Hi, Don't usually post here anymore but I do look in from time to time :) I don't know why it is added but-my son was on Pentasa and symptoms didn't improve so they added in Azathioprine with a huge...
Dingleeire- Good to hear that 6mp is working for your son, I hope that he gets many more years relief with it. When you read about side affects with drugs, they half scare you to death but that...
it has been a while and I thought I would come by and say hello :) Those that have been about for a while will know that my son was diagnosed with Crohn's when he was 16 1/2 years old. It took a...
someone would make the throw away comment of "You don't have Crohn's" and always told myself that the day that happened I would withdraw from here and that day has come. I am not angry or upset, it...
NCoT You are absolutely right, I don't have crohn's but I do live through it with my son. However I do have an absolute idea what the elemental diet is like I have taken them to show son solidarity...
Hello Mathias, Can I ask how many Pentasa you were taking a day? It could be that still taking them but in a lower dose may help. DS was taking them(in themself not enough to stop his symptoms so was...
Sorry no useful advice for you, just want to say that I find it horrifying that you can be left in that sort of position. People moan about the National Health Service here in the UK but generally...
Thanks :D Should hear any day now. Whatever your mum's diagnosis you are going to worry which is perfectly normal, what you have to keep in focus is that a diagnosis in itself is not the be all and...
Although they are two very different things symptoms can be similar(ds has crohn's, neighbour has bowel cancer) Passing of blood, pain, inability to eat, constipation/diahorrea, inability to put on...
I know it's tough both for you and your parents, Maybe she can't totally relate but I would imagine that she too is going through lots of emotions right now. A diagnosis crohn's is quite a biggie no...
Hi Micah, I am assuming you are in US? If this is the case then you really need to speak to your Primary care giver(I think that is what you call them) or your GI. I am in UK and we do things...
Yes he went into/and is in remission :) For some, an initial drug is tried but it is not substantially effective, it may then be decided to add steroids to try and help for a relatively short time or...
Hi Micah, If you aren't in remission it is going to be quite tough to gain weight and also it is not going to happen quickly either. Are you currently on any medication and how have you taken the...
OK, I am going to chip in here but quite understand if I get told to wind my neck in because I don't have a clue!! Firstly it is ds whith Crohn's and he suffered with being severly underweight(now in...
Have been doing quite a bit of reading on intolerance/allergies and generally yes allergies come on soon after being exposed to the allergen however I have found that I have a reaction about 6 hours...
Hi, I personally thnk it is the steroids. His skin was really so bad but I assumed(wrongly) that once off the steroids it would go away, only it didn't! It was only when we had an appointment with an...
My son did (is a teenager though) What set it off for him big time was steroids, even after he had tapered off them the acne persisted, from his head down to his legs he was quite literally plastered....
Sorry to hear this. I guess it is always a fear at the back of your mind. Fingers crossed for her....
I am in agreement with Levi :)...
Mommyof2little1s-Happy Birthday for tomorrow :D...
Morning :) I am comfortable with you using my post (thank you for asking) The Dr is an a** on things HE considers trivial (not first time we have encountered problems with him) but now he...
Of course I can drop you an email ..........thanks from me too Roni :)...
Hi Emily, Just thought I would briefly share 'our' experience. Ds was diagnosed(finally) approx 2 1/2 years ago at the age of 16. I knew that something was wrong with him for several years and we...
Hmm, good question :) Wholemeal pasta/rice and low GI bread(I know the bread intake needs to drop a bit more) Milk substitute(soya/rice/almond) only taken in tea or with oats to make a porridge....
http://www.natureshealthypeople.com/natures_sunshine_herbs_products/acne_remedy.html That is a nature's Sunshime acne product recc to us by someone else whose dd(with crohn's) had acne, not tried by...
Hi Jodi, LOL I know it doesn't guarantee weight loss and that was not my reason for doing it but I would have thought that giving up dairy(block of cheese a week-well shared with the dog :) ) meat...
Haven't seen you around for a while, maybe you are just having and enjoying some 'me' time, hope this is the case and it is not because this nasty disease has 'floored' you for a while....
Glad a vegi type diet helped you. However for some with crohn's they really can't tolerate fruit and/or veg that well or have been advised to eat these things minimally. I don't have crohn's(ds does)...
HI, ds was on entocort(not pred) but the same thing happened to him, only he was plastered in it and I had hoped that it would clear up(given a few weeks coming off the drug) but it didn't. Lots of...
I don't recall seeing this being posted before and it is always interesting to see what is being explored. Must say though that it appears to be similar to the work that Prof John Hermon Taylor is...
Mononucleosis/kissing disease/Glandular fever all the same thing I believe, and DS no never to that one....
Hi, You must be an awfully strong person to have been dealt so much and I can't begin to imagine what you are going through/feeling. In answer to your question, yes there are tiny risks of developing...
Well said Gumby Evening NCoT, must have been posting the same sort of time:)...
Wrong DNA/dumb immune systems in the main but I think that something(chemical/bacteria or whatever)sets it off and I think it may be something different in each person. Although ds is the only one in...
Is this the link? https://www.mja.com.au/journal/2008/189/8/hepatosplenic-t-cell-lymphoma-following-infliximab-therapy-crohn-s-disease Sorry to hear that you are worried re your lab results,...
Kazbern, I wouldn't base any decisions on the story I told either and I certainly wouldn't post his 'treatment' plan simply because I do not know how severe his condition was(only by what he has...
LuckyLindy, I don't have crohn's,(ds does) and he doesn't really eat/drink dairy(once in a blue moon) so whether benefit is felt in regards to Crohn's, I can't say. from my own point of view...
LOL NCoT, I was similar (18 months to be precise)I nearly overdosed every night on anti-histamine tablets. I thought it was an allergic reation but couldn't pin point the cause, changed washing...
Evening all :) I agree that anyone should not constantly post in each and every thread although so saying there are many that equally have a signature with what drugs they are on-so really it should...
Hi Geoff, No he wasn't hospitalised, he has also run a temp of 40.2/40.3 and wasn't hospitalised then either, although they did say if his temp didn't go down he would be admitted(different occasions...
Son had one of 179 but for the life of me I can't remember the whys and where fors (and it happened in the last two years so shame on me!)...
I find it strange to imagine drugs being advertised on TV. Here in the UK we get the like of cough/cold remedies being advertised but not what I would call 'hard core' drugs...
Hi Jess, After diagnosis it all seems a bit scary!! You think your life is over. Some people do have severe symptoms and find themselves fairly incapacitated, however many more with the correct...
As well as Prof Hermon Taylor what about looking into research that was going on at Nottingham(Queens?) Hospital. It involved chemo and bone marrow(I think). One of our members went on it and became...
Morning NCoT Sorry that you are having a tough time of it. I personally know of 4 people that have a bag the youngest was 21 when he had his(now in late twenties(?)) Another had theirs about two...
Hi Soph,Sorry you have found yourself here and although there is never a good time to get diagnosed with this disease I think it is particularly difficult for those in their mid-teens. As you mention...
Hi Martin, Like I said I don't know anything about seton stitches but I don't think I would go snipping at them yet though!! If you don't get any joy with new Dr try and go via Patient's...
HI,DS was on Pentasa and then went onto Budesonide. He was on a full dose and then tapered off over some 3 months (or so). In his case it didn't work (did cause severe acne though!) and shortly after...
Ditto what everyone else has said. the Dr sounds like a real sweetie/godsend! You are handling this great and keep doing what you are doing, as said before you know your son best and don't let anyone...
Sounds like you are having a rough time :( It appears that you have a specialist who is not prepared to look at the 'bigger' health picture and consider all your son's problems. He really sounds...