I don’t know how old you are but the comment that your dad came to the scope with you suggests that you may be a younger teenager/twenties. Although doctors just diagnose UC or Cohn’s you will see...
Hi turtlepower :-) Yes my daughter developed pancreatitis as a direct result of mesalamine - when she stopped the oral drug her amylase dropped quickly. Then when she came out of hospital we tried...
Not sure if it has anything to do with your issues but my daughter started to get a raised bilirubin after being on 6MP. She took N-acetyl-cysteine as a suppliment and bili dropped back to normal,...
You might want to try saccharomyces boulardi supplements while you treat for Candida. It is a harmless fungus that can out-compete Candida and prevent Candida re-infecting. Sue...
How long since diagnosis? Aza takes 2-3 months to become fully effective. Infliximab is def. worth trying but I am not aware of any other drugs the NHS will try with a major acute flare. If...
HiMy daughter got pancreatitis from mesalazine. The test you need to diagnose this is a raised blood Amylase level. Pancreatitis started as a dull ache just below the ribs from the middle towards her...
I found the following link very helpfull http://naturalmedicinejournal.com/article_content.asp?edition=1§ion=2&article=106 In my daughter's case I follow all guidelines except she doesn't take...
SCD is not easy but it really helps against the gas/speed symptoms of UC. Sue...
My daughter has been on SCD for a year - not because I read a book but because I was looking for recipes that would be interesting with the foods (food diary) that did not cause her problems....
One theory why appendectomy may reduce the chance of getting UC (or improve the chance of remission) is that the appendix can act as a reservoir of bacteria to repopulate the colon after diahorrea...
My daughter got pancreatitis from Mesevant XL. In addition to the pain one of her main symptoms was nausia as soon as she started eating. It was like a switch being flipped - one minute fine the next...
Yes the protein in your urine could be caused by the infection. They should be looking at the urea(BUN) and creatinine concentrations in your blood to check out your baseline renal function. It...
In your position I would not drop to 20mg. If you are getting any improvement I would stick to a well cooked chicken/veg. diet and hold at 40mg. I have read previously somewhere that anything over...
Hi If you have yeast problems you could try a Saccharomyces boulardii probiotic. Basically it is different harmless yeast species that can out-compete candida and so crowd it out. Sue...
Hi Dr G Very excited that you have stepped up with an open mind to offer FT in a controlled medical environment. I live in the UK but would seriously consider bringing my daughter to the US if...
Daughter is currently in symptom free remission with SCD. She tolerates any SCD vegetables, salad, fruits meat and beans OK but cheese causes mucus (confirmed by repeated exclusion and re-challenge)...
Hi Christine Unless UC is severe often the blood tests don't give enough info to be sure of anything. I agree that it is a big step to put a 14 year old through the trauma of a colonoscopy but your...
mom2panda Have you seen this link in the 'curious discovery' thread? http://www.nytimes.com/2011/04/21/science/21gut.html?_r=1&hp It could explain your unsucessful FT - you might want to consider...
My daughter switched from pentasa to mesavantXL and developed pancreatitis. When she stopped taking mesavant it resolved, and when re-challenged her amylase started increasing again - so she cannot...
Agreed with Babe about breaking down IBD data into more relevant groups. CD is very different to UC, and UC has very different progression patterns dependant upon if it is proctitis/left...
A big freezer really helps SCD! Cook in bulk and freeze portions so you can whip things out quickly. The main reason people fall off the diet is because they are hungry with no easy snacks to hand. A...
You might do better using the normal saline ampouls that you can get from the pharmacy - tap water often has very low levels of chlorination added to it to reduce bacteria in the water mains. Sue...
Hi Donna B12 is a water soluble vitamin and so excess is normally passed in urine, but some supplements have massive doses in them which takes time to clear. The timeing of your blood test relative...
If you are not taking strong B12 suppliments then a possible cause is small bowel (bacterial)overgrowth. B12 is mostly absorbed in the later part of the small intestine. B12 can be generated by...
Flamingo I think most doctors hate admitting it - but research clearly supports the idea that if someone develops UC within approx 6 months of stopping smoking, going back to tobacco will speed...
Hi wave sorry to hear you are feeling rough at the moment. I would think the pain in your jaw/temples/eyes and nose bridge are most likely the sinus infection with pain being caused by mucus blocked...
Hi MyUC I'm glad you spotted my post. I would love to see the original article even if it is slightly older. On diagnosis my daughter had an eosinophil count of 1.8x10(power)9 cells/L - we are in the...
Daughter occasionally drinks vodka with fresh apple& raspberry juice - less acidic than orange juice. Sue...
Hi all I noticed in a reply post by MyUC that he gets raised eosinophils when in a flare - which is simmilar to my daughter. I was wondering how many others on the forum get this and if they have...
Turtle it took 10 days for the IV steroids to control my daughters symptoms. I think if the damage has built up over some weeks/months into a massive flare - the steroids need more time to improve...
My daughter is now on SCD and normally has very little gas - but in the past if it increased she was on her way to a flare. She doesn't get the 'dead fishtank' smell - it is more a very strong 'sharp...
Just thought I would mention that with the iron tablets you might find that your stool turns to a much darker blackish colour(so don't be worried) and you may tend towards constipation. It is...
I agree with quincy about talking to the doctor about any yellowing to the whites of your eyes. The top of normal range for bilirubin is about 20 and you cannot notice it in the eyes until it reaches...
If you have a high protein diet and increased muscle mass compared with 'average' that will shift the estimated GFR value. A better indicator of renal function for you may be a 24hour creatinine...
Hi aguywithuc The last test you mentioned (eGFR) is the estimated glomerular filtration rate - which relates to renal(kidney) function. It is a standard calculation based on your age/sex/ethnic...
It seems Aetna will cover one TPMT test because it is classed as medically necessary before starting thiopurine drugs but all other tests mentioned are classified as experimental and therefore not...
Get several spare urine pots and catch some urine each time till you get a brown one. Then take that one in for examination/measurement. Brown can be a sign of myoglobin which is a product of muscle...
Mutaflor 1ml vial suspension - all ok Suspension added to homemade yoghurt - all ok Capsules - flare started within a few days. Sue...
The saline will be at 'normal' concentration - meaning that it is balanced to the salt level of the cells in your body. If you use plain water it would irritate the surface more. It is a bit like...
It's hard in the grip of fear but try to think of all the positives.... Surgery is not experimental - it is frequently done and very successful. Every time we get in a car we can't be sure we will...
I think that for a lot of people with urgency the stress of anticipating going out sets up the need to go. Also for those with less urgency there can be an immediate need to go to the loo when in the...
Often green poo is caused by food colourants, but if you haven't changed your diet it could be biliverdin. That is the first breakdown product of haemoglobin that is normaly rapidly metabolised to...
You might want to check with your doctor, but if you are on pred I would suggest you do take it on the morning of the colonoscopy. Although you normally take it with food, for one day I would take it...
Have you been having regular blood tests? When you start 6mp you need to have your liver function tests and white cell count checked weekly and then fortnightly/monthly to confirm that you are not...
Yes it happens to lots of people. Unless it is making you really uncomfortable maybe cut it down to quarter or half a packet for a while until the gas settles and then slowly increase. Sue...
Hi Laura My daughter was taken off all oral mesalazine when she was hospitalised with pancreatitis. When she came out of hospital she was still getting very bloody diarrhea and she used pentasa...
Mesalazine can cause pancreatitis - I think you will find it as a rare side effect on the drug package insert, and it did cause pancreatitis in my daughter. She had been on Pentasa but then swapped...
Biomedical scientist in the UK - I maintain and drive the analysers that do the blood tests....
Hi the name for what you are feeling is tenesmus and with UC is probably caused by rectal inflamation as mentioned above. Hopefully you can google it and get a few ideas, but it should settle as you...