Hi Folks - it's been a while since I've been here, but luckily I'm not back due to a flare :) I finally started Infliximab/Remicade a few months ago which has been a lifesaver for me. It does give me...
Gosh, that sounds awful for you. I can only take liquids at room-temperature and in small sips - but that is quite simple to do and it doesn't hurt when it's done like that. I'm suprised that the...
Hi! I thought I'd throw a couple of euros in here ;) Has your GI told you whether you have any upper GI scarring and to what extent? If you don't have an obstruction or scarring, then remission...
I don't know if it's related to your incident at all, but I find that when I'm low on b12 my hair goes really dry and brittle? Also as someone mentioned above, malnourishment or trauma is a definate...
Seconding obstruction pain here. Although I truly hate the constant fatigue - it can really wear you down emotionally too....
It could be that the lining of your womb has built up over the months you've gone without menstruating, which is resulting in a heavy period now. I doubt it's something to be too worried about, but...
I need to sleep a lot - although it's much worse when flaring. In remission I need at least 8 hours generally, when flaring it can be 12+ hours with afternoon siestas also par for the course. I...
Prior to diagnosis I was plagued by mouth ulcers! They seem to disappear when I take steroids and only begin to reoccur in conjunction with a flare. You mention anal fissures - have you been having...
The pharmacist was definately overreacting - a lot of people take azathioprine for a whole range of auto-immune diseases without major problems (and it's certainly a lot safer than drugs like...
Just thought I'd dash a quick note here, don't know if I'm rehashing old material though ;) I recently bought a book called Life Disrupted by Laurie Edwards which discusses facets of the chronic...
After being on the elemental diet for a bit and feeling better, you might start to dream of solid foods. However it's 'phantom' hunger - purely psychological, and you'll probably be getting more...
Dieticians can be terrible, especially if they're not specialised in IBD. Once when I was hospitalised in England I had a ward dietician who kept telling me the reason I felt sick was because I...
Is it possible to get an emergency referral to a dietician to get a supply of elemental diet? I would have thought your doctor would have at least arranged an enterel feed as a matter of urgency...
I've primarily had Elemental 028 as NG tubing feed but my experiences of it have been pretty good so I think there's every chance it should bring you some relief. In regards to websites with info on...
Elemental isn't bad tasting per se - just takes a little getting used to flavour-wise. Personally I find elemental feeds such a relief to my system that I would take them even if they tasted foul...
I don't suppose you suffer from regular vomiting or GERD/acid reflux by any chance? That's the most common cause of damage to the mucal lining of your esophagus, particularly if you don't have a...
Lwaite, I just want to say that your post really touched me. It was incredibly human and honest - and I'm really pleased that you shared it. It's sometimes hard to remember that chronic illnesses...
Raspberries? Gumby you're so lucky - I dream of raspberries haha! But I totally agree - buffets are a no no! All IBD patients should be very careful about the risks of food poisoning and avoid...
Hi Mary! First off I must emphasise that I'm no expert - I think it varies very much on a case by case basis, and I can only tell you my experiences in regards to flare-remission cycles. It sounds...
I'm really slow at recovery whether it's from surgery, illness or physical injuries...even from cuts. Not to mention after blood tests I bruise like a bona fide drug addict. When it comes to being...
I'm glad to hear I'm not the only one feeling the cold! I guess I'll see if it's the Entocort once I manage to taper off(but I'd definately choose being chilly on Entocort over the many side-effects...
I'm sorry you had what sounds like a truly ghastly experience. Take care of yourself sweetie and make sure to recuperate fully! My thoughts are with you and I'm hoping for some good remission days to...
Anyone else experiencing this? These past few months I've found myself to be always so terribly cold despite the warm summer temperatures! I'm currently approaching my 5th month of Entocort for what...
It's wonderful to see you back - make sure to take it easy and be good to yourself! My thoughts and prayers (and internet hugs) are with you in your recovery :)...
For me it took just under 2 weeks for the Entocort to kick in properly - I was almost convinced it wasn't going to work at all...and then suddenly I started feeling better. Don't be too worried if it...
Hi! I don't claim to be an expert, but I've certain got some experience with nausea...and I'm talking industrial strength nausea. Personally when it comes to anti-emetics I currently use a combo of...
Your GP or GI can prescribe Modulen for you. Alternatively you could get Ensure? It's much cheaper to get Ensure on prescription from your GP, but I believe it can also be bought directly over the...
I believe that this sort of constipation diarrhea cycle is quite common with chronic constipation. In the case of long bouts of constipation, new solid wastes work past the constipation obstruction...
Lasardo, if you can tolerate dairy - have you tried avacado shakes? Avacado flesh, milk, condensed milk and ice. Full of healthy (and some not so healthy) fats. Creamy and sweet, it's not too strong...
Sounds like an allergic response of some kind. I had a peek at my paperwork and there's certainly no reference to such side effects. Definately contact a medical professional just to check. What...
I also get the extremely dry skin from meds. My solution tends to be drinking lots and lots of water and religiously applying Aveeno for the body and Oskia products for the face. Repeat throughout...
Just a little background first. Recently I've managed to get a bad flare under control. As a result symptoms have lessened and I've been feeling quite a bit better than I have been for several...
From what I know mucus in bowel movements is a relatively common symptom of IBS. On the M/C note - I hear you. I definately used to find my gastrointestinal system played up in the week preceeding it...
As someone just finishing her university course, I can say that smoothies are a quick way of getting in something healthy in a hurry without so many fibre concerns. Generally however, it's a case of...
I agree with the above posters, but I understand that waiting for diagnosis can be a very scary time. How did things go Daunting?...
My heart goes out to you - and I agree NG tubes are horrid if you're conscious! I'll be keeping you in my thoughts and hoping for the best!...
My 'main' Crohn's is classified as gastroduodenal and occurs in the stomach, duodenum and esophagus - but I am also prone to significant amounts of inflammation in my jejunum, sometimes concurrently....
Pred makes me so wired at times - it's like a shaky caffeine overdose! I usually taper down from either 60mg or 40mg in 5mg doses and I find that very effective! I've got to say I love it when the...
It's not that surprising really. I've always been a little leary of what goes into toiletries when I think about how effective transdermal medications can be. As a result I try to use more natural...
Good luck! Once you know what's going on you're half way to feeling better already!...
Been back on simple solid food for about a week and have been feeling okay, but unfortunately ended up spending all of yesterday vomiting (plus a few unexpected losses of bowel control - oops)....
Hoping for some reassurance here! Usually my GI prescribes me Prednisone tapers for flares, but this latest flare hasn't been severe so we thought it would be a good time to try Entocort alongisde my...
I'm always thirsty too, when I go home to visit my parents the housekeeper always worries that I'm becoming diabetic because that's one of the symptoms. I'm always drinking water, and I can't eat...
I think having a list of questions is a great thing to do! Also prednisone can be great. If it's effective for you and you have IBD then you just need to be on it long enough to fully calm down your...
Rice is always the first solid food I can stand - very simple and soft. Have you tried adding some drinks like Ensure? Whilst I don't advocate turning to entirely liquid nutrition without the...
Although to be fair a fever doesn't rule out a flare. I'll sometimes get fevers and night sweats during a flare. As for the gurgling sounds, I totally hear you on that one!...
I'm surprised that the results are likely to take a while. The last time I had a capsule endoscopy I had a follow up appointment 4 days later to discuss the results! It certainly wouldn't hurt to try...
NY Veggie is right, my Entocort instructions say that licorice is a definate no go, the two interact and can intensify side-effects as well as making the medication slower to leave your system....
I know that during the period before I was diagnosed there was talk of me having 'cyclic vomiting syndrome'. Personally I'm not convinced that CVS sufferers don't actually have some form of...
This sounds like a horrible situation for you - and something you should really not have to worry about whilst trying to cope with illness. I really hope that one of the suggestions above will...