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Hi all

I've been quietly freaking out and watching everyone's posts. Am working from home today - I needed to be close to a comfortable bathroom... And had to get more blood tests done (bruising easily) and pick up some disgusting powdered food my GP prescribed, as well as more codeine.

Next GI appt on Monday. From there, probably colonoscopy and endoscopy to check out why when I eat it feels like food is stuck in my throat. Got so frustrated on Sunday - went to a movie with my husband and drank rather a lot of red wine... Followed by a whopper from BK. Yup. Man. A bad idea after eating only my miso/udon soup for weeks :( I don't even like BK. self-sabotage ahoy. It's been an unpleasant couple of days.

Just have to get through the week.

Love and thoughts to you all.:ghug:
xLT
 
@ StaceyC96 - im so glad you have some answer, but sorry to hear it is Crohn's :( but at least you can have some treatment now to help with your symptoms :hug:

@ cat - that makes sense to wait and see the rheumy first - and i agree with chickadee, flexi sigs are good to treat something quickly if they think it is lower colon/rectum. but just like mine - they found the bleed (fixed it) then i still had to have a colonoscopy to see if there more issues further around lol!

@ littlemissh - good luck with the methotrexate!

@ lenatilde - sorry to hear you have had a rough few days :( good luck with your GI appointment next week. have you had colonoscopy and gastroscopy before?

as for me, i saw a different GP this morning. and the appointment went really well. He has booked me in for a double appointment next tuesday, and he is going to look at my full history beforehand.
He said the inside of my nose is inflamed (i have no blockage, runny nose, sneezing... just very very sore) and he doesnt want to "faff about" by prescribing things.. wants to have a good think and let me know next week.

i just cried and said - im fed up. im fed up of spending the last 2 and a half years of having one thing after another go wrong. i am not "acutely" ill.. in other words - i am coping and not in a desperate need of medical attention. so i feel guilty that i am always going to the doctors and they dont find anything wrong - like im wasting their time.

it isnt the doctor's fault - i dont have classic signs of anything. my bloods dont show anything. so i cant expect doctors to know immediately what is wrong. and they have always tested me for things and investigated it. but yet there is something going on, in my body - something inflammatory. but who knows what lol!?
The GP said it makes sense for me to feel this way. and he said it would be nice if i presented illnesses normally. ie: when i had appendicitis, it took 2 months before they diagnosed and removed it. because i was walking around, pain wasnt classic. and i was still eating! so i cant blame doctors for the reason it is taking a long time.

i am just fed up with my silly body playing silly games on me! haha!
rant over. just glad he listened to me.. and i need to accept this is how i am.. and not feel guilty for seeing doctors so frequently.
 
@ bozzylozzy - never before have I had a colonoscopy or gastroscopy... Recently had a flexi sigmoidoscopy, which was bad enough. Thank you for your kind thoughts :hug:

I hear you about the frustration! I had my appendix out almost 13 years ago - there was apparently nothing wrong with it, but they took it out anyway. And no-one ever figured out why I was in so much pain... As soon as I was false diagnosed with rheumatoid arthritis, which got changed 6 years-ish later to fibromyalgia, every complaint I make tends to be "oh yeah... That's yer fibro..." - until my current GP. it sounds like you have a good'un there with your GP :) keep on talking to him as honestly as you have been!

home again, working... My bathroom is really rather cold :ywow:

xLT
 
Hi everyone
As you all know some of my story I have just got a letter from my GI saying I have elevated levels of calprotectin does this mean I have a diagnosis!? Does this mean its IBD not IBS!!??
 
Hi Gabi, my understanding is that high fecal calprotectin means there's some inflammation going on in your digestive tract. It doesn't necessarily mean you have IBD, and most doctors won't diagnose based purely on calprotectin results. But, it is probable that you have IBD since there aren't many things that can cause a raised calprotectin, and at the very least it should cause your doctors to narrow their focus when looking at possible diagnoses. Have you talked to your doctor yet about this? Hopefully they can give you more information and let you know what the next step is in your journey.

Lenatilde, that's interesting your diagnosis changed from RA to fibro, that's quite a jump! As I'm sure you know, IBD and arthritis often go hand in hand, and arthritis is sometimes misdiagnosed as fibro, so it seems odd to me that they changed the diagnosis to fibro. Once you get your digestive issues figured out, I would have your doctors take another look at the fibro/arthritis. How were you diagnosed with RA in the first place - did you have a positive ANA on a blood test? Did they see any signs of arthritis on an x-ray?

Bozzy, poor thing, I'm glad you found a good GP. But I can relate to so much of what you wrote. As you probably already know, I may or may not be in a flare right now myself. I really have no idea. One day my guts are awful and I'm nauseous and dizzy and passing blood, and then a couple days later I'm fine. But I'm not a bleeder and this doesn't feel like a typical flare, but obviously things aren't normal either. My hair started falling out again and my lips are red and peeling, lots of little weird stuff like that which isn't normal for me either (my hair only fell out when I was on Entocort, never because of a flare by itself). And my GI did just what your GP did - he said I should wait 2 weeks and then call him back. Hmph. He also said not to lift anything heavy for these 2 weeks - well, you know me and how I love to work out. I haven't lifted weights since Friday and I'm so anxious to get back to the gym. There's no way I'll make it 2 weeks, my muscles are begging to be put to use. I think I'm going to try to last 1 week and will go back to the gym on Friday - if that somehow causes me to bleed again then at least I'll have the weekend to try to recover. Anyway, I'm rambling again. But yeah, my point was, I totally know the feeling and am going through something similar right now. It's confusing and it sucks! Big hugs to you!

Getting anxious for my rheumy appointment too. They sent me some paperwork yesterday to fill out for my appointment, but it's seriously a lot of work! There are like 6 pages, front and back, tiny font, a million questions to answer! It's like being in school again and having a ton of homework! I also just re-applied for FMLA (I'm not taking any chances in case this is a flare and/or gets worse) so that was another 6 pages of paperwork to fill out. I swear, the sicker I get, the more paperwork there is to do, and the less I feel like doing paperwork. :p
 
@ cat - it was ANA based primarily, and RF on bloods. On that and my history they diagnosed the RA, chucked me in prednisone (which did nothing), left me for a lifetime of pred and pain - and eventually I found a rheumy who was convinced it was fibro rather than RA. since then I've had another rheumy who has backed that diagnosis, and the hypermobility. No x-rays were done to prove initial RA diagnoses. It was rather a palaver, in truth.

Wish I could fill your paperwork in for you - I love paperwork! :)

Gave in and am not even working from home today... Accepted leave without pay and the fact I'm a bit useless. Big pain, to the touch too, in my upper right under my ribs, left under my ribs, and right of belly button. Nauseas, which is ramping up and unusual. Diarrhea back and bad - bright yellow and undigested food (can see my meager lunch from yesterday - ginger root and all!). Codeine, clonazepam, sleeping if I can. Emergency department if I get much worse. Frustration and tears plus plus.

Thanks for listening, lovelies.

Y'all keep being beautiful and strong. Cat - super good luck with the rheumy :hug:
xLT
 
Lenatilde, that's interesting that pred did nothing for your fibro/arthritis. Were you on pred before the bowel issues began? Pred does wonderful things for my guts, I love the stuff! It's like magic, it makes my symptoms disappear and it makes me feel like a million bucks. I'm the opposite though, I haven't taken pred since before I developed arthritis, so I don't know if it'd help my joints or not.

It sounds like you're in an awful flare, and I'm glad you're going to head to the emergency room if it gets worse. Yellow d usually means inflammation - I get yellow d in a bad flare too (haven't had any yet myself in this maybe-flare, knock on wood). Undigested food can be problematic as it can cause a blockage - if you get any symptoms like projectile vomiting, or pain so bad you can't straighten your legs, those are signs of a blockage (so I've heard, haven't had a blockage myself either - again, knock on wood!) - so if anything like that happens, definitely get to the emergency room right away. Hang in there and I hope you feel better really soon! Please keep us posted, worried about you. Sending you a big hug from the other side of the world.
 
I love prednisolone too! Well.. I love the fact it works. . I dont love the side effects haha.
It worked great on my knees.. as did the steroid injection and thats how they diagnosed inflammatory arthritis.

How are you all today? I still feel bleurgh but im going to a hotel spa with my friends tomorrow in london. So im looking forward to that :)
 
So all my scans and tests have come back normal so far. I had a HIDA scan today so will have to wait for those.
I'm still in pain, still can't eat the same things, still having diarrhea or not going at all but I have no bleeding.
I am so frustrated and peed off, ended up breaking down in tears to my hubby before because I'm so fed up.
I know I'm not the only one but its just the tests felt useless even though I know they aren't and people around me have all a sudden turned into Doctors or food police and making comments of "that's weird" -___-

I'm just thinking if they don't find anything in my gallbladder and nothing in the CT scan which my Dr said she will do then what? How are you all coping? Do any of you sometime feel like crying or screaming?

Just tried milk again and nope that hurts but I just wanted to see if I was right.

On a side note I went to the gyno just because I thought I should and turns out I have an abnormal thyroid so have to have that checked out on Monday, I don't think it's related.


X
 
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Bozzy, a spa day sounds amazing, have fun! I hope you are feeling okay to enjoy it and that it's really relaxing and wonderful.

Bluebird, I don't know much about thyroid stuff, but when I first got sick, they did some bloodwork to check my thyroid, as they said that sometimes an out-of-whack thyroid can cause diarrhea and other gastro-type symptoms. My thyroid checked out fine so they ruled that out as the cause for me. I'm not sure exactly what kind of symptoms or what severity of symptoms can be caused by an abnormal thyroid - but it is possible it's causing at least some of your symptoms. Good luck, hopefully they can treat it and it'll get you at least some relief!

As for how to cope with normal test result after normal test result, oh hun, I have been there and it sucks. Pretty much all my test results are normal, on paper I'm the picture of health. :p At one point I pretty much snapped, I couldn't deal with it anymore. I was in a terrible flare, felt just miserable, and couldn't get into my GI or my GP that day, so I saw a different GP in the same clinic. This doctor was horrible - he walked into the exam room, glanced at my chart for all of 2 seconds, and then pronounced "You have IBS. And you look depressed, would you like some Zoloft?" His flippant know-it-all attitude and obvious quackery (who diagnoses someone with depression based on how they look???) just pissed me off so hard. I told him, I think I have IBD, it's not IBS, I want to try prednisone, end of story. I put my foot down and basically demanded pred. He hemmed and hawed and then said, "Well, I think that's a reasonable request to do a trial of prednisone. But first I want you to try these IBS medications. I think these will work for you, and I don't think you have IBD so I don't think the pred will do anything, but I'm willing to let you try it and see for yourself that it does nothing." He was so smug, I wanted to punch him! But he gave me pred and that was the key. I tried the IBS meds like he asked, and they of course did nothing. Then I tried pred, and it was magical. My symptoms went away in 24 hours and I felt so incredible, like superwoman! :p

So yeah, I never saw that doctor again, and would never want to as he was a total jerk, but he was the turning point in my illness. I *still* haven't had anything definitive show up on a test result, but because pred worked so great for me, suddenly my GI had something to go on and he could narrow his focus. A few more normal test results later and he decided to put me on treatment long-term, to get me into remission. I was on Entocort (a corticosteroid similar to pred) for 7 months and it worked - I was in remission for just over 2 years thanks to it. :) I might be flaring now, not sure - I don't feel terrible, but I have been passing blood lately so who knows. At any rate, I'm rambling on again, but it took me basically demanding medication to get somewhere, because the test results were getting me nowhere. Prednisone is an interesting medication because it only works on inflammatory conditions (so it works on IBD, but not IBS - it works on other inflammatory illnesses too like Lupus, Behcet's, Addison's, etc). So knowing that I had such a great reaction to pred, at least we could then narrow down the list of potential suspects and have some idea of how to treat me. We then ruled out Lupus & Addison's, and I don't fit the symptoms of Behcet's, we ruled out RA, etc. So now I basically have a pseudo-diagnosis of IBD based primarily on my positive response to pred and the fact that most everything else has been ruled out.

Those feelings of frustration you mentioned, though, I still have them all the time too. Like lately, I have no idea what's going on. Sometimes my stomach is really riled up and I'm passing blood, my hair sometimes falls out and my lips are red and peeling - but for the most part I feel okay, so is this a flare? I've never had a flare with symptoms like this, so is this something new? It just never seems to really end. I had a nice 2 year break and now right back into the world of medical tests and endless questions that nobody seems to be able to answer. It's exhausting, it's frustrating, it's endless. Just gotta keep fighting though, that's all we can do! So hang in there, even if you don't always feel strong - you are! Big hugs.
 
Bluebird-- I'm so sorry you're going through the "tests are fine but you're not" trauma. I am in the same boat, and I know it's awful. :( As far as thyroid, though, thyroid problems can affect the intestines. Hyperthyroidism can cause diarrhea, and hypothryoidism can cause constipation. I have had both hyper and hypo. Even treated for thyroid problems, I still have separate intestinal issues, but the diarrhea and weight loss were worse when I had hyperthyroidism.

Cat-a-tonic-- I've asked for pred too and been refused. Maybe I need to be more demanding?
 
I have read thyroid stuff can affect your tummy but would it effect what food I ate? I cant eat fat,nuts,randomly popcorn :/, dairy and i cant drink Apple juice,caffine,soda and alcohol consumtion is limited.
I just don't think it's that and you would of thought my GI would of recommended me getting that done in the first place however as long as i can get better then i dont mind. I swear if it turns out its a thyroid issue I will hi5 my GI in the face with a colonoscopy pipe lol
 
Bluebird-- It's probably not JUST thyroid issues, but the thyroid issues might be making your intestinal problems worse. When my hyperthyroidism improved, I still had (and have) tons of GI issues, but I stopped losing crazy amounts of weight. It's unlikely that fixing your thyroid problems will cure your GI symptoms (though that would be awesome if it happens), but maybe it will help a little bit.
 
Yeah I know what your saying, funny enough before my tummy problem or whatever problems started I always struggled to lose weight.
I have been constantly tired for month and months and also I suffer from depression so that would probably explain that for sure.

I'm just so tired when friends and fam keep making comments like "how weird" at least you all understand me, my mum actually compared her finding a new apartment to my pain and health saying she gets how stressed I am -___-

If only I could wish all our issues away :)
I know for now I have to put up with it and having people like you guys to come to makes it easier to get back up and dust myself off. Xxx
 
Man, I'm nearly off prednisolone (3mg yay) after almost a year and I now realise how much it was affecting my energy and mood. My fatigue has lifted (a LOT) and my mood is so much better. I actually feel happy. So weird. I thought it would be the other way about!! Shame my weights not coming off though :(
 
lsgs, I had gained 25ish lbs when I was on Entocort and it all came back as fat in my midsection! Eek! I've been exercising regularly since then and have turned most of the flab into muscle - my weight is about the same but I'm definitely more toned. But, I still have some of that stubborn Entocort flab around my tummy area. It's really tough to lose the steroid flab. Possible, but really difficult! It sounds like you're doing better though and that's great. :) Try not to worry too much about the weight - if you're able to, maybe try to do some gentle exercise, don't push yourself too hard at first of course. I'm really liking yoga lately, I can do it at home where nobody can see me and I'm near my bathroom, and it's not too strenuous but you do definitely feel it in your muscles the next day.

Bluebird, have you tried showing The Spoon Theory to your friends & family? If they still don't "get it", well you know we're always here for you! Most of my friends & family don't really get it either. My hubby absolutely did not get it at first, then he got kidney stones and got a little taste of what it's like to be in pain and sick all the time (he vomited a lot when he had kidney stones). Now he understands much better. I don't think my mom or brother get it at all though. But my dad read the Spoon Theory and he almost cried, which surprised me, so I do think it's worthwhile to ask your loved ones to read it. Here's the link:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
 
I have been suffering from severe upper/lower abdominal pain for 15+ years. I have had numerous tests multiple times - endoscopies, colonoscopies, barium swallows, MRIs, ultrasounds, etc... I've been told i have IBS, GERD, and Gastritis. Half the time I'm sure people were convinced i was crazy! After all, how could I have so much pain when all the tests seem so 'normal'?

Recently, the pain (upper pain above the stomach) linked to lower abdominal pain which occurs at the same time - usually during digestion - immediately after eating & the entire time through until exit (lasts 24+ hours on and off) began to cause severe weight loss (30 lbs in 6 months). I also have an underactive thyroid, so that is huge for me. Also, I didn't have 30 lbs to lose.

I'm sure i am leaving a lot out, but my new Gastroentologist just discovered that I have :cool: 'Celiac Artery Compression Syndrome' :cool: - the Celiac Artery feeds the gut with blood supply etc, - crucial to a healthy/working gut. I have not yet seen a vascular surgeon, so I do not know the extent of damage or compression, but I wanted to share this diagnosis with everyone in this forum. It took almost 20 years for someone to find this rare disorder for me and if I can help even 1 person chop a few years off of relentless testing and severe suffering by posting this that would be awesome. :cheerleader:

I have read a lot of posts and symptoms with questions very similar to my own throughout this entire forum... Hoping this will help someone! Please let me know if u have any questions.

I'm not a Doctor or an Expert, just a fellow sufferer... :poo:

~peace~
 
Cat-a-Tonic said:
lsgs, I had gained 25ish lbs when I was on Entocort and it all came back as fat in my midsection! Eek! I've been exercising regularly since then and have turned most of the flab into muscle - my weight is about the same but I'm definitely more toned. But, I still have some of that stubborn Entocort flab around my tummy area. It's really tough to lose the steroid flab. Possible, but really difficult! It sounds like you're doing better though and that's great. :) Try not to worry too much about the weight - if you're able to, maybe try to do some gentle exercise, don't push yourself too hard at first of course. I'm really liking yoga lately, I can do it at home where nobody can see me and I'm near my bathroom, and it's not too strenuous but you do definitely feel it in your muscles the next day.

Bluebird, have you tried showing The Spoon Theory to your friends & family? If they still don't "get it", well you know we're always here for you! Most of my friends & family don't really get it either. My hubby absolutely did not get it at first, then he got kidney stones and got a little taste of what it's like to be in pain and sick all the time (he vomited a lot when he had kidney stones). Now he understands much better. I don't think my mom or brother get it at all though. But my dad read the Spoon Theory and he almost cried, which surprised me, so I do think it's worthwhile to ask your loved ones to read it. Here's the link:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Click to expand...


No I haven't but I think I will try that, such a good idea.
Thank you gorgeous!! *massive hugs* it's like having another family here :)
 
Jayed75 said:
I have been suffering from severe upper/lower abdominal pain for 15+ years. I have had numerous tests multiple times - endoscopies, colonoscopies, barium swallows, MRIs, ultrasounds, etc... I've been told i have IBS, GERD, and Gastritis. Half the time I'm sure people were convinced i was crazy! After all, how could I have so much pain when all the tests seem so 'normal'?

Recently, the pain (upper pain above the stomach) linked to lower abdominal pain which occurs at the same time - usually during digestion - immediately after eating & the entire time through until exit (lasts 24+ hours on and off) began to cause severe weight loss (30 lbs in 6 months). I also have an underactive thyroid, so that is huge for me. Also, I didn't have 30 lbs to lose.

I'm sure i am leaving a lot out, but my new Gastroentologist just discovered that I have :cool: 'Celiac Artery Compression Syndrome' :cool: - the Celiac Artery feeds the gut with blood supply etc, - crucial to a healthy/working gut. I have not yet seen a vascular surgeon, so I do not know the extent of damage or compression, but I wanted to share this diagnosis with everyone in this forum. It took almost 20 years for someone to find this rare disorder for me and if I can help even 1 person chop a few years off of relentless testing and severe suffering by posting this that would be awesome. :cheerleader:

I have read a lot of posts and symptoms with questions very similar to my own throughout this entire forum... Hoping this will help someone! Please let me know if u have any questions.

I'm not a Doctor or an Expert, just a fellow sufferer... :poo:

~peace~
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What a fascinating story! What were your symptoms and how were you diagnosed?
 
Bluebird, big hugs hun. We are like a family here, if you could choose your family then I would definitely choose my forum family! :)

Hi Jayed75, welcome to the forum. I've never heard of that, can I ask how you got diagnosed with it? Can they see it on a scan? What's the treatment for it, are you getting some relief now that you're diagnosed?
 
Jayed75-- Thanks for sharing about your diagnosis. I think I saw an episode of Mystery Diagnosis that featued 'Celiac Artery Compression Syndrome. The treatment is surgical, right?
 
Celiac Artery Compression Syndrome

Cat-a-Tonic said:
Bluebird, big hugs hun. We are like a family here, if you could choose your family then I would definitely choose my forum family! :)

Hi Jayed75, welcome to the forum. I've never heard of that, can I ask how you got diagnosed with it? Can they see it on a scan? What's the treatment for it, are you getting some relief now that you're diagnosed?
Click to expand...

And

lsgs said:
What a fascinating story! What were your symptoms and how were you diagnosed?
Click to expand...


Hi, Thank you for the warm welcome! :rosette2:

I will add more later about symptoms etc, but I wanted to respond. :)

The diagnosis of Celiac Artery Compression Syndrome is a diagnosis of exclusion due to the 'experts' not agreeing on this or that - so basically I had to have the endoscopy (normal except Gastritis) then the colonoscopy (normal), then a special ultrasound - the ultrasound (plus my pain symptoms and weight loss) is what confirmed the disorder. So, they can see this syndrome using an Ultrasound - they use the visual aide plus measure inspiration and expiration flow rates of the Celiac Artery ... something along those lines... :thumright:

Ultimately, if left only to blood work (which mine checks normal in most areas routinly checked) and the basic endoscopy/colonoscopy procedures, on paper, I appear a picture of health.

It's hard to briefly describe my symptoms because i am, at the same time, seeing an Endocrinologist and haven't yet had a 1st appointment (hypothyroidism). (Possible: Addison's Disease.)

But aside from that, my symptoms would be coal-like burning above the stomach (intense sweat dripping, blood pressure/pulse raising pain) coupled with a similar pain throughout my small intestine - either directly before and/or during the 'center chest' pain above my stomach. Usually, I noticed some relief after a successful bowel movement. :poo:

But the pains do not completely disappear - only become less intense and bearable. (There are certain bras/shirts i cannot ware because any mid-chest pressure will spike the intensity during these lower-intense times.)

Sometimes these intense episodes happen after eating, but sometimes they happen after stressful circumstances (i.e. standing for over 30 mins, being up too late, waking up in morning, working, digesting, etc.). However, it does always revolve around eating in some way whether same day or next morning/afternoon... And I am always dizzy with low blood pressure throughout the entire 'episode.' With a more intense dizziness before a successful bowel movement.

I also have Severe fatigue, and either diarrhea or constipation - and severe swelling inside the guts and on the outside - my fingers, veins, calves - calls for immediate lay down. (I wouldn't wait to have all these symptoms to suggest checking for this syndrome with Dr. as I'm not sure if some are exclusive to me??)

The treatment is, if I choose, surgery. I have not yet spoken to a vascular surgeon to discuss treatment because I am so early in diagnosis, but I will most likely choose laparoscopic surgery if I can. The success rate and relief rate seem high, so I am optimistic; however bitter-sweet it feels...

Right now, the only relief of symptoms i can get is from not eating solids and only drinking non-dairy, non-soy, non-glutton supplement shakes with non-dairy, non-soy, non-glutton Almond Milk 3 to 4 times daily.

My emotions are greatly relieved to have a diagnosis - after so many years, i began to question myself! :dusty:

Thank you for listening :)

~peace~
 
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Chickadee said:
Jayed75-- Thanks for sharing about your diagnosis. I think I saw an episode of Mystery Diagnosis that featued 'Celiac Artery Compression Syndrome. The treatment is surgical, right?
Click to expand...

Hi Chickadee,

Yes, the treatment as I understand is surgical and seems to have a high success rate. I have not yet spoken with or even committed to a vascular surgeon, but that is my next step. I should have more info after my next GI appointment this Tuesday. I can keep u updated if u would like? :thumleft:

Thank u for caring :)

~peace~
 
Aw Jayed I'm sorry you are in pain luv, keep us updated as we all care and their are some very helpful people on this forum! I always feel bad because I don't know how to help because I've only been suffering a short time compared to these lovely people but I guess as long as we are all here for each other then that's all that matters :)

Big hugs Hun x
 
Cat-a-Tonic said:
Thank you, LittleMissH. I do trust your opinion so I just emailed my GI. Like I said in my earlier post, I'm not sure if he's even around, I think he's going to be gone for about a month. But I just went to the gym and had a pretty awful workout. Anytime I tried to do anything involving my abdominal muscles (even the triceps machine), my body sent me a very strong signal saying I should stop! I remember when I first hit remission, my body was practically screaming at me to eat and to exercise, so I did both, and I felt great. Today in the gym, my body was practically screaming at me to rest. I hate this. So I'll let you guys know if my GI responds. If he's not there, one of his nurses usually responds to his messages.

I did have one more thought while I was in the gym - I have severe GERD and I have to take anywhere between 6 and 10 Tums (antacids) whenever I work out. I also take 300 mg Ranitidine before a workout, and another 300 mg Ranitidine before bed. And on top of that, I take 40 mg Nexium first thing in the morning. That amount is necessary to keep my symptoms at bay and so that I can exercise. And I exercise almost every day. But maybe all those reflux meds are causing me to bleed? I did a quick google search of "Tums and rectal bleeding" and came up with a few hits. So maybe that's the culprit? If so, though, that's a problem. I cannot work out without taking a bunch of antacids - I will literally puke within a matter of minutes if I go into the gym without Tums in my system. And if I can't work out, I am going to get really depressed. I can't not exercise. Ugh, no matter what is causing this, I don't like it.

Wow, that was fast! As I was typing this, I got a voicemail - apparently my GI's clinic already saw my email and are calling me for more info. I'm going to return their call in a little bit - once I pull my emotions together. Crap like this makes me cry so easily, it's ridiculous.

Edited to add: Pulled myself together & called my GI's office, the nurse wasn't available when I called so I'm waiting for a call back. It's nearly 4 PM on a Friday so I'm not sure if I'll even get a call back today or if I'll have to wait till Monday.
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I'm pretty sure you aren't supposed to take any other gerd meds wthin four-five hours of each other. Even though they are good at stopping gerd, they also affect how we digest our food. If there is no acid at all, you can't digest your food or break it down. I too have gerd and I think it is more an issue with the flap not closing that goes to the esophagus. Sounds like you have that also. I would really try to remedy taking so many of those and try some good probiotics. Just my thoughts. Hope you feel better soon Cat!:thumleft:
 
Crossroads, the only GERD meds I take at the same time are Zantac & Tums just before I work out. I've experimented a bunch, and that's the combination I need in order to get through a workout without refluxing horribly. If I take anything different/less than that, then I get too nauseous to finish my exercises. My doctor knows this and he's okay with it, he feels like working out is doing me a lot of good. I'm still able to break down my food, so I've on a good balance of meds.

I do have a hiatal hernia, it was found on endoscopy about 6 months ago. However, it's "small and sliding" according to my doctor, so it shouldn't be causing such severe symptoms. My GI is unsure why my GERD is so severe when my hiatal hernia isn't all that bad.

I can't take probiotics, they cause me more harm than good. They worsen my GERD and can cause me to pass blood too.
 
BluebirdInLove said:
Aw Jayed I'm sorry you are in pain luv, keep us updated as we all care and their are some very helpful people on this forum! I always feel bad because I don't know how to help because I've only been suffering a short time compared to these lovely people but I guess as long as we are all here for each other then that's all that matters :)

Big hugs Hun x
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Thank you Blurbird - hugs back :)

:ghug:
 
Cat-a-Tonic said:
Crossroads, the only GERD meds I take at the same time are Zantac & Tums just before I work out. I've experimented a bunch, and that's the combination I need in order to get through a workout without refluxing horribly. If I take anything different/less than that, then I get too nauseous to finish my exercises. My doctor knows this and he's okay with it, he feels like working out is doing me a lot of good. I'm still able to break down my food, so I've on a good balance of meds.

I do have a hiatal hernia, it was found on endoscopy about 6 months ago. However, it's "small and sliding" according to my doctor, so it shouldn't be causing such severe symptoms. My GI is unsure why my GERD is so severe when my hiatal hernia isn't all that bad.

I can't take probiotics, they cause me more harm than good. They worsen my GERD and can cause me to pass blood too.
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Hi Cat,

I, too, have the diagnosis of GERD and was told that that was my 'main' ailment for years - when having a flare up I would need to take 2 tums with a piece of bread and lay down to completely relax my entire system. Sometimes, I would take an NSAID as well like: indomethacin to reduce internal swelling - although these too can agitate our stomachs. Once the pain stopped (15-30mins depending), i could try to continue what I was doing previous, but heavy exercise i probably couldn't do :yfrown: .

Have you tried less weight, but more reps? Or less time at once?

Stay strong - :thumleft:

:ghug:
 
Cat-a-Tonic said:
Crossroads, the only GERD meds I take at the same time are Zantac & Tums just before I work out. I've experimented a bunch, and that's the combination I need in order to get through a workout without refluxing horribly. If I take anything different/less than that, then I get too nauseous to finish my exercises. My doctor knows this and he's okay with it, he feels like working out is doing me a lot of good. I'm still able to break down my food, so I've on a good balance of meds.

I do have a hiatal hernia, it was found on endoscopy about 6 months ago. However, it's "small and sliding" according to my doctor, so it shouldn't be causing such severe symptoms. My GI is unsure why my GERD is so severe when my hiatal hernia isn't all that bad.

I can't take probiotics, they cause me more harm than good. They worsen my GERD and can cause me to pass blood too.
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Oh wow! I guess then that whatever works best for you, glad your Dr. approves. I should try the Tums as well, because my Gerd never goes away completely, even on very strong Protonics. My GI thinks my flap doesn't close all the way. Maybe because no hiatal hernia was seen on scopes. It's awful, isn't it having Gerd?
 
I'm the same as you 723crossroads, nothing seems to control my reflux/regurgitation.

They do say with the autoimmune disease I have it makes the pyloric sphincter weak so it allows food back into the oesophagus though. And that's exactly what it feels like. No burning, just food coming back into my throat. So gross.
 
lsgs, that's mainly what I experience too - it doesn't usually feel like acid coming up, it feels like food/water/"stuff" coming up. I rarely get heartburn. When acid does come up, it's like burning dragon fire - fortunately that doesn't happen often. I get a lot of nausea with my GERD though too which is the sucky part.

Crossroads, my GERD never goes away completely either. With all the meds I'm on now, it's fairly well controlled though. I'm not waking up in the night having awful reflux attacks anymore, and I can get through a workout without puking. The symptoms are always there, but they're much easier to tolerate thanks to Nexium, Zantac, and Tums.

Jayed, only 2 Tums? I took 9 Tums before my workout today plus a 300 mg Zantac. :p I have to have a completely empty stomach too, no food for at least 2 hours before working out, and only water. I once tried drinking Gatorade before a workout, and I had to stop after about 2 mins. Got super nauseous and just could not continue! Yes, I could do more reps/lighter weights, that's what I was doing when I first started lifting weights. There's nothing like lifting a big, heavy weight until you can't possibly do one more rep though. :) I like to push my muscles to the point of failure. I feel so strong, like a normal healthy person when I'm doing that. My gym time is the only time I can fool myself into feeling healthy and I treasure that and try to make the most of it each time. So yeah, I could ease up, but I feel so much better when I don't if that makes sense. :p
 
Cat,

Lol! :lol2: Yes, only 2 tums (at one time) the big ones though "Tums Smoothies" - mainly because I can't stuff more down my throat without gagging. I, like you and many others here, have had to take so many throughout the years that I just can't stand that chalky, nasty taste. You do make an excellent point, however, when the stomach (GERD) is acting up, this may be something I have to do repeatedly throughout the day... :yfaint: (I do have to point out that at times, it's hard to say whether its the GERD or the Celiac Artery that is the culprit of the day.) :hallo3:

I do know what u mean by excersing with weights - i used to workout years ago. Sadly I have not been able to exert myself like that in years, but perhaps after surgery i can slowly start again! :thumleft:

I admire your strength!!

:rosette2:
 
Well, technically I only have 2 Tums at a time too (I also do the Tums smoothies, they're less chalky than the regular Tums). Before a workout, I've pretty much got it down to a science. :p I have my Zantac before I get my things together. 2 Tums as I'm getting ready to go. 2 more as I head out the door. 2 more as I'm on the road heading for the highway to the gym. 2 more as I exit the highway, and 1 for good luck as I'm in the changing room at the gym. That usually works out quite well.

Hah, it's not so much strength as it is stubbornness. ;) I might be flaring, and my doctor told me not to lift anything heavy for 2 weeks. I lasted one week and went right back to the gym. :p I'm feeling pretty good though - I am taking it easy on my abdominal muscles as much as I can.

If you're interested in working out, we have a fitness & exercise support group here. I would say, start very slowly and see what you can and cannot do. Maybe short walks or gentle yoga to start with, and if that goes well then you can gradually increase the amount of time & intensity. And of course don't push it if something hurts. I personally can't jog - both my hips now have arthritis (I'm only 33, so that sucks). And I seem to have an increase in symptoms when I ride my bike, which is frustrating. But I can lift weights, and do yoga, and walk my dog. So it's okay, I can still do some exercise.

Speaking of my dog, she's been passing blood in her poo all weekend! Poor thing, I know just how she feels. I hope she just has an infection or whatever and not IBD.
 
Thanks for the tips you all! I am going to go for the tums next time as soon as I get some. I need something for the breakthrough burning.
 
Wow! Lots of posts!.. the only experience I have with heartburn was when I was pregnant.. I hated that so much. So I do not envy you guys suffering with it all the time!

My spa weekend was lovely :) but im getting really nervous for the surgery this friday :( eek!
How are u all doing? Xx
 
@ jayed75 - that's so interesting about the celiac artery compression syndrome. Ill have a proper read about it later on after work.. as I didnt understand it at first glance. When will you find out if you are having the surgery?
 
Bozzy I always lose track of the posts in this thread, it moves so quickly.

I've put my turbo trainer in to get fixed so I can start trying to shift some weight. I haven't gained for about two months and I can eat anything I like again. So I should be able to start losing some. Hopefully get a bit fitter in the process if my turbo can be fixed! Can't wait to get those cyclists thighs and calves again! :D
 
Just a update that I have a partial diagnosis, my Dr has said that its going to either be Crohn's disease or Celiac Disease.
Can you believe that my mother turned around after I told her and said "oh so nothing life threatening then" -___-

My thyroid he said he isn't too worried about because my blood test was fine the month before but just to be safe than sorry he's ordered me to have an ultrasound but he doesn't think they are related and thinks its a separate issue.


So not a diognosis but a partial which is better than not knowing at all, least its narrowing it down xxx
 
lsgs, what's a turbo trainer? Is that one of those things you put on your bicycle so that you can ride indoors, it basically turns it into a stationary bike? Have fun with it! I know you've been wanting to ride again, and I hope you can get outside for a proper ride once you feel confident enough to.

Bozzy, I've heard that from friends of mine who were pregnant, my friend from childhood said she had awful heartburn all through her first pregnancy, and my sister-in-law (who is pregnant with her 5th kid!) has complained about heartburn a lot too. I don't have kids and have never been pregnant, but the more I hear about it, the less it sounds like something I want to go through. :p I look at my sis-in-law and her 3 monsters and her one good kid (guess which one is my favorite, ha ha) and she's got another monster on the way, and I'm just SO glad that isn't me! I think I would run away and join the circus if I had to deal with that many kids all the time! Although I would adopt her oldest in a heartbeat - my oldest niece likes to read, she's quiet and thoughtful and for some reason the kid actually likes hanging around with dorky old Auntie Cat. :p I usually don't like kids but my niece is pretty awesome. This is probably another reason I shouldn't have kids - I totally play favorites, and I resent my parents for playing favorites with my brother and I (he was the favorite). So if I ever do have kids (not likely), I'm totally going to stop at one so that they have no choice but to be my favorite! :p

Wow, that was a ramble. What was I talking about? Oh right, heartburn. Ha ha. Yeah, I fortunately get it very rarely. I reflux all the time but rarely feel actual heartburn type pain. Although if I eat fried food - fried fish being the biggest trigger I've found - I will have horrid heartburn for hours and hours. I remember hubby and I went to a fish fry awhile back, and then we went to see a movie afterwards. I barely remember anything about the movie because I was so uncomfortable throughout the whole thing. I had to sleep sitting upright that night too, which is always so uncomfortable and I have such a hard time falling asleep in that position. Not fun, so no more fried fish for me.
 
Bluebird, that's good news! What's your doctor basing this on, purely by symptoms or has a test come back with a positive result? Have you been tested for celiac yet? The blood test is notoriously unreliable (I've heard that you may as well flip a coin). The "gold standard" for testing for celiac is to do an upper endoscopy with biopsies. Oh, and you have to have been eating gluten regularly for at least a couple of weeks before they take the biopsies. If you don't have gluten in your system, your body stops the reaction and everything looks normal, even if celiac is actually present. So if you're gluten-free at the time of the test, everything will look fine even if it's not, if that makes sense.

I'm sorry your mother sounds very unsupportive. Mine is too if it's an consolation. On the subject of celiac, I've had 2 upper endoscopies w/ biopsy and also I've had the blood test for celiac. All came back negative, I've been told by my doctor that I 100% do not have celiac. But my mom for some inexplicable reason thinks I have celiac, and that if I just go gluten-free then I'll magically have perfect health forever. She refuses to listen to reason on this subject, and she's self-diagnosed herself with celiac and she actually tells people she's been diagnosed with it (she's never seen a doctor about it and didn't have any stomach or dietary issues to begin with). I don't know if she's lost her mind or what. But yeah, instead of her being supportive and listening to me, I just keep getting the same gluten lecture over and over. My dad is kind of an idiot, but he's actually tried to be supportive which surprised me. He'll actually ask about my health and ask what my doctor said and so on. My mom never asks, always just lectures. I'm so tired of it. I'm sorry you have one of "those" mothers too. :(
 
Cat-a-Tonic said:
Bluebird, that's good news! What's your doctor basing this on, purely by symptoms or has a test come back with a positive result? Have you been tested for celiac yet? The blood test is notoriously unreliable (I've heard that you may as well flip a coin). The "gold standard" for testing for celiac is to do an upper endoscopy with biopsies. Oh, and you have to have been eating gluten regularly for at least a couple of weeks before they take the biopsies. If you don't have gluten in your system, your body stops the reaction and everything looks normal, even if celiac is actually present. So if you're gluten-free at the time of the test, everything will look fine even if it's not, if that makes sense.

I'm sorry your mother sounds very unsupportive. Mine is too if it's an consolation. On the subject of celiac, I've had 2 upper endoscopies w/ biopsy and also I've had the blood test for celiac. All came back negative, I've been told by my doctor that I 100% do not have celiac. But my mom for some inexplicable reason thinks I have celiac, and that if I just go gluten-free then I'll magically have perfect health forever. She refuses to listen to reason on this subject, and she's self-diagnosed herself with celiac and she actually tells people she's been diagnosed with it (she's never seen a doctor about it and didn't have any stomach or dietary issues to begin with). I don't know if she's lost her mind or what. But yeah, instead of her being supportive and listening to me, I just keep getting the same gluten lecture over and over. My dad is kind of an idiot, but he's actually tried to be supportive which surprised me. He'll actually ask about my health and ask what my doctor said and so on. My mom never asks, always just lectures. I'm so tired of it. I'm sorry you have one of "those" mothers too. :(
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He's going off what my GI found, something in my bloods that relates with celiac and he's going off symptoms for Crohn's too.Just seems the only two things to fit it.
He's going to get my GI if she agrees to start me on a low dose of crohns meds and see if I respond.

I'm 25 and apparently it can be harder to detect.

That's all I know anyways.

My mum has type 2 diabetes and she got that because of a life time of bad eating and she compares that too by two possible outcomes?
She is very competitive with me and its pathetic, maybe we should get our mums together lol
I've just told her off lol she's been this way my whole life. I was born with epilepsy and nearly died a few times and she acts as if she was the one with it and not me, she just wants attention.

She self diagnosed herself lol omg

My dad has been very good x
 
What kind of meds are they going to try, have they said? Also, I should have mentioned this earlier but it slipped my mind - it IS possible to have both Crohn's and celiac. I hope you don't have both, but it's not uncommon to have both. I hope that's not the case for you though.

I'm sorry your mother is like that. Mine is crazy, her parents both died of cancer when she was young so she goes kind of nuts trying to prevent cancer in herself (she runs marathons, eats really healthy, etc). I think, me getting sick, it just somehow made her crazier and she had to try to find a way to try to "fix" me, or something like that. She's too far out there to realize how damaging she's actually being. Deep down I think she means well, but it's not helpful to me at all. Gluten isn't my issue but she can't not fixate on that for some odd reason.
 
Lol well that would be being an over achiever.
Asacol it's called, it's just a trial.

:( aw that is sad but she shouldn't treat you like that, maybe she's just scared she's going to lose you too. It is odd for her to focus so much on that but maybe if she does that then she won't have to accept its something else, gives her control which I guess she must of felt she lost when her parents passed, the unknown is always harder for people with control issues so that's why she wants it to be that.

X
 
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Cat-a-Tonic said:
lsgs, what's a turbo trainer? Is that one of those things you put on your bicycle so that you can ride indoors, it basically turns it into a stationary bike? Have fun with it! I know you've been wanting to ride again, and I hope you can get outside for a proper ride once you feel confident enough to.
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tacx-turbo-trainer-mat.jpg


This is a turbo trainer! I like it cause I get to use my road bike with it, I find exercise bikes a lot more boring for some reason. Hopefully once I've built up some fitness indoors I can take my bike outdoors. I am just hoping it can be fixed :)
 
How annoying is having to constantly run to the bathroom with d and waiting on a phone call you really don't want to miss? lol.

I'm so glad I have somewhere that people will understand :p
 
I had the blood test for celiac and it came back negative. I didn't know it was unreliable, that sucks because after the blood test both of my docs were positive it's not celiac. I can't seem to tolerate gluten very well though. The GI I saw did say most of my symptoms and trigger foods seem to fit Crohn's but he think I still might not have it because I don't get diarrhea hardly ever. He put me on docusate sodium (I'm up to four a day now) plus fiber con and probiotics, but I am still constipated as all get out. Still don't even go every day! It's better than having constant diarrhea but still frustrating.

When I am not flaring and can eat regular foods, I get terrible heartburn from doughnuts. Seems like the combination of sugar and fat is not popular with my system! And most fried foods will make me quite sick to my stomach. When I was pregnant I did get heartburn a lot too, and drank a TON of milk (good thing I didn't have the lactose problem back then).

Cat and Bluebird, you guys make me feel pretty lucky to have the supportive mom I have. She's a watchdog and tells me I'm too thin all the time, but she totally believes what I have wrong and tries to help any way she can. One of my friends was nearly in tears Saturday night because of my brain tumor and upcoming surgery and she pulled him aside and told him he needed to be strong because I was trying to comfort him and she said I can't do that right now. She's kind of the other way than disbelief!
 
Bluebird, I was on Asacol for a couple of years (they recently stopped making it in the US as the patent is up, so I had to switch to a different but very similar med called Delzicol). It's a very mild med, it's a mesalamine-based drug which is the mildes of the Crohn's treatments. It's used more for maintenance of remission than it is to get a flare under control - so it may not do much for you because of that and the fact that it is so mild. It is basically like rubbing a soothing salve on your intestines - the problem with that is, that Crohn's can affect the entire thickness of the bowel. So if you're putting medication on the surface only, it's not going to penetrate deeper. In other words, it might work - but don't get bummed if it doesn't. It helped me maintain remission for a good couple of years, but now that I seem to be flaring, Delzicol is not doing much to keep things under control. Anyway, definitely give it a shot, it could help and there's a low risk of side effects.

lsgs, I get *so* bored by my exercise bike too. But I just cannot ride my regular bike right now, not even on one of those turbo trainer things. I find I use my abdominal muscles too much when balancing on a bicycle, and it causes me tons of trouble (the bleeding episodes first started after bike rides). I have a recumbent stationary bike, so I can sit back and not use my abdominals nearly as much, and that doesn't cause me gut trouble. But yes, it's super boring. I have my stationary bike set up with a TV and DVD player in front of it, and a Roku box too, so I can watch whatever I want (the Roku box has Netflix, Hulu, etc) but I still find myself wishing I was actually going somewhere out in the fresh air, rather than just pedaling while staying still in my spare bedroom. :p

Bozzy, yep, niece or nephew # 5 is on their way, I believe sis-in-law said she's due in October. She has 2 girls and 2 boys, she said she's hoping for another girl. But this one was a total surprise, sis-in-law is not very strict about using birth control it seems! :p She told me she and her husband only use condoms, no other form of BC. I know kid #1 and #4 and soon to be #5 were all oopsies. #3 was planned (they had 2 girls and wanted to try for a boy), and I'm not sure if #2 was planned or not. So yeah, more than half her kids were "oops" - not a very good track record for my sis!

Cindy, yeah, the blood test for celiac is not definitive by any means. It's also possible to have a gluten sensitivity without having celiac. My understanding is, celiac means gluten causes both symptoms and intestinal damage. Gluten sensitivity causes symptoms, but no damage, so you'd look fine on biopsy and wouldn't cause yourself actual harm by eating gluten, but you'd feel crappy. I'm glad you have a supportive mother, that must be so nice. It sounds like you have good friends too! I think I have to disagree though, sometimes I get constipated if I take too many meds (too much Zofran will constipate me), and I would way rather have diarrhea than constipation. Yes, it's miserable to go and go and go, but I'd rather have things moving through me than not. Constipation is like torture! D is no picnic, but in a way I'm somewhat glad that I'm much more prone to d than to c. There's nothing like a nice normal poo, though! In remission I've had some that were so perfect I was tempted to take a picture! :p Ha ha.

How's everyone else doing today? I'm feeling kind of crappy. Had a bad episode of d last night and another this morning. My guts are grumbly so I'm taking it easy food-wise. Oddly, though - my libido is going kind of nuts lately! Like I said before, if this is a flare, it's the weirdest flare ever. Usually in a flare, sex is the farthest thing from my mind. But lately I can't get it off my mind! :p Very, very odd. Well, at least my hubby is happy. ;) It's totally weird though, my body is throwing such odd stuff my way lately. The issue with my lips is not improving either and that one is also very odd, I've never had a flare before where my lips were affected. They feel super dry all the time (I've been slathering on lotion and lip gloss to no avail), and my top lip is numb most mornings. Then in the afternoons the skin on my lips goes from dry to peeling off. There is blotchy redness on my lips that sticks around all the time, whether numb or dry or peeling. It's like this every day lately. It's not painful or anything, but it's really annoying and weird. I do not understand anything that my body does lately. I'm definitely calling my GI after my rheumy appt, we need to get this stuff figured out.
 
Cat,
you definitely have something odd going on with your lips! Hopefully it's something simple and an easy fix. Your hubby must be one happy dude with the sex drive thing! I know mine has not been up to usual lately which is odd for me, but I'm thinking it has something to do with the brain tumor, most likely. So hopefully after surgery.....

And you are right, constipation is no fun. It's gotten to the point where I'm excited when I do go and tell my hubs about it. Fortunately he just laughs at me and doesn't get grossed out!
 
hey all

visited GI on Monday, and he was really good. he's just like my GP - actually suspect they went to med school together... or at least know each other. it went as suspected... he feels it is likely to be crohns, given symptoms, history and the calprotectin, but not ruling out cancer yet (guess they can't without having a proper look for it). getting me in for the next available appointment for colonoscopy, and doesn't want to prescribe me anything until he knows the haps. I've said to my husband that i'm going to book into a fancy hotel room for the prep - nice bathroom! a cleaner! warmer than our house! genius. mum thought it was hilarious.

talked to my boss and have cut my hours back to 0.8 - will work two days in my office and two days at home (they're setting me up with full remote access to our systems and laptops and whatnot), with fridays off (if i can manage to stay away), and have to promise not to still try to work 60hrs... oops. i offered the 0.8 as a token of good will - i know i'm nowhere near doing as much as i should/would usually. my boss said he was happy for that only because it means i'm less likely to feel like i have to do as much work :)

at home today - in bed with cat curled up. have already written my monthly BI trends and analysis report for our communications board (give or take some stats that I've got someone sending through to me), and have been on the phone to the minister's office and my boss, providing research for an urgent question in the House. and it's only lunchtime! working at home is good.

i'm just ranting. i actually feel awful. my husband is not coping at all... bless his heart - he doesn't like to see me unwell :( i'm usually the strong one, but i don't have the energy to make him ok too.

self-obsessed me, at the moment.

still sending love to you all.
xLT
 
Just make sure you bring enough "supplies" with you to the hotel, Lenatilde! For prep, you're going to want flushable wet wipes & soothing barrier cream (you're going to get pretty sore back there), a variety of clear liquids and whatever else is allowed (things like clear broth, sports drinks that aren't red, jell-o that isn't red, etc), and so on. I always like to light scented candles and have some nice bubble bath on hand, soothing music playing, whatever I can do to make myself more comfortable during prep. And of course I need to have portable entertainment - my Kindle is usually my go-to. Prep is typically the worst part of the colonoscopy experience - I'm glad you're thinking ahead to have a hotel room, but just make sure you don't forget to bring any of the comforts of home! :) Good luck with the scope, keep us posted on when it'll be and how it all goes. And of course feel free to ask us any questions, I think we've all been scoped at least once!

How's everyone else doing today? I was looking forward to the long weekend - tomorrow is Independence day here, so no work for me. And I'm taking Friday off so I'll have a 4-day weekend. :) But yesterday, hubby's boss said he has to work Thurs- Sun so he'll be working the entire time I'm off! :( (I'm hoping the boss made a mistake and forgot that Thursday is a holiday.) We were going to take the kayak out and spend some nice time together, but now it looks like I'll be on my own. Hmph! Well, I'm fine having alone time too, and we do need the money so I know it's best that hubby works all the hours he can, but it still kind of sucks in a way. Oh well, that's life I guess.

Health-wise I'm still not great - had a fairly normal poo last night, but was back to d this morning. Lips are worse today than they have been, so I ran to the grocery store and found some vitamin B6 on sale and am going to try that and see if it helps any. (Thanks Cindy for the tip about that!) My lips were seriously so numb this morning that I got kind of happy when it was afternoon and they started peeling - I peeled off as much skin from my lips as I could just so that I could have some feeling in them again! They feel raw now, but honestly raw feels better than numb. :p Putting menthol lip gloss on raw lips feels all tingly and like it's doing something, whereas putting lip gloss on numb lips doesn't feel like it's doing anything. I really hope these vitamins stop my lips from doing this!
 
bozzylozzy said:
Bluebird - glad to see your GI is working on a diagnosis.. have you tried being gluten free before? Sucks that you might have Crohn's too :(

Me and Cat have rambled about our mothers before.. but I cant believe what your mum said! I wonder if these AI illnesses also come with "annoying awful mother syndrome" boy did we draw the short straw!! Lol

Cat - your SIL is pregnant again!?!?! Wow.. and this will be the 5th? She deserves either a medal or to be taken away by men in white coats lol!!

Lsgs - I totally know what you mean. Guaranteed the call will happen when you are on the loo too.
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Nope I've never tried a glutton free diet, bit annoying as I already can't eat hardly anything so if they say it is celiac then I'm screwed is the nicest way of putting it lol I dunno I think it will either turn out to be both like Cat was saying or I reckon it may be Crohns.
If it was just glutton I could handle it because I know you can get a lot of foods glutton free.

Yeah I swear we should get our mums together and then they can argue between each other lol
I think people struggle to understand because they think if something isn't cancer then "it's not that bad" which annoys me, it's ignorance.
I'm not one for fuss but it would be nice if people took things a bit more seriously.
Also I wish people would understand that it's not just about not eating certain things and losing weight which people like to make continues jokes about like "I wish I could lose weight" lol like oh yea I love being like this.
I think people want to be positive which is fine and I do make jokes myself but at the end of the day it's not fun n games as you guys know.
 
Cat-a-Tonic said:
Bluebird, I was on Asacol for a couple of years (they recently stopped making it in the US as the patent is up, so I had to switch to a different but very similar med called Delzicol). It's a very mild med, it's a mesalamine-based drug which is the mildes of the Crohn's treatments. It's used more for maintenance of remission than it is to get a flare under control - so it may not do much for you because of that and the fact that it is so mild. It is basically like rubbing a soothing salve on your intestines - the problem with that is, that Crohn's can affect the entire thickness of the bowel. So if you're putting medication on the surface only, it's not going to penetrate deeper. In other words, it might work - but don't get bummed if it doesn't. It helped me maintain remission for a good couple of years, but now that I seem to be flaring, Delzicol is not doing much to keep things under control. Anyway, definitely give it a shot, it could help and there's a low risk of side effects.
Click to expand...

I looked up the meds and yeah I saw something about them no longer being sold but thanks for verifying that for me x
I think my GP just wants to see if it works but it obviously comes down to what my GP thinks.
If they can't sort me then they will send me to Georgetown in Washington as apparently Southern Maryland isn't that hi tech lol those where my gps words haha

How you doing today? How's everyone else?
Lots of love to everyone xx
 
Bluebird, that's interesting that your GP would say that the hospital you go to isn't "high tech"! I have found that high tech doesn't mean a whole lot, I go to a fancy schmantsy high tech teaching hospital and they do all sorts of cool stuff and have pioneered various treatments and things like that - but they still can't diagnose me so go figure! :p It seems to me like a good doctor means a lot more than good technology.

I'm pretty sure now that I'm flaring. My guts woke me up at 3 AM with nausea and an urgent need to go to the bathroom. It's just past 4 AM now and I'm feeling somewhat better now that I have my heating pad on and have taken some Zofran, but still not feeling great. Good thing I already took today off of work, so I can rest up today, but it's frustrating feeling like this. I feel like a full night's sleep is something so basic, and my body can't even give that to me, it's like its not even trying. I put in all this effort to be healthy, and my body is just like, meh, whatever, you don't really need sleep or food to live do you? :p

I see that Bozzy's headed to her surgery shortly. Good luck Bozzy!!

I'm going to attempt to go back to sleep. Wish me luck. Good night/morning all!
 
Thanks Lenatilde - I tried going back to sleep, had to get up a couple more times, but finally managed to get back to sleep at around 5 AM I think? Slept fairly well until 9:30 so I did get some sleep. :) My guts feel somewhat better, I'm pretty empty I think at this point. :p I feel kind of like a zombie though, my body clearly didn't like having a middle of the night episode like that. I haven't attempted to eat yet today either so I don't know what'll happen when I try to put some food in me.

I'm mad because today was supposed to be my day of getting stuff done. Hubby works all day today so I was going to do laundry and go grocery shopping and hit the gym too. I know the gym is out now, but I still stubbornly want to do everything else. I've been pretty functional so far during this flare, I don't want to let it stop me now.
 
Cat-a-Tonic said:
Bluebird, that's interesting that your GP would say that the hospital you go to isn't "high tech"! I have found that high tech doesn't mean a whole lot, I go to a fancy schmantsy high tech teaching hospital and they do all sorts of cool stuff and have pioneered various treatments and things like that - but they still can't diagnose me so go figure! :p It seems to me like a good doctor means a lot more than good technology.

I'm pretty sure now that I'm flaring. My guts woke me up at 3 AM with nausea and an urgent need to go to the bathroom. It's just past 4 AM now and I'm feeling somewhat better now that I have my heating pad on and have taken some Zofran, but still not feeling great. Good thing I already took today off of work, so I can rest up today, but it's frustrating feeling like this. I feel like a full night's sleep is something so basic, and my body can't even give that to me, it's like its not even trying. I put in all this effort to be healthy, and my body is just like, meh, whatever, you don't really need sleep or food to live do you? :p

I see that Bozzy's headed to her surgery shortly. Good luck Bozzy!!

I'm going to attempt to go back to sleep. Wish me luck. Good night/morning all!
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Awe good luck Bozzy!!! Make sure you get treated like a queen when your in recovery :) x

Cat: lol he made me laugh, he's a really nice dr though but I dunno hopefully they decide what it is but I won't hold my breath ;) ha

Poor you darlin, :((( are you okay now?

I tried having a low fat beef burger yesterday but it hurt, nowhere near what the one I tried in cheeseburger in paradise but still, I knew I shouldn't of but we had this BBQ for 4th of July ( yes I'm a Brit celebrating 4th of July lol) my own silly fault.
 
Grr just made my husband and I a hot drink and used normal milk in mine and didn't realize till I drank 3/4 of it -___- now I feel icky, I'm a daft cow at times lol
 
I feel for you, Bluebird, I can't do beef nor dairy either. Have you tried substituting ground turkey in place of beef? I do that all the time and it usually goes quite well for me. I also do almond milk in place of real milk - if you do almond milk, just make sure to get one that doesn't contain carrageenan as that can cause us even worse tummy troubles.

I'm doing a little better. Just had some toast and so far so good. Being stubborn, I'm going to go out and run a bunch of errands soon. I'm pretty sure that's a bad idea but I just don't care anymore. :p

Bozzy is out of surgery! She didn't give many details, she said she's pretty out of it. The fact that she's posting updates on FB already makes me think it must have went well. Yay Bozzy! :)
 
darn, a flare.... I was hoping perhaps it wasn't. :( I'm sorry Cat! Not feeling that well myself this week, lots of nausea and some pain. I dunno if the nausea is from the tumor or the belly. Ugh. I hope you feel better, girl!
 
Bluebird, I'm with Cat. I can't do beef or dairy either! But I do love turkey burgers so they are a great substitute for beef burgers. Almond milk is also my friend!

Thinking of bozzy, hope she's feeling great.
 
Cat:I'm glad you feel a bit better, I see you also don't like to do as your tummy tells you LOL but I wish I hadn't been so dopey, been sick and feel crap and have to go out to practice driving -___- boooo!

Cat/ Cindy: I haven't tried turkey!! I shall! I'm a girl who loves her meat I think I was a T. rex in my previous life haha I have soya milk which seems okay but a British cuppa with soya isn't the same, you need cows milk so I've been missing my tea but people say drink it without milk and I hate it and I just would rather not bother. Tried peppermint tea the other day and I nearly was nearly sick lol how dramatic but I just don't like other teas other than black .... With milk :/

Have you ladies tried veggie burgers and veggie sausages?

One of my friends has a infection so for about 8 months she's had to cut out certain foods so she was banging on (English slang for talking a lot) about all these extreme diets she's been doing because when its gone then she can eat normally and well she just kept telling me what I should do -___- I humoured her but I'm like its not really the same and when I updated her on my situation shall we call it then she's like "oh but it can go into remission" I hear it can but it was the way she said it (how much of a woman do i sound? lol) but I just don't think people get the severity of what we go through?

Aww I'm glad Bozzy is doing okay :) poor chickadee xx

By the way did everyone have a good 4th of July? X
 
Bluebird, I'm the opposite, I can't do anything but herbal caffeine-free teas (caffeine triggers migraines for me) so I rely on stuff like chamomile, ginger, and sometimes peppermint tea. (You're not supposed to have peppermint tea if you have GERD, as it can make that worse, but it's very soothing and I have some every once in awhile.) I don't put milk in my tea. But now that I've been doing almond milk for awhile, I honestly can't even remember what regular milk even tastes like. Almond milk is really creamy and delicious, it's much better than the other milk-alternatives. Soy milk is okay, rice milk I found to be really watery.

Have fun with your driving practice! I love to drive, it relaxes me so much. If I'm by myself in the car, I can crank my music or talk to myself and vent out some feelings, cry, whatever I need to do to feel okay. My car is like my own little cocoon. :)

Cindy, yeah, I'm going with the assumption that this is a flare, although honestly I'm still not totally sure what's going on. I still haven't had night sweats, paleness, going 20+ times in a day, etc. Those things have all been pretty standard for my flares up until now. But things are definitely not right, so it's either got to be a flare or something new, right? I refuse to take on any new illnesses! :p I already have IBD, GERD, arthritis, funky "nodules" on my liver, probable OCD, and possible Asperger's. If this is something new, I just don't know what I'll do! So a flare is the better possibility and I'm going with that for now.

I was feeling somewhat better - I ate toast without issue - so I decided to run some errands. I had a ton of things to do and I ended up going to like 6 different places. My last stop was the grocery store, and as I was waiting in line to check out, I felt hot and dizzy and like I might pass out. I think I pushed myself too hard, so I came home and am resting now with my heating pad on, having some gatorade and a snack. I'm feeling a little better again, no longer in danger of passing out anyway. Going to rest up the rest of the day. I can rest all day tomorrow too - I need to be functional by Sunday though, as it's my grandma's birthday party that day and I can't miss that. But if I could survive all those errands today, then surely I can survive eating a bit of cake on Sunday, right?
 
See the caffeine in tea doesn't bother me it makes me pee slot lol but it's only coffee that does not make things good at all :/

What is GERD? Maybe I shall google it.

I took your recommendation and got minced chicken, I know you said turkey but they had ran out -__- so I thought 50% fat free minced chicken was the next best thing!!! So will make my own burgers in a min minus onions because if I eat onions they make my stomach kill :(

Go rest up! Naughty you for doing too much but then again I can't blame you, frustrating when you need to get stuff done.

Mmmmm cakkkeeee *drools* maybe you could have a little nibble just to check its okay for everyone else ya know? Take one for the team ;) ha xx
 
Thanks for the well wishes everybody!
I am on hourly observations.. so im wide awake..

My neck is stiff.. and they have just put a catheter in because I couldnt pee haha!!

I cannot even begin the describe the fiasco going on in the next bay... im in the neurosurgery high dependency unit. And there is a woman who is accusing the nurses of stealing and threatening to call the police.
(This isnt true! The nurses are lovely.. and I think the old woman is not "all there")

I will explain more tomorrow.

This hospital is great.. before surgery they did some acupuncture to my wrist to help with post operative sickness. *touch wood* I think its working!
:hug: xxx
 
do you guys think it possible for a proton pump inhibitor such as omeprazole to be causing nausea and stomach bloating/aches?

Ive just been reading my diary, and the daily nausea and stomach discomfort only really came on after i started omeprazole after a very painful and explosive acid reflux event...
diarrhoea and stomach pain has always been around though for years...
worth scaling back on the omeprazole as a trial do ou think? 40 mg atm... might ak dr on monday if we can gradually reduce it to 10 mg then one every other day etc,
 
Bluebird, GERD is gastric esophageal reflux disease. Basically it means I have chronic acid reflux. My GERD is severe and isn't particularly well-controlled, I reflux the majority of the time even though I'm taking multiple medications for it. I had a test done a little while back to test the severity of my GERD. They give you a score - zero means you are fine, and 100 means you have like the worst GERD ever. I scored a 95. :p I had something like 48 separate episodes of reflux during the 24 hour test, and the longest episode was like 5 hours I think? And I did that test while taking all my medications as usual. So yeah, my GERD is bad!

Chicken burgers sound yummy. :) If you can find ground turkey, you can make burgers or meatballs or whatever you'd use ground beef in. Turkey meatballs are yummy with spaghetti, mmm. I'm making myself hungry!

You mentioned having issues with onions - can you do garlic? I can't do raw onion or garlic in any form, but I can do cooked onion okay. Like sauteed with some olive oil and mixed in with pasta, that's fine on my tummy. Garlic, however, does terrible things to me. I'm not sure why that is.

Yes, cake! I will definitely take one for the team, especially if it's chocolate cake. :D Yum!
 
Charlotte, it's possible Omeprazole is causing your symptoms. If you take too much, it could possibly be reducing the acid in your stomach too much to the point where things aren't getting broken down properly. That started to happen to me when I was on 80 mg of Nexium (esomeprazole), I suddenly couldn't break down my Asacol tablets because my pH was too low. Or maybe you are just having a side effect or mild allergy to the omeprazole? There are lots of other reflux meds to try, so maybe ask your doc about switching to something else if a lower dose doesn't change things.

Bozzy! Glad to hear from you hun! Glad everything is going okay, although that sucks that you have to wake up every hour! I've heard good things about acupuncture so I'm glad that went well for you too. Are they going to let you sleep or will they keep checking you hourly during the night?
 
I just dozed off in that last hour.. but im on hourly obs until 4am I think (its midnight now)
I thinks thats because I came ou of theatre around 4pm.. so that is 12 hrs.

She keeps checking my pupils with a light and asking me what month/year it is haha..
Oh well im not too bothered.. because I cant sleep long due to my neck becoming stiff.
 
Cat-a-Tonic said:
Bluebird, GERD is gastric esophageal reflux disease. Basically it means I have chronic acid reflux. My GERD is severe and isn't particularly well-controlled, I reflux the majority of the time even though I'm taking multiple medications for it. I had a test done a little while back to test the severity of my GERD. They give you a score - zero means you are fine, and 100 means you have like the worst GERD ever. I scored a 95. :p I had something like 48 separate episodes of reflux during the 24 hour test, and the longest episode was like 5 hours I think? And I did that test while taking all my medications as usual. So yeah, my GERD is bad!

Chicken burgers sound yummy. :) If you can find ground turkey, you can make burgers or meatballs or whatever you'd use ground beef in. Turkey meatballs are yummy with spaghetti, mmm. I'm making myself hungry!

You mentioned having issues with onions - can you do garlic? I can't do raw onion or garlic in any form, but I can do cooked onion okay. Like sauteed with some olive oil and mixed in with pasta, that's fine on my tummy. Garlic, however, does terrible things to me. I'm not sure why that is.

Yes, cake! I will definitely take one for the team, especially if it's chocolate cake. :D Yum!
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The burgers turned out okay but I made them too spicy :/ I can eat garlic and I think I manage okay with it.

Wow, good lord 95!!!! I'm pretty sure you deserve a trophy for putting up with that!
It doesn't sound nice at all :( poor you Hun x

What a legend ;) thata girl!! I'm eyeing up cheesecake in the fridge but I daren't! *drools* omnomnomnoms!
 
Hi everyone just stopping in for a wee update. Hope you are all well (as if we ever are, but as well as you can be!)
Just out of hospital with a partial blockage in my large bowel. I've been told to eat only liquid food and take a lot of laxatives. Apparently my potassium levels are dangerously low-maybe explains why I have tremors constantly. People keep asking me am I cold!! It's so embarrassing as its summer here and I've spilt so much juice water etc over myself when I've been out its not a good look. My GI came over to see me when I came in and said he would bump my appointment up to discuss my faecal calprotectin results and he said we might start treatment. I don't know if this means a diagnosis or what! He said he wants to scope me again-sadly :/ They wouldn't give me much pain relief in hospital which I think was just cruel. But opiates and the bowel don't work we'll together so they put me on a laxative. I though this was odd as I have crohnic diarrhoea but aparent the blockage is making it over flow diarrhoea. I'm so confused and in so much pain I just want treatment. Does anyone know how long it takes for general IBD treatment to start working?
Hope you are felling better Boozey take things easy.
Xxx
 
Hi Gabi! How fast treatment works depends on which treatment they put you on. If prednisone, it should start working within a few days or so. If Entocort, it should start working within a few weeks. And if they put you on something like azathioprine, it takes something like 3 months to build up in your system enough that it works.

Do you get cramps in your legs/feet? I have borderline low potassium most of the time, and particularly when I sweat/work out, my toes and feet will sometimes cramp up horribly. What are they going to do about your potassium levels?

Good luck with your appointment and scope - please keep us posted on how it all goes!
 
Bozzy hope you're doing okay!!! Keep us updated! :D

Gabi, sorry to hear you've got a partial blockage, sounds extremely painful. I sent you a pm about FCP results. As Cat said, steroids work incredibly quickly but aren't meant for long term use, normally you're then put on an immunosuppressant of some description. Steroids worked literally within days for me.

I've just been out for my first cycle and had reasonable success. Turbo was broken so decided to just take my bike out anyway. Absolutely loved it but reflux played up a bit. Hopefully I can keep it up :) It was only 2 miles but 2 miles in the right direction :)
 
lsgs, glad to hear you got out for a ride! :) My reflux plays up every single time I work out too, so I feel for you. Here are a few things I've learned about controlling reflux while exercising:

Don't eat for 1 to 2 hours before working out. For me I have to wait at least 2 hours, no food and nothing but water before a workout. If I even have so much as a sports drink, I'll get too nauseous during my workout and will have to stop.

Don't eat anything at any point in the day that may give you the burps or the vurps (vomity burps). I can't have bananas before a workout because I get terrible banana vurps when working out. I also can't have sardines before a workout - fishy burps, yuck!

The more work my abdominal muscles do, the more I reflux. If I can find a way to use my other muscles and take some of the pressure off my abdomen, I can work out longer and feel better overall.

I take a Zantac and a handful of Tums shortly before working out. Most people probably won't need that many antacids, but play around with it and see what works for you in terms of pre-medicating before a workout.

If you're really prone to reflux, don't drink too much water during a workout. I find that even plain water will sit in my stomach and start to come up my throat if I've drank too much. If you do feel stuff coming up your throat during a workout, by all means do drink water to get it to go back down again!

This is all probably a bit extreme but it's what works for my severe GERD.
 
Hi all! :) Not getting on every day but after surgery on Thursday I probably will I'll be bored! lol
I love ground turkey and use it a lot in place of ground beef. I think turkey burgers are better than regular! I also love garlic and seem to tolerate it well, cooked anyway. I don't tolerate onions though. (that's okay, i don't like them anyway!)
Hello bozzy, glad to see you're doing well after surgery! Keeping my fingers crossed that my own goes as well this Thursday.
 
Hey Cindy, sending you lots of luck for your surgery! Okay, so I don't really believe in luck, but I am very good at finding 4 leaf clovers, so that's got to be worth something, right? :p At any rate, I'm already rambling this early in my post, but I hope everything goes really well and am looking forward to hearing some good updates from you! :)

How's everyone else doing? I'm not so great. My arthritis is playing up quite a bit today (good thing I see the rheumy on Wednesday!) and my guts aren't so good either. I had a rough weekend symptom-wise and didn't do myself any favors by eating things I shouldn't have yesterday at my grandma's birthday party (the only cake was carrot cake, yuck, so I had key lime pie and ice cream instead - my grandma always provides a lot of desserts!). It's ridiculously warm and humid here today which doesn't help my guts either, so I'm kind of a mess. I'm really looking forward to Wednesday, I hope to make some progress on figuring out my arthritis, and once I get that appointment out of the way then I can call my GI and tell him I think I'm flaring and request a colonoscopy. I just hope the rheumy is good! If he's bad and I request a new referral to a different rheumy, I'll likely be in for another 4-month wait, and that obviously will not be good. I think I need to find some more 4-leaf clovers for luck... ;)
 
Wow, I just spent the last two days reading through these and to say it’s a relief to find out that I’m not stranded on my own desert island like I thought I was, is a relief words simply can’t describe ;.;

I’ve seen 3 different GP’s now…out of the three, one of them has told me;

“I’m very underweight, and show all the clinical signs of depression; (i.e. slow movements, dark bags under my eyes from lack of sleep and the most amusing; because I'm really pale -.-) so I’m simply attention seeking and need to see a councillor not waste his time.”

Yes, I am underweight; my mum weighs me regularly and I’m 93 lbs. But it’s not from lack of eating, I do eat. Just within 20–45 min’s I have to go to the bathroom…so I’m eating and never gaining the weight from it.

Then we have the other two doctors who have basically told me to eat the food I know sets my body off, then go back…

They don’t seem to get that I can’t move when I eat taboo foods. I know if I eat nuts then just lie in bed like people suggest I do, I'll end up spending up to 5 hours in the bathroom and sadly, toilets aren’t mobile…so I feel like I’m stuck.

They’re the only doctors near where I live, and they more or less refuse to even do anything till I “prove” to them that this is happening! :(

They don’t even seem to listen to me when I tell them they took my appendix out for no reason nearly 5 years ago, and the nurses were so rude to me for “wasting NHS money” and kept calling me a baby cause I couldn’t handle “a little pain”, I just wanted to go home so I said I felt fine, when in reality it hurt no less and I then had inner and outer wounds to deal with…
I regret it now, big time since last Christmas was awful, but I’m sensitive and I don’t like people who are meant to be helping me, calling me a liar or a baby.

I even told them about when I was young (8-9) my mum had to rush me to the hospital because I was literally screaming in pain from my stomach, I couldn’t control my bowels and I was throwing up everywhere from the pain…it just goes in one ear and out the other…
My worst triggers are nuts and alcohol.

So I do think I’ve had this since I was 8-9 since though I drank a lot of milk when I was young, it never bothered me, it only bothers me now if I drink a lot, but my mum monitored how much I drank when young, and I never ate raw vegetables, I had what my mum made me and it was all cooked- but with the stomach aches I did get, chances are there's some other trigger foods I have yet to “re-find” ><

Plus, my sister is deadly allergic to nuts, so they were banned from the house till I finally got permission to have them when I was about 18 as long as I kept them in my room. And alcohol is pretty self-explanatory due to legal age - and I will never touch it again-

I was literally screaming for my mum to wake up (it was around 3am since I got in quite late as it was my first night up the pub) But, all she did was get me a bucket cause I was being sick, then she sat outside the bathroom, occasionally asking if I was okay since she was too tired to take me to the hospital…understandable now, but at the time it felt like she didn’t care...

I just don’t know what to do anymore ;( But knowing I’m not alone really does give some hope since I can learn from reading pages like this and find methods on how to control the pain should I eat something I shouldn’t by mistake (Nuts = the greatest evil)
And sorry for the rant/essay, just I have so much to moan about regarding this and I never knew such an open and friendly blog for these type of problems existed till now ;w;


I really, really, really hope all of you are doing okay, and those who have had surgery are recovering well, and others also going through a rough time right now get “better” soon :)

And sorry again for the essay ;w;
 
Good Afternoon My lovelies

just have a question id like to ask everyone re food

I have someone who says they have been told they have Crohns of the colon and small bowel, but what baffles me is that they are still able to eat things like Macdonalds kfc drink fizzy drinks like coke and pepsi basically all the bad foods
but yet I have just have to smell a burger and im on loo in bloody agony
fizzy drinks is like drinking battery acid I have to eat clean and fresh and water herbal tea and cordals

is there anyone on here that can pretty much eat what they want like the foods and drinks above

or like me is an absolute no go

all the best

xxx
 
Hi Ronai, welcome to the forum and the club. You are not alone anymore! I'm glad you found us. :) It sounds to me like you need a new doctor who takes you seriously. Are you able to travel to a larger city where there are more/better doctors? These 3 doctors you mentioned are all GPs, right? Could you get a referral from one of them to a gastroenterologist (GI)? (Folks in the UK, can someone help out with better advice? I don't know the ins and outs of the NHS.)

No worries about writing a lot. You've been through a lot! I'm so sorry that no medical professional has taken you seriously yet. Don't let it get you down - you know you're ill, you know it's not "just a little pain" and you know it's not all in your head. You've got to be strong and keep fighting, and don't let them send you away without helping you at all. Believe me, I'm the meekest shyest person around, but being ill and undiagnosed has taught me to stand up for myself, educate myself, and be able to argue with my doctors for the treatment I feel I need. These doctors don't live in your body so they have no idea, and it sounds like your mom isn't really advocating for you, so you're going to have to be your own advocate. It's hard, but you can do it, and we're all here to support you. :) Hang in there! If it were me, I'd either go to a new doctor ASAP or go back to the best GP of the 3 and ask for a GI referral and some tests. If you haven't had bloodwork or stool tests, I'd start there, then ask for a colonoscopy. Good luck!

Stacey, I can't handle a lot of foods either - even when I was in remission I couldn't! Fried food, dairy, red meat, nuts & seeds, caffeine, carbonated drinks, high-fat foods, coconut, high-fiber foods - none of it does good things for me even when I'm feeling really well. We're all different, so yes, some IBD'ers can eat whatever they want. Some have a few trigger foods, and some people like you and I have a lot of triggers and have to be really careful about our diets! It sucks, I know. Have you found some good safe things you can eat? How are you getting on with treatment, did they put you on any medications?
 
Hi stacey.. I can drink and eat those things just fine. Although they are bad for you.. it is not high in fibre and fibre is generally what triggers most people.

Obviously im undiagnosed.. but I cant have, chilli, eggs or soy sauce. However.. if my tummy is fine - I can eat those things.

I think it's just different for everyone. But dont you have it in the stomach?? That might be why you are more sensitive to these things :(

Just a quick update. been in awful pain since yesterday. . None of the pain meds are helping. Had another CT scan which was fine.. and bloods were fine.. so no infection and no more surgery! ! Yay
 
Hi Cat

My diet is boring specially for a foody like I used to be

nope im on diets of chicken rice salad veggies

big big no is fried foods processed foods diary bread I have not had a fizzy drink in almost a year now I tried some of a friends cider it was only a small sip and I was so sick, I only drink herbal teas no milk at all ice tea water and dilute fruit juices I cant drink fresh juices as that just goes right through me and the pain and bloating is immense and the same list you have as well :( sucks really but at least we are eating clean :)

I got asked today when was my baby due ( im a size 8 and defiantly not pregnant ) all because my belly is so swollen and bloated not at all happy about that

I'm on
Amitriptyline 10mg 1 a day
iron supplements 3 tabs a day
Mebeverine 135 mg 20 mins before meals
Lansoprazole 15mg 20 mins before food
Diclofenac 150mg 2 times a day
I really don't want to go on to any form of steroids but the GI is happy at the mo and im ok so apart from my pants diet of really boring foods even through they really healthy and my weight is staying at a decent 9st - 9st 2lbs so between 126lbs - 128lbs much better than the 8st 8lbs 124lbs that I was 3 months ago
I have gone from eating about 300-600 cals per day to about 1000-1500 which is very good


Hope everyone is well

xxxx
 
Stacey I can eat whatever I want since having treatment. Prior to that I had an extremely limited diet.

Bozzy have you told them the pain meds aren't working?
 
Hi all, I just got back from my rheumy appt. I think it went quite well! He examined me thoroughly and did a bit of bloodwork, CRP and ESR and one other thing that I already forgot. :p I told him a brief synopsis of my history with the probable IBD and all that. He said that if it's inflammatory arthritis, then, given my symptoms & history, the arthritis is "definitely" related/being caused by the IBD. He even said that since my IBD isn't fully diagnosed, it sounds to him like the arthritis is an important piece of the diagnostic puzzle to me, and he said he can certainly give me that puzzle piece. That was awesome that he said that! I hope it's true!

He did say that the most common joints in the body that IBD affects are the sacro-iliac joints, and that's what seems to be affected for me. So this will be a major puzzle piece if it's confirmed that I have arthritis of an inflammatory nature in those specific joints.

So I like him, he seemed pretty good. He wasn't sure what to make of the x-rays and he didn't give me any diagnosis today. He felt like the images on my recent x-rays were a bit fuzzy so he would like to see things in better detail, and he's sending me to have an MRI. When he said MRI, I figured it'd be a 6 month wait like it was when I had my liver MRI. Nope, he had his staff get me into the soonest available slot - they could have gotten me in next week but my work schedule wouldn't have allowed that, so instead I'm going in the following week, on the 22nd. This means I may have my answers to my arthritis questions before my next GI appt (on Aug 7th)!! I wonder what my GI will say if I tell him I have inflammatory arthritis that's being caused by IBD. :p I feel like I'm getting so close now. I probably won't get an official IBD diagnosis even if I definitely have inflammatory arthritis, but the evidence is really starting to pile up in IBD's favor.
 
How's everyone doing today? It worries me when the thread goes a little quiet!

McCindy, I know you're having your surgery today - wishing you tons of luck, I hope they get the tumor all out and that it's not cancerous and that you go back to being your old self again after the surgery. I'll be checking your caring bridge page for updates! Thinking of you and hoping for the best!
 
To be honest I'm having a bad day, I was in pain yesterday and this morning I woke up in agony. I just gripped my pillow and forced myself to try and sleep through the pain and ended up breaking down in tears. Not to bear my heart but I feel like its a daily struggle sometimes and I always want people to see me as being strong and I always make jokes all the time to try and cover the fact I feel miserable because I don't want to ruin their illusion that I'm absolutely okay.
I had a eating disorder when I was 15 and it went on n off for a few years, it had nothing to do with weight but at the time I had a lot In my life going on. It's very hard to deal with being in pain and not want to go back to my old ways or to give up entirely.
It's been a tough day, I have no family over here and my friends don't understand, my husband works long hours so it can be really lonely.

I hate to feel like this because I guess I shouldn't moan because their are a lot of people who are worse off then I am. I don't feel sorry for myself but I think I'm just very frustrated because too some extent it's out of my control, I'm trying my best.

Anyways bla bla bla.

Hope everyone else is doing okay. I'm glad your making some progress Cat xx
 
Bluebird, hun, I'm so sorry that you're in such pain. First of all, sending you a big hug. Second of all, have you called your doctor? Please do tomorrow morning if this pain continues. And third, you ARE strong. It's okay to cry, it's okay to have bad days, it's okay to struggle. Your real strength is that you're not giving up - so please don't give up! I had an eating disorder in my teens as well and I have struggled with depression for years, so I know how hard it can get when you develop a tremendously challenging physical illness on top of that. Just keep fighting. I know you're trying your best, hun, and you just need to keep fighting. It's exhausting, and frustrating, it seems endless, and sometimes you feel like you're hitting nothing but dead ends and brick walls. I know, I've been there, I'm still there. There IS a light at the end of the tunnel. I won't lie, it may be a far distance off, and you may have to fight very hard to make it there, but this feeling is not forever. Diagnosis is possible, remission is wonderful, and there may yet be a cure within our lifetimes (read the stem cell threads & blogs if you don't believe me - they're doing some incredible stuff with stem cells).

Don't worry about not complaining because others may have it worse than you - there's always someone who is worse off, but that doesn't negate or lessen your pain or emotions. You're going through a lot and you have every right to complain, cry, vent, yell, scream, punch pillows, whatever you need to do! And we're here to listen, so just vent away all you need to. I think we've all had days like that where we don't feel strong and don't feel like fighting it anymore. And I know we're all strong, amazing warriors, because we did pick ourselves up and kept on fighting. It took me a long time to realize/accept that I *am* strong, even when I don't feel like it - I'm fighting a battle inside my own body every day, and dammit I'm a warrior! You guys all are too. :) I'm so proud of everyone here, you guys all are so strong and incredible. Even when you don't feel like it, you truly are.

I hope you can find some supportive people "in real life" to talk to because it doesn't sound like you have anyone. Have you looked into support groups through the CCFA (Crohn's & Colitis Foundation of America)? I looked on their website and found a couple local CCFA chapters in the Maryland area. You might want to contact them and see if they have local in-person support groups. Here's the info I found:
http://www.ccfa.org/chapters/#

Greater Washington D.C./Virginia Chapter
11300 Rockville Pike #1005
Rockville, MD 20852
(703) 865.6130 or (877) 807.5271
(703) 865.8873 (fax)
[email protected]

Maryland/Southern Delaware Chapter
1201 South Sharp Street #107
Baltimore, MD 21230
(443) 276.0861 or (800) 618.5583
(443) 276.0865 (fax)
[email protected]

Hang in there, hun. Brighter days are hopefully on the way very soon.
 
Cat-a-Tonic said:
Bluebird, hun, I'm so sorry that you're in such pain. First of all, sending you a big hug. Second of all, have you called your doctor? Please do tomorrow morning if this pain continues. And third, you ARE strong. It's okay to cry, it's okay to have bad days, it's okay to struggle. Your real strength is that you're not giving up - so please don't give up! I had an eating disorder in my teens as well and I have struggled with depression for years, so I know how hard it can get when you develop a tremendously challenging physical illness on top of that. Just keep fighting. I know you're trying your best, hun, and you just need to keep fighting. It's exhausting, and frustrating, it seems endless, and sometimes you feel like you're hitting nothing but dead ends and brick walls. I know, I've been there, I'm still there. There IS a light at the end of the tunnel. I won't lie, it may be a far distance off, and you may have to fight very hard to make it there, but this feeling is not forever. Diagnosis is possible, remission is wonderful, and there may yet be a cure within our lifetimes (read the stem cell threads & blogs if you don't believe me - they're doing some incredible stuff with stem cells).

Don't worry about not complaining because others may have it worse than you - there's always someone who is worse off, but that doesn't negate or lessen your pain or emotions. You're going through a lot and you have every right to complain, cry, vent, yell, scream, punch pillows, whatever you need to do! And we're here to listen, so just vent away all you need to. I think we've all had days like that where we don't feel strong and don't feel like fighting it anymore. And I know we're all strong, amazing warriors, because we did pick ourselves up and kept on fighting. It took me a long time to realize/accept that I *am* strong, even when I don't feel like it - I'm fighting a battle inside my own body every day, and dammit I'm a warrior! You guys all are too. :) I'm so proud of everyone here, you guys all are so strong and incredible. Even when you don't feel like it, you truly are.

I hope you can find some supportive people "in real life" to talk to because it doesn't sound like you have anyone. Have you looked into support groups through the CCFA (Crohn's & Colitis Foundation of America)? I looked on their website and found a couple local CCFA chapters in the Maryland area. You might want to contact them and see if they have local in-person support groups. Here's the info I found:
http://www.ccfa.org/chapters/#

Greater Washington D.C./Virginia Chapter
11300 Rockville Pike #1005
Rockville, MD 20852
(703) 865.6130 or (877) 807.5271
(703) 865.8873 (fax)
[email protected]

Maryland/Southern Delaware Chapter
1201 South Sharp Street #107
Baltimore, MD 21230
(443) 276.0861 or (800) 618.5583
(443) 276.0865 (fax)
[email protected]

Hang in there, hun. Brighter days are hopefully on the way very soon.
Click to expand...




Thank you for caring, I really appreciate the time you have taken to talk to me and it has helped me to hear that I can cry. Sometimes i just feel that people expect me to never cry or show I'm struggling.
Maybe I'm scared to not be seen as strong because then my suffering would be in vain.
I hope one day there is a cure, maybe when I'm 80 I can enjoy a cheeseburger again :)

My problem is with seeing the Dr earlier (booked in 1st of Aug) is that I have no one to take me, my husband can't get any more time off because of taken me to drivers Ed and my other appointments like my thyroid ultra scan tomorrow.
I wish I could see her tomorrow :(

I feel better after going to drivers Ed said no one ever lol but I do because even though I had pain my mind was taken off it. Then I read what you wrote and I really feel better.

Everyone on this thread is brave and a fighter like you said I just wish people knew half our pain, I wish there was more awareness.

When I pass my test and get my own car things should be easier.

Big big hugs and I truly respect your words of wisdom and appreciate it xxxxx
 
One thing I'm worried about is has anyone been pregnant with Crohns or Celiac? My husband and I are thinking of having kids maybe the end of next year and its something that really has been on my mind. If anyone has I would appriciate like maybe some advice? X
 
I don't have kids and have never been pregnant so I don't know the answer to that, Bluebird. Bozzy has a young daughter so she might be able to help, although I believe she just got home from the hospital so she's probably resting up. You may want to post your question in the Parenting/TTC (trying to conceive) part of the forum, which is here:
http://www.crohnsforum.com/forumdisplay.php?f=45

Generally speaking, what I've heard others say is that if they were in remission when they got pregnant, then they felt okay during their pregnancy (but it's common to flare up after giving birth what with the shift in hormones). If they were flaring or not feeling well prior to getting pregnant, then most have said that they had a pretty rough pregnancy with lots of sickness. Either way, I believe it's highly likely to flare up after giving birth. If you are thinking of getting pregnant, it seems to be like it's best to try to be in remission at the time of conception. So take care of yourself first and foremost, and that'll put you in the best position for yourself and for your potential baby when the time comes. :)
 
Hi everyone the weather is very hot with me here I can't stick it. I used to Love the heat :( I hope you are all doing well, as well as can be. Just wondering does anyone know can you get constipated if u have CD? No scope as of yet seeing surgeon in a week on Monday.
 
Hi Gabi! Yes, you can have constipation with Crohn's. Most have diarrhea, but not all Crohnies do. Some have constipation, some go back and forth between d and c, and I think a lucky few even have normal bowel movements (but other symptoms such as pain). There's really no such thing as a "textbook" case of Crohn's!

The heat bothers me too, particularly when it's hot and humid. It makes my guts cramp up terribly sometimes. Good luck with the surgeon, please keep us posted on how that goes!
 
That's great advice :) thanks.

I've read up about it a little, I'm 26 soon so looking at like maybe end of next year, start of the following it all depends I guess but at least over here if you have insurance you will get good health care and looked after so that's 1 of few reasons I would rather have a baby here then wait till I move home.

I will check that thread out thanks xxx
 
Gabi said:
Hi everyone the weather is very hot with me here I can't stick it. I used to Love the heat :( I hope you are all doing well, as well as can be. Just wondering does anyone know can you get constipated if u have CD? No scope as of yet seeing surgeon in a week on Monday.
Click to expand...

You still living in Irland? My family back in the Uk are not doing well with the heat lol but more so because now it's "too hot" even though two weeks prior they where too cold! hehe

Okay I go between like Cat said, I used to be D like pretty much 90% of the time with 10% maybe being "normal" but now I'm between D and C -___- and my Dr suspects Crohns or Celiac, so I also agree you can get it.

I think people (like my mother -___- ) and especially Drs think their is a strict check list and you must fit exactly for a diagnosis but surely a disease which Drs still don't fully understand or can cure can sometimes vary?
 
Yep bluebird it amazes me how doctors will not go on intuition or have any diagnostic skill, they seem to be there to read reports and not actually listen to what is happening to the patient.

That's why I love rheumatologists, they will listen to you and act on their gut instinct. I would not be nearly as well as I am today had it not being for a rheumatologist taking a chance on steroids for me.

Keep us up to date with the surgeon Gabi :)

I'm totally just enjoying not seeing any doctors just now. I'm reasonably well and want to enjoy it while it lasts without any medical intervention. I'm coming off steroids next week too :)
 
I was diagnosed with Crohns colitis last year. How do they know I don't have Celiac's? I break out in this weird rash there bumps that hurt but they has just liquid in the could be from my vitamin deficiencies dunno but Ive noticed when I eat grains I get a stomach and gas. How do they test? When I was tested in the hospital I had a colonoscopy and a lower Barium GI with Gastroview fluid so they could see my small intestines would they have caught it then? Im a hot mess and just trying to see if there is anything else I need to worry about

Not sure I posted in right place sorry if I didn't
 
cleuger said:
I was diagnosed with Crohns colitis last year. How do they know I don't have Celiac's? I break out in this weird rash there bumps that hurt but they has just liquid in the could be from my vitamin deficiencies dunno but Ive noticed when I eat grains I get a stomach and gas. How do they test? When I was tested in the hospital I had a colonoscopy and a lower Barium GI with Gastroview fluid so they could see my small intestines would they have caught it then? Im a hot mess and just trying to see if there is anything else I need to worry about

Not sure I posted in right place sorry if I didn't
Click to expand...

Well I'm not completely sure but I know what caught my Drs attention and made her consider Celiac was something in my blood but I don't what it was? I know it's not really that helpful but if I where you just voice your opinion. I did to my GP and I will be doing when I see my GI I will be doing the same. It's your body and you could always just say that your worried it could be celiac and how would they go about checking if it wasn't because it would make you feel better to just check it. X
 
Hi Everyone,

Over approximately the past month or so, I have been having chronic night sweats every single night, aside from perhaps maybe three nights.

I have also had a recurrence of the central abdominal pain that I have sufferred from on and off for the past couple of decades, which came along at virtually the same time as the night sweats starting.

Whilst I have not been diagnosed with Crohns, I am pretty sure that I have had it all my life, and that my Dad and Grand-Dad have also had it.

I am a 54 year old female, who lives in New Zealand, and the other "symptoms" I have had that I believe could be associated with Crohns are:-

1. Slow physical and sexual growth as a child and teenager
2. Psoriasis (on my scalp and various parts of my body)
3. Alopecia (fine thin slow growing hair)
4. Predisposition towards getting bronchial type of infections
5. Diagnosed with ADHD when I was in my early 30's
6. Difficulty with "Keeping Fat On My Bones"
7. Anxiety Disorder
8. Fingernail Biter and Weird Growing Toenails
9. Bed-Wetter beyond the age of five

There are perhaps others, however those are the ones that have sprung to mind whilst I am writing this post.

Until today, I had no idea that the night sweats I have occasionally had during the course of my life were perhaps associated with Crohns.

It has only been as a result of having these chronic night sweats almost every single night for at least the past month, that I did some goggling, and realised that the night sweats and sudden rises in my body temperature during the daytime that I have had, might be to do with me experiencing a current Crohns flare up of intestinal inflammation.

The length of time and severity of the abdominal pain and night sweats is starting to really worry me, and if this is a Crohns flare-up, then I am keen to get it under control and into remission as soon as possible, before any further symptoms or complications occur.

I have just started taking Cal.D.Forte and Multi-Vitamins, and I would appreciate any advice you can give me, with regards to dietary foods and medications that you would suggest, so that I can discuss things properly with my GP.

Many Thanks.

From Frankie.
 
perfectly.frank said:
Hi Everyone,

Over approximately the past month or so, I have been having chronic night sweats every single night, aside from perhaps maybe three nights.

I have also had a recurrence of the central abdominal pain that I have sufferred from on and off for the past couple of decades, which came along at virtually the same time as the night sweats starting.

Whilst I have not been diagnosed with Crohns, I am pretty sure that I have had it all my life, and that my Dad and Grand-Dad have also had it.

I am a 54 year old female, who lives in New Zealand, and the other "symptoms" I have had that I believe could be associated with Crohns are:-

1. Slow physical and sexual growth as a child and teenager
2. Psoriasis (on my scalp and various parts of my body)
3. Alopecia (fine thin slow growing hair)
4. Predisposition towards getting bronchial type of infections
5. Diagnosed with ADHD when I was in my early 30's
6. Difficulty with "Keeping Fat On My Bones"
7. Anxiety Disorder
8. Fingernail Biter and Weird Growing Toenails
9. Bed-Wetter beyond the age of five

There are perhaps others, however those are the ones that have sprung to mind whilst I am writing this post.

Until today, I had no idea that the night sweats I have occasionally had during the course of my life were perhaps associated with Crohns.

It has only been as a result of having these chronic night sweats almost every single night for at least the past month, that I did some goggling, and realised that the night sweats and sudden rises in my body temperature during the daytime that I have had, might be to do with me experiencing a current Crohns flare up of intestinal inflammation.

The length of time and severity of the abdominal pain and night sweats is starting to really worry me, and if this is a Crohns flare-up, then I am keen to get it under control and into remission as soon as possible, before any further symptoms or complications occur.

I have just started taking Cal.D.Forte and Multi-Vitamins, and I would appreciate any advice you can give me, with regards to dietary foods and medications that you would suggest, so that I can discuss things properly with my GP.

Many Thanks.

From Frankie.
Click to expand...

Hi Frank, sorry to hear you're not feeling well. The first place you'll probably want to start are some blood tests. Sometimes (but not all the time) ESR and CRP which are markers of inflammation in the blood are raised with an inflammatory condition like crohn's. These are non specific though, and don't say definitely you have crohn's, just that there's inflammation.

You might want to get a faecal calprotectin stool test. If it's high it's a pretty reliable marker there is inflammation somewhere in the GI tract. It's more reliable than blood tests because it measures inflammation directly in the gut whereas blood tests measure it anywhere.

If you get a referral to a GI they'll probably want to first scope you upper and lower if they're investigating you for crohn's. If that's normal they might move onto small intestine investigations like a pillcam or MRI.

That said, there are loads of causes of night sweats so try not to get too bogged down on it being crohn's and keep open minded.

I am no expert in diet and meds for crohn's. When I'm feeling ill I just keep things bland and eat whatever I feel like to make sure I get calories into me.
 

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