Intro But Help Needed Please

[RYANP]

Hi Im 26 and have been diagnoesed with Crohns last week - I had a barium xray and camera, and ther results according to the doctor were not totally conclusive but in his opinion I prob have crohns. I have Ankylosing Spondylitis if any of you have heard of it (and apparently crohns and As are closely related)? Anyway as far as the crohns go, I have suffered with diarrhea for years but i always thought it was the meds i was taking for the AS, i also struggle to put on any weight - im 6 ft ish and weight only 11 stone at best best. I do have a kind of constant pain in my right side which ive had now for about 3 months, normally only get pains when i have diorrhea bad. Im also suffering for depression at the monment with the AS and this new diagnosis getting on top of me. Another issue I have is that i have got a real sore throat and bad taste in my mouth constantly and my tongue has a yellowing horrible looking coating on it - i would really like to know if this is chrohns related cos it is really worrying me and the docs dont seem to have a clue!(any help with this would be much appreciated)
The doc has given me Pentasa to take morn and night which does ease the pain a bit and make my stools more solid, but other than that he said see you in six months. I asked him about diet and he said i dont ell my patients to follow any diet but if you find something upsets you - avoid it and thats all the info i have re my new diagnosis.
Ive been of work now for over six months with my AS, but should be going onto anti TNF med very soon so should be back in work in a few months - is anyone elses work affected?
thanks (i think thats it for now - prob more questions to come - lol)
Ryan

 

[soupdragon69]

Hi Ryan,

Welcome to the forum! Glad you found us and looking forward to your input and questions too.

AS and Crohns can be linked from the research I have seen previously. Many of us on here have more than Crohns as you will see as you read the threads. Have a look at the blues thread started by Dingbat in the Support Section and you will also find those of us that have had problems with work too.

It can take time for things to settle down and the right sided pain you describe is one that many of us experience. If you dont feel supported by your Gastro Consultant ask to see someone else.

You dont say whether you are from the UK, USA or elsewhere. There is a Crohns and Colitis Association called NACC here in the UK and one in the US too am sure some of the guys will tell you the name of it so you can google it. Other countries have their sites/organisations too but at least these will both give you tons more info about Crohns and might help you to get your head round it a bit more. A fair few of us are on anti TNF therapy for our Crohns even though yours sounds more for your AS you might find it helps on the Crohns front too. Keep it in mind eh?

Keep asking. We do understand. Hope you start to feel better soon. Welcome again!

 

[D Bergy]

I would guess that the coating on the tongue is a bacterial overgrowth of some kind.
The most likely suspect is yeast, since it is most common. Thrush comes to mind.

If you get some Oil of Oregano mix it with water and swish it around your mouth a few times a day it will clear out your mouth, but I doubt it ends there.

Have you been on antibiotics recently?

Dan

 

[Methofelis]

Welcome to the forum. Hope you can find some answers here.

I have also had trouble with the tongue coating, or "hairy tongue," but that usually comes up if I'm on broad-spectrum antibiotics or if my kidneys are giving me trouble.

As far as I can tell, the best to get rid of it is to find the cause and also to use a tongue scraper.

 

[Guest]

hi ryan and welcome

i was going to suggest the tongue condition sounds like thrush, but dan beat me to it lol.

the pain on your lower right side - thats exactly where i had my crohns pain the first time around, and i think its quite a common site for bowel troubles.

you mention your doctor - is this your general practitioner or a GI consultant? if its the former, i'd recommend getting on the books of a proper gastro consultant asap, as they know more about the symptoms and treatment of crohns than a gp ever could.

i do know what AS is, i know someone who suffers from this, but she has no crohns connection. i didnt actually realise there was one, but it makes sense as joints are often affected with crohns.

anyway, welcome to the forum - i hope you find it as helpful and supportive as i have

 

[D Bergy]

Just for accuracy, I should have said Fungal over growth, not bacterial.

Dan

 

[BWS1982]

I'm going to assume you're from a part of the UK due to your use of the measuring system of "stones"....

Welcome, nice to meet you, hope all's well with the new diagnosis, I was a mess myself after initially diagnosed, and I don't mean just physically....

It sounds like Thrush, it's so disgusting too I know, I had it and am just getting over it (still lingers there once in a while)...Nystatin was needed to make it subside...tell the doc it's basically a yeast infection in the mouth.

 

[Rosemarie]

Hello Ryan, Welcome to the club =)
Well... I cant help you much with the Ankylosing Spondylitis issue... but as I was reading your post I found myself wondering about this doctor your seeing. It seems very ODD to me that a doc would just slap you with a vague Crohn's diagnosis and then say "see you in 6 months". If I were in this situation (which I have been, almost the SAME situation when I was diagnosed) I would start looking for a different doctor. Someone who will take the time to educate you about what is happening to your body and how you could ease the pain. Someone who will listen to your (emotional) concerns and possibly help you find someone else who is qualified to help you learn to cope with it. I remember vividly how I felt when I first found out I had Crohn's. My doc was just as impersonal and uncaring. Finding another doc, one who cared enough to answer my questions and show genuine concern made a world of difference in my treatment. A doctor who is TRUELY qualified to treat patients like us needs to understand ALL the aspects of the disease and be compassionate towards new patients. Obviously I dont know your Doc personally, but from the sound of things, you should think about how effectively this person can treat you.

 

[Kev]

Hey Ryan... Welcome to the forum. Think you'll find this a great help. I'd also echo what Soupdragon, Dingbat N Rosemarie said about your GI consult. I don't think a GI's 'laidback' approach is perhaps your best bet longterm in dealing with a 'possible' diagnosis. Esp. considering the SA adding to the mix. Think perhaps looking for a consult WHO will firm up the diagnosis AND go over your options, help you plan on dealing with this, etc., is a good investment of your time... And, hey, it might not be Crohns. Even if you see someone else IF just for a 2nd opinion, I don't see how you could go wrong. I don't know as to whether getting referred to a nutrition counselor/dietician is possible, but if it is, I personally found it to be a vast help. some docs' feel diet is important; some don't.. also some (perhaps most) crohns sufferers see improvement thru diet while others seem to be able to eat what they like w/o consequences. its a pretty vague area... I suggest keeping a diary of everything that goes into your body... the state you are in, and the state of things coming out too. Just a thought. but it worked wonders for me in lessening the sypmtoms I get daily.

 

[Nancy Lee]

Hello Ryan and welcome to the forum!

I could not have answered your questions better than Kev before me...

So, I will just say welcome and I think you will find a lot of useful information here.

Healing hugs~Nancy

 

[RYANP]

thanks all for you support and kindness. its good to get info from people who know. i just saw someone elses thread which could help me.
REGARDS
RYAN