a little bit easier to slowly ease my way back into being something of a normal human again. It's great that you're being active, but you might have to make yourself slow down a little bit now and then especially if you notice that all the activity is really affecting you negatively. Just listen to your body (and try not to listen to the steroids). As I was heading down the path to remission, my body still had a way of letting me know (in the form of feeling like crap) when I was doing too much too soon. Hopefully you're on the road to remission in which case you'll slowly be able to do more and more as you feel better and better, but just try not to do too much all at once. Remission isn't an overnight thing as I have learned. I was on Entocort for 7 months, and even as I was coming off the Entocort my CRP was a little bit high (17). So I don't think I was quite in remission then, it was still a process of my body healing and then getting used to being off steroids.

I think there's various levels of remission too, although this is just me. My GI said I was in remission shortly after I stopped Entocort (when my CRP was 10) although I was still having some symptoms. I was having d, nausea, etc at least once per week. After awhile I was put on Asacol and then the d stopped and the nasuea became less frequent. I was still having GERD issues and frequency issues (formed BMs, but still going many times per day). Adding psyllium and Nexium took care of that stuff and now I feel like I'm in really good remission, and my body is responding to being in good remission by allowing me to eat a few of my trigger foods. Stuff that I couldn't have when I wasn't in as good of a remission, if you will. I couldn't eat mild salsa when my GI first said I was in remission, but I can now. So I feel like I'm in a better remission than I was in the past, if that makes sense! For awhile I was wondering if I really was in remission at all because I was still having symptoms. Now I am sure I am in remission. So I guess, for doctors, good bloodwork = remission. But that's just like the first level for me, symptom reduction and ability to eat trigger foods and not having to worry about spoons are all also components of remission that didn't happen right away. I'm really rambling now but I hope I'm making sense! Long story short, remission is a long process that is complicated. :)

Have fun shopping tomorrow! Craft store, I'm assuming you're getting some yarn? I just bought some cute yarn to make a new blanket for our guest bedroom. I finished the blanket I was working on (for my dad) and I made 3 scarves to donate to cancer patients. I love crocheting during the colder months, especially making a blanket because I can use the partially-made blanket as a lap blanket while I'm working on it! It's warm and comfy and productive, ha ha. :)
 
Thanks for your perspective! Even though I haven't experienced remission yet, from what I have read from the patients point of view it seems hard to say "oh you are in remission" just by test results. I know with AI illnesses like mine it will be ANA being positive that makes them aware that it is active, but even with ANA being negative you can still experience symptoms. I think it seems better to just by the symptoms.

I just started the pred today, so its the plaquenil that has helped so far (confirming a lupus or lupus-like disease). I was a workaholic before I flared, so I think I'm feeling the urge to work with the little energy I've gained back. Once the pred kicks in I'm sure it will be more of a fight. :p One thing I'm really happy about this new-found energy is I've been crocheting a lot more lately, and I'm hoping that my sales pick up. I had so many orders when I was in the states from close friends, and since I got back I haven't gotten any! :( Hoping to use my new energy to change that. :) I plan on getting at least 2 or 3 blankets worth of yarn tomorrow (that's 12 - 18 skeins) and then a couple extra skeins to fluff up my inventory of yarn for random things I come up with on the fly. I know that sounds like a ton of yarn but I want to take advantage of being there!
 
Cat, I'll have to check out that blog!! :) Sounds SO interesting. The pillow I made I did not sew! I am thought sewing a purse, I am almost done but I have to just figure out the straps! lol
 
It doesn't sound like a ton of yarn to me. :) I have 2 laundry baskets full of various half-skiens or scrap yarn for making scarves, and I also have 8 skiens right now for the blanket I'm making. I really like hitting garage sales in the warmer months, sometimes I can find really cheap or even free yarn at garage sales. I love finding free yarn! :)

I think as far as remission goes, my doctors were going by my symptoms as well as blood work, but only barely so. Basically they were saying, you haven't flared since being on Entocort and your bloodwork looks good so you are in remission. It's true I wasn't in a flare, but I didn't feel like a well person either. I do now but it took nearly a solid year to get to this point (I came off Entocort in April 2011). At this point, I am always aware that I shouldn't do things to piss off my guts (I still avoid some trigger foods like nuts and seeds) and I am always aware that I could flare up again at any time. It's always in the back of my mind, but it used to always be in the front of my mind and I think that's the real key to knowing I'm in remission. I'll always be aware that I've got an illness, but when I'm in remission it's not constantly in my thoughts. It's more on the unconscious/subconscious level than something I'm constantly conscious of. Anyway, I hope you can join me in remission-land soon! It really is wonderful. I know I complain a lot about little stuff, but really, my complaints nowadays are absolutely nothing compared to when I was ill and suffering all the time. I'm just a big whiner nowadays. :p
 
Sunshine, do you have a sewing machine? Or are you making the purse by hand? You can buy purse straps at craft stores if you're having trouble with that part, you can buy handles or just strap material and sew it on. I know there's no-sew blankets that are probably really similar to the pillow you made, maybe you could find the right fleece fabric to make a matching blanket?

Okay, this is getting really off-topic and I apologize, but while we're talking about crafts - anybody else have a sewing machine with quirks? I mostly love my sewing machine but it will just not do button holes! It has that stitch setting and I put the button hole foot on and set the tension properly and do everything right, but it just doesn't work. I googled instructions and videos to make sure I was doing it properly, and I showed my hubby as he is more mechanically minded than I am, and from what we can tell I did everything right. So my machine is slightly broken or just quirky or something! So frustrating! I don't want to get a whole new machine just to do button holes, but on the other hand I can't sew button holes at all as things are. Hmph!
 
I am sewing the purse! :) All that is left is the straps! I'll have to go buy some strap material and sew it on. It's my first purse, it's pretty cute so far! :)
I think I might make a blanket to match my pillow! that would be SO cute! :)
 
Cat-a-Tonic said:
Flower, I tried Boost a long time ago and really didn't like the taste. The BL drinks taste better than Boost but not as good as Ensure in my opinion. Part of me wonders if I should just stop with the supplement drinks altogether now that I'm in remission and take a multi-vit instead of getting my vitamins in a 250 calorie drink. I weigh about 145 lbs right now and I'd like to be more like 130-135ish so I don't need to drop a ton of weight but exercise alone isn't shifting my weight any so I do need to look more closely at my calorie intake. I don't eat breakfast though, I've never been able to stomach solid food first thing in the morning without getting some major nausea, so I've been having a supplement drink for breakfast each morning. So I will probably continue on with the supplement drinks for breakfast, just not sure if I'll stick with Ensure or switch to something slightly lower-cal.
Click to expand...

Hey Cat,
For breakfast I drink the chocolate flavored Kroger version of the Slim Fast shakes (cheaper that Slim Fast and just as good). They are filling but don't bloat you up- 170 calories, 5 g fat, 10 g protein, and 5 g fiber... pretty good in my opinion. They have other flavors of course, but I only like the chocolate.
 
IIIIII DDDOOONNNNNTTTT FFFFEEEEEEELLLLLLL GGGOOOOOOOODDDD!!!!! :( :( :(
EVERYTIME I EAT... CRAMPING, SHOOTING PAINS... ahhh :(
I FEEL LIKE POO :( it's really intense pain... :(
 

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