New to crohns, no suport from doctor

Hello all,

been suffering about 5 yrs from the cramps and running to the loo Alot, always put it down to what i had eaten thought i was lactose intolerant,

finally doctor sent me to hospital but only because i had an abscess just slightly inside my anal passage, and after that burst i insisted she sent me to hospital,

so had my colonoscopy Saturday, and would like help to understand what it all means as none of this has been explained to me by a doctor after the procedure the Dr said most likely crohns, he gave me a sheet of paper told me to take it to my gp and get the meds he had wrote down,

heres what my paper said,

Findings, ibd ? crohns

endoscopic diagnosis, patcy inflamation ? crohns

recomendations , please prescribe Mesalasine 1.6gms BD

COMMENTS, Patchy areas of inflamation with cobble stone appearance in the caecum,transverse and proximal left colon, terminal ileum normal. rectum apears spared . ? crohns i have taken segmental biopsies , gp to please prescribe MESALASINE and return to Dr -----

what exactly does all this mean and the drug he has said my gp to give is not the same name he has said my gp has given me mesalazine (could ut be a spelling error on my paper) 400mg amd i am to take 4 tablets twice a day,
does that sound right to anyone 8 tablets a day and am i to be on these for life? please any help would be so appreciated many thanks,

sorry yes the dr who done the colonoscopy also said i had an ulcer,

Welcome to the forum. I am so sorry you have been told all of this. Was the doctor who did the colonoscopy a GI? Your gp can be helpful but it is very important that you have a GI that knows about Crohns.

Mesalazine (INN, BAN), also known as mesalamine (USAN) or 5-aminosalicylic acid (5-ASA), is an anti-inflammatory drug used to treat inflammatory bowel disease, such as ulcerative colitis[1] and mild-to-moderate Crohn's disease.[2] Mesalazine is a bowel-specific aminosalicylate drug that acts locally in the gut and has its predominant actions there, thereby having few systemic side effects.

I know it is scary and it makes me mad that they didnt give you more helpful information. Sometimes they dont realize how we feel.

It would be good for you to get copies of everything. All of your test results from lab work to colonoscopies.

This forum is going to be a great place for you to find information and we are here to support you.

thanks Julie, i feel a bit lost as our hospital only done the coloscopy saturday and the man who done it was not the referring consultant, i am yet to go back and see him , waiting for that appointment now, i did go to my gp today and he was utterly useless told me nothing and basically made me feel worried as to if he had got the dose of the tablets i am meant to be on right, 8 pills a day seems alot to me , but then i am not one who normally takes any tablets for anything,

My daughter was put on Asacol and mesalamine right away. They added the Prednisone and another drug called Mercaptopurine shortly after; then an antibiotic for 3 months. I am afraid pills and tests become an important part of your life.

The Gi's usually try some of the more mild meds to see if you will respond and then go a bit stronger if needed.

You are on the right track to find out how to take care of your body.
ARe you in pain right now?

One medicine that helped my daughter with pain, bleeding and cramping was a cortifoam. It is like a miracle drug. You will probably need other meds to help with the pain higher up, but this took the pain away overnight. It is a localized foam that contains prednisone. You get the relief without side effects.

not really in pain right now more of a slight dull ache but easily forgettable,

it'll only come on shortly before i have to pass a motion then i feel it worse but will say i have been totally watching my diet carefully since last week ,

i never get bleeding as i have read some do, i generally get really bad cramps and diarrhea after eating , id say certain foods but other than cheese i cant say what foods as even with the cheese sometimes i can eat it and be just fine others im in agony, and its like that with most things, it dont seem to matter what i eat,
if i never ate again my cramps would be fine but of course i cant do that, :ybiggrin:

I hope you are able to see a GI soon. It is important that they get you on all the meds that will stop the Crohns/IBD.

I know there is a lot to take in, but the most important thing to do is get the inflammation under control. It can continue to do damage.

It is most common for the surgeon to get biopsies to confirm Crohns diagnosis. This will help to determine treatment. Do you know if they did?

Bleeding is not as common as the diarrhea is.
The most common type of diet is a low fiber low residue diet. Maybe have a protein shake for one or two meals to lessen the amount of BM's. this gives your digestive tract a rest. No seeds, and no popcorn.

Also, if you dont already know, dont take any ibuprofen, aspirin, or Aleve type products.
They cause major problems in the digestive tract and worsen IBD.

The cobblestone appearance of the mucosa at colonoscopy is characteristic of
Crohn's disease.
Endoscopy is sometimes done by a skilled endoscopist and may or may not be the consultant looking after you.
If you live in the London area and able to travel to St Mark's hospital you will get very good care from gastroenterologists specialising in IBD of which Crohn's is one.
It would be well worth your travelling there.
If you ask your GP for this referral he has to give it to you.
Then the people at St Mark's may be able to steer you to a better GP.
Sadly you have had less than optimal care, information is an integral part of good patient care.(IMHO)
It can be normal practice to start crohn's patients with mesalamine.
Feel better soon
Hugs and best wishes
Trysha

Thank you so much this is the sort of thing i needed to hear , i wish anyone of the doctors iv seen would have told me a little more,
they did take biopsy's i suppose i am now waiting for the results and will here back from the referring physician,

but since i came back from having the colonoscopy i been handed this paper with the details of their find told i also have an ulcer their take this show your gp and get some pills,

my gp was more than useless to say the least, does anyone think the dose is right, the hospital doctor who done the procedure put 1.6gms BD My gp has given me 400mg gastro-resistant tablets i have to take 8 a day:ywow::ywow:

Doctors?! GP and GI's ...surgeons. Wish I could help you, keep your chin up.
At least you got a DX and results(something I was never given).
Would one have to have crohns Dx to be given Mesalasine?
I feel doctors are less than informative. I really had to educate my self.
This is going on my 9 year...
My GP is positive I ave crohns, but says I need a Dx to get the treatment.
Awaiting on call from GI.(How Long?)

well it has taken 5 years for me to get to see a specialist at the hospital for the consultation then another month waiting for the colonoscopy appointment, ,

i have been to my gp many times with bad cramping and he or she (as you never see the same doctor in our practice)
they always fobbed me off with tablets never a mention that it could be anything like crohns or anything other than it must have been something i ate,

and i got sick of going to the gp in the end and i just put it down to lactos but i soon realized it was not just dairy products setting me off it seemed to be everything at times,

maybe if my gp had taken it seriously at the start then i may well not have had the ulcer aswell,

now i am back to waiting for another appointment to see the specialist again to find out the results of the biopsy and the bloods i had done,

forgive me also i am new to all this and i have no idea of all the terms you use , GI DX no idea what these are, :ysmile:

Worriedsoul:
I couldnt remember what the dose was for this medication. one site I looked at said a dose equal to what you are taking. I know it seems like alot, because it is. They are trying to give you the amount needed to stop the Crohns.

If you are concerned you should call the doctors office to confirm. You have every right to know you were given the right dose.

If I am right Dx is a diagnosis and GP is a General Practitioner er Family Doctor. I had no idea what these meant a few months ago. Does any one remember knowing that(Meanings of GP, GI, and DX) before this disease hit them?
My old Gp was a ass and quake, never took me or this seriousy. he said there was nothing wrong with me...That I needed to stop belly aching and go to work. He said he would never sign my medical release or even think about government disability for me.
Last time I visited him he said he remembered nothing about me complaining about the stomach, when that was I was saying for like 9 years.
I know what you are going through, is na right. No one should feel like this for even a year(that is too much).
Only comfort I ave now is antibiotics and pain killers.
I send you all the hugs n prayers I can muster at this time.

Thanks for posting. Sorry to hear about what is going on. Keep your head up. You have to stay strong. You have a new journey in front of you. Advice from someone who has had Crohns since 92, take the medicine that the doctor is telling you to take at the moment. Your body needs it. BUT also do your research, there is a WHOLE WORLD of information waiting for you to discover that can help you take control!

thanks all, i been to see the specilist yesterday and they have said i have ulcerated colitis and i have now been moved to the ibd department and have to attend their tomorrow where they want me to take part in a Trial they are running on live Probiotic, i have searched it and seems it has been quite successful so far feel a bit like a ginny pig at the mo, but i am really hurting today so anything that might help really , http://www.thepharmacyshow.co.uk/la...-its-breakthrough-probiotic-at-pharmacy-show/

think this is what im starting tomorrow http://www.controlled-trials.com/ISRCTN31320381 i will keep you informed, from what i understand its a yoghurt type drink, typical as i hate yoghurt so no doubt will be heaving while trying to drink it, lol just my luck,

The beautiful part of the trial is that the therapy is free, sometimes you are also compensated and you get to help IBD research while also hopefully getting into remission.

Hi there, I am relatively new to this disease too and am discovering that it can be so different from person to person I guess that must be why it is so hard to diagnose for some doctors. I have had 6 Drs who never mentioned Crohns and offered all sorts of ideas, one trip to ER where I was so very very ill I had an out of body experience with the silver thread and all that jazz (and I didnt even believe in it) and they told me I had food poisoning even when I told them I hadnt eaten for 4 days! And it isnt until a very worried Dr researched and called specialists until she found crohns then tested me - even after that out of the last 3 Drs only one knew EVERYTHING and how cool that was! The thing is to keep in communication with sites like this, Ive been just reading for ages and everyone has been so helpful. Ask your Dr loads of questions and if you feel uncomfortable with the level of understanding - find another Dr! Someone here prior to me offered good advice about where to go in London to get great assistance - one thing Ive learned - you must have a GP that is experienced with the disease. Good luck, thinking of you! Jen