Newly diagnosed, all help appreciated!!

[Jay]

newly diagnosed, all help appreciated!!

hi eveyone,

cut a long story short.... been diagnosed with Crohn's after an endoscopy and intestinal mri. was referred after going from size 14 to size 8 in 2 months, constantly being sick and running to the toilet i don't know how many times a day!!

awaiting a colonoscopy( was booked in twice but each time had a reaction to bowel prep and ended up in hospital.)

Seen the consultant last week and was told, 'you have crohn's disease' that was it, no info absolutely nothing. oh and you also have a b12 blood disorder. was given 400mg asacol tabs to take 6 a day and have b12 injection every 3 wks.

AS he was writing the prescription i was reading my notes upside down which read mri scan showed intensive thickening of the walls!! i asked about this and he said oh it normal!!! i was so p***ed off i stormed out as he was next to useless this was after recommending i starve myself for 3 days and take fleet over this amount of time - told me to ask the nurse. Nurse refused to tell any patient to do this which resulted in them having an argument!!!

I have an app with my doc for the b12 injection so am going to tell her the consultant was an idiot and told me nothing!!

Have been on the tablets for 10 days and feel no better, still being sick and running to the toilet! Have been off work for 4 wks and am now off for another 4!!

Sorry for the book, but if anyone can give me any clues as to what to expect or anything at all it would be great!!!

 

[Kev]

Hi Jay. Welcome to the forum. Sorry about your abrupt and apparently inept intro to IBD courtesy of that evidently incompetent & uncaring consult. from the terms used, I hazard a guess your are from the UK???? We have many members here from that part of the world who are better schooled (from their personal experience, none of us are doctors, or at least none are willing to admit to such publicly) to answer your questions about what is typical of the UK health care, practices and procedures, OK? Just in general terms, the 2.4 g of asacol is only intended to reduce inflammation. It will not put you into remission as it were, only reduce some of the inflammation... the internal woes that cause much of the pain and other symptoms. It probably won't affect the number of trips to the bathroom
As for the b12 injections, those are fairly common too. Again, it's not so much for the treatment of IBD, but one of the common related conditions, anemia. As for a colonoscopy, the prep is usually the worst part of it. As for reactions to the prep, I have never experienced that, I'm don't recall anyone discussing this possibility, but IF it were me, then I'd talk about my options with an experienced nurse. Usually they have a better rapport with the patient, and display much more compassion.

As for common advice, there are vastly different schools of thought on the method of treating/dealing with IBD. Some prefer natural or homespun remedies, others prefer treatment solely using the {QUOTE} BEST {UNQUOTE} medical advice. It's pretty much a crap shoot (no pun intended) as this disease affects everyone just a little differently, and what works charms for one is totally useless for another. One of the few things we all seem to semi agree on is to keep a diary or journal of all of your dr/hospital/clinic visits, plus a daily diary of your food intake & reactions to same, plus a list of ALL meds you are on, how you take them, and how they affect you. no matter what your past eating habits, it's time to pay the piper. Research on recommended crohns'/IBD diets, or meet with a nutrition counselour/dietician who preferrably specializes in IBD, and start custom tailoring your diet to suit your disease. You'll probably discover that there are specific trigger foods that worsen your situation, plus there are other foods that have a slower negative or long term impact on your situation. Then there will be foods that you should eat, even if the list doesn't appeal to you. Try to avoid any stressors in your life, minimize same, and try to get plenty of rest. When you can, work in some exercise, and consider adding vitamins, supplements, probiotics and enzymes (based on the nutritionists recommendations). Take a cohort or confident with you to your appointments, and be sure to take notes and ask questions. don't take no for an answer. You're the one who has to take controll in the fight of this disease, the dr's, consults, etc., are just there to answer your questions, provide alternatives, and give opinions. They are not in charge, in essence, they are either your employee or assistant. I'm sure i've left out a lot of good stuff, and pretty sure I've snowed you under with a lot of extraneous info... It can be a pretty steep learning curve at times, but you have the rest of your life to get up to speed. and don't worry about the 'book' as you can see, no one goes on longer than I do. and once again, welcome. Ok?

 

[merrywidow]

hello jay, welcome to my world!!!! it took me over 4 years to get back to near normal, sorry that may not be what you wish to here but the truth is what is needed. i had crohns (still have occasional flare ups) but in the end i had a ileostomy pouch, the thought of it is worse than the actul bag.
i can go out shopping without thinking "wheres the nearest loo, just in case?" i can eat normal food again without thinking, "is this gonna upset my tum?" and the best thing that has happen to me is , that when live returned to normal i got my HGV licence and now drive huge lorrys for a living, this was always a childhood dream of mine. but wasnt possible when you have active crohns,. i hope things settle for you soon, but bear my comments in mind, regards sharon x

 

[Jay]

hi guys, thanks for your help. its kind of overwhelming when you are just told 'you have crohn's disease'

and yes kev, from the uK!

 

[merrywidow]

hi jay, where abouts in england do you live? i am in eastbourne on the "sunny" south coast. things do get easier, but it does take time and sometimes its more luck than jugdment, also try and suss out what food gives you grief, this is a bit tricky but it does help. i started of with white bread (no crusts) jelly (any flavour) and white fish (boiled) and then started to introduce new foods and waited for the results!!!! hope your well regarsd sharon

 

[Jay]

hi sharon,

i'm in scotland (glasgow!)

on the food thing, i'm keeping a kind of diary and going from there - is it usual for certain types of choc to make you sick/in pain or as usual is everyone different! lol

something else, i've been off work for 5 wks because i literally can't leave the house, were you off at first and how long for? x

 

[Mitchy]

Crohns

Hi there Jay, I'm from Edinburgh, and like you am finding my diagnosis very overwhelming. I was diagnosed in June, and have been going through hell ever since. My last investigation was a laparoscopy and am due to have a capsule endoscopy in the near future!!! God I hate this, and wish only for it to go back from where it came from, its not wanted!!!!

 

[Kev]

Jay.. Milk chocolate, or dark chocolate? Milk products, even hidden in chocolate, has an impact on lots of folks. Try very tiny amounts of dark, unsweetened chocolate, and see how you make out. If even it bothers you, my sympathies. Ever try carob?

 

[carley]

Hi
I was also just diagnosed with Crohn's after 2 years of extreme pain and every doctor telling me it was psycological, but eventually when they found out they took it really seriously, I'm shocked at how your doctor treated you, the hospital i was at ordered me a special dietician to come talk to me and a gastrologist, and now i have follow up appointments with dieticians and gastrologists, you must do these, i think its very important.

 

[merrywidow]

most dairy products upset me. and during a flare up i stay clear of any fatty foods and tend to stick to white bread and jelly. very bland and boring but i find it gets me back to "normal" quicker. fizzy drinks are aslo bad, excess gas is not good when your tum is sore!!!!! can i send you a private message? regarsd sahron