CAN YOU HELP ME OR EVEN JUST UNDERSTAND WHAT IM GOING THROUGH? PLEASE READ

Welcome to Healing Well,

First of all, this is an excellent forum, and you'll get alot of information here that will help you deal with this disease.

You will be able to get the disease under control, it's just a matter of finding the right treatment plan. When you were taking prednisone, it should have improved your condition. Most usually get oral Prednisone, starting at about 40mgs. per day, on a descending dosage weekly.

The addition of Azathioprine, is a good idea, but it can take up to 6 months to reach the effective level, and you have to be tested for metabolites to see if it's at it's peek therapeautic level.

Starting you off with mesalamine, I'm guessing Pentasa, is not an uncommon approach, but many feel that this is a useless drug to treat Crohn's now. You'll get conflicting points of view on that though.

The recommendation to go to Remicade, is likely a very good one. It's pretty much the state of the art treatment for Crohn's now. There's differing opinions on whether to start an advanced drug like this early on, but the big thing to consider is, preventing the disease from causing irreversible damage.

I would recommend a couple of things. Gastroenterologists, are just like any other walk of life. You can get some very good ones, and unfortunately some very bad ones. You need to be seeing a GI that you have the utmost confidence in.

Other than that, before starting Remicade, maybe suggest more diagnostics. An MRE would be good. Once you get a concise up to date look at your status, it will help you make the decision on whether to go to Remicade.

Good Luck, and keep posting your updates.

Tom

Bit surprised the Prednisolone didn't do anything. Also 32mg sounds like a weird dose. Not an impossible one (there are 1mg, 2.5mg and 5mg tablets), but not exactly normal - 40mg is a usual starting dose.

I'm going to be blunt: mesalazine is frankly useless for severe and aggressive Crohn's and, arguably, all Crohn's. I don't know why doctors even waste their time with that anymore; lack of alternatives, I suppose. And the placebo effect.

Get onto the Infliximab as fast as possible: it's easily the most effective Crohn's med currently available. That said, a minority of patients do fail it. But it works for about 85% of patients, at least according to my gastro consultant. It works a lot faster than the azathioprine, but if it hasn't made any difference by the 3rd infusion, it is unlikely to make any difference after that. I hope, though, that it kicks in for you.

Failing that, if you have to have surgery, it is not necessarily a disaster. It is not a cure for Crohn's, but it can lead to many years of remission. It really depends on how lucky you are. A small minority do need operation after operation, but that is rare.

Personally, I don't think the NHS (forgive me for assuming you are from the UK, but you sound like you are) is well-geared towards dealing with chronic conditions. It's great at dealing with acute emergencies, but is too slow, inefficient, and impersonal at dealing with a chronic, non-life-threatening but still often devastating condition like Crohn's. That said, some hospitals and some gastro docs are vastly better than others. You are entitled by law to have treatment at any NHS hospital, so feel free to get a referral to another hospital. I went through 3 hospitals (albeit over 10 years) before I finally found one that I was satisfied with: the previous 3 were crap. You can also request to see the consultant at every appointment instead of the IBD nurse. For somebody with complex and severe disease that is difficult to manage, I think they should do that.

Hopefully once you get your disease under control, you will feel better and can attend to your family. I have been through the mill in the last few years. Finally had a colectomy and a permanent ileostomy this year. Didn't want the bag, but was sick of Crohn's ruling my life. It does take a while to get over the trauma of having been sick and in pain for a long time, so I think seeing a psychologist to talk about it is a good idea. Good luck :p

PS: It wouldn't be a bad idea to get tested for iron and B12-deficiency, as anaemia can make you feel terribly grotty and fatigued. In general eat as healthily as you can and take a multi-vitamin supplement if you don't think you are getting enough nutrients. Something as simple as lack of sleep and proper nourishment can make you feel like the living dead - speaking from experience.

thank you all for what you have written im glad to see i am not alone in this i nkow its not nice in one way to say it but im glad to have spmeone out there who understands it, as one of you mentioned yas i am from the uk but i live in cyprus, and i have all the faith in my heart in my gastroenterologist as she is the only one who is willing to help me back in to remmission, my internal medicine doc she did not wont to know and kept saying i was over reacting until i forced for a ct in dec2012 when they found the crohns in my large and small bowel, its just a shame it is now in my stomach, yes i am definatley pushing quickly to get on to the infliximab i am going for all the blood tests tomorrow and the x rays and skin test for tb, when they all come back negative i will have my vaccines against everything and should be started soon after, heres hoping by the middle of may i will be on it, and no if it turns out i need the op i am prepared for it as i know that would then be the only way to feel releif from this crap disease which affects us all, and just to have any releif just to be able to play and cuddle my son the way he wants will be great for me and definatley for him, we need some mummy and son time thats for sure with out being interupted, and ofcourse i will keep you all posted on any updates i have. thank you and keep fighting your own battles, we can do it together with someone who understands, so thank you again hu1988

I don`t know how much help this will be but I`ve been through the wash machine and ringer that is crohn`s, at least they found YOUR`S,, sooner than mine.. every doc needs to realize you don`t goto the ER, for a simple gut ache.. I would ask how are your bowel movements -- fluffy looking, or are you constipated, or diahreia if the latter? I take a pure fiber laxetive just to keep enough fluids in the bowel, no added surgar or sugar subbsitute.... surgar can aggrivate the bowel..I`m on remicade now but already had 3 resection`s,, most likely haveing and ostomy next month.. I`ve had it with the no life- and everything has to revolve around my pain and other symtoms, you could cut out fried foods, and things with gravies, sausces, ECT---.to see if that helps in the mean time, sounds like they need to look for possible fistula`s wear the bowels grow to another part of the bowel, and creates a small passage way, I had lot`s of those and they can make you feel like your being drained of all your energy..and as said before take a vitamin supplement.. use the search engine on this site, we as crohnie`s I think some times know more than some dr.`s.. hope things go your way soon,

PLEASE try the specific carbohydrate diet. Doctors do not focus first on diet but don't minimize its importance, modern western medicine not good at all in preventative health. I am not a nut who does not believe in doctors or pharmaceuticals. I have a master's degree in chemistry and I understand the absolute necessity for drug treatments for many conditions, but I strongly believe in first and foremost providing the conditions for our bodies' natural processes to function optimally.

Specific Carbohydrate Diet (SCD)
http://www.nomorecrohns.com/what-is-the-specific-carbohydrate-diet.html

The website above claims that the elimination of certain carbs starves micro-organisms. I don't know for sure, but I don't know why bacteria wouldn't consume the allowed carbs. There are other credible, scientifically sound theories as to why this diet is essential.

When I first started a diet with only fruit and veggie type carbs, my whole system felt less swollen within a week. I feel bloating and discomfort from one small serving of the wrong carb, sometimes within a few bites.I tried the diet initially because a friend with very severe arthritis (took remicade, humira, all of the dangerous immunosuppressant drugs, you name it, and still had visible horrible pain slowly walking across the room). She did so at the advice of her son, a doctor who, after an extensive literature search, informed her that many researchers believe that gluten sensitivity (not detectable allergy yet an immune system irritant) and insulin spikes are the main culprit in all modern inflammatory diseases, which became epidemic when people began consuming wheat products. Within four weeks she was off the dangerous immunosuppressant drugs and had reduced all drugs to minimal levels, while her inflammation markers were lower than ever (to her doctor's shock and disbelief), including when she was on the most intense drug treament. When she told me how well it was going, she also said that that day she managed to walk four blocks. Today she still has daily pain, but it is not debilitating like it was and she is not taking the risky immunosuppressant drugs.

I also know someone with Lupus (also an inflammatory auto-immune disease) who stopped eating gluten (which includes all refined carb products and all wheat) and benefited substantially from symptom reduction.

Our bodies evolved and our biochemical processes became optimized for consumption of whole foods- hunter and gatherer foods, meat, veggies, fruit, berries- over hundreds of thousands of years, and the relatively very recent introduction of a new diet throws off the delicate balance of many people's biochemistry, which runs everything in our bodies, it all comes down to the chemistry involved when our bodies break down the food and process the products of food breakdown. I read a book written by a doctor named Floyd Chilton (Full Professor in the Department of Physiology and Pharmacology at Wake Forest University, Director of the Wake Forest and Brigham and Women's Center for Botanical Lipids at Wake Forest University Health Sciences, founder of the Program in Molecular Medicine at Wake Forest University Health Sciences) called The War Within. This book hypothesises that too much insulin (which is spiked by our refined carb diet) is responsible for inflammatory diseases. As a chemist with Crohns, I was fascinated by the biochemical mechanisms of inflammation, in which insulin plays a major role in signalling immune responses that cause inflammation.

Please try asap and let me know how it goes.

unfortunately to what you are saying for me to go on a all carb diet, of fruits and veg etc, i can not eat any fruit or veg with me being in crippling pain a hour or so after, my diet is restricted to just pasta, rice and chicken and fish for protein, if i want fruit i have to eat canned fruits, as all the natural fruits give me such problems always, i have just about tried all different forms of diet to get it under control with no joy, at one point i was so bad i ate only soup for a period of 2 weeks,and since then my diet does not involve much else except pasta for lunch and dinner every day, i have tried slowly introducing familiar foods back in to my diet just to have the same reaction, but thank you any way that info will still come in handy as my mother has osteoporosis and diverticulitis, so i think it will benefit her thank you very much, hu1988

Hello, I wrote the diet info that you dismissed without reading carefully or looking at the website. This is what I mean about people not taking diet as seriously as a drug. It is absolutely NOT not an all carb diet, it is meat, fish, nuts, and only certain types of carbs, very few carbs. Vegetables are often cooked into soups, no one suggested eating raw roughage. As I said, a diet similar to the "caveman diet". I cannot eat white pasta , should never eat pasta, r I am doubled over in pain for hours. You said that you tried eating only soup for two weeks but my guess is that it was full of pasta. My friend's son was in the hospital for three weeks on the verge of resection and avoided it with this diet and within two months was able to work for the first time in a very long time. Pay attention to how many people on this forum have found some improvement with this diet. You may very well need remicade, but you are willing to try a dangerous drug yet but not willing to cut out very processed food products.... Thas serious problem with our culture...

I'll second that (Zaneref)
SCD and also saccharomyces boulardii (Florastor or Jarrow).