Hi everyone just had my diagnosis confirmed yesterday and feeling bit down about it now ... didnt think i would but hey its sinking in now ... am in quite a bit of pain and still dont know how to make it go away ... just awaiting the referral to a specialist who can actually help me now ... i have started doing a food diary to figure out the things that set me off but the inflammation and pain is doing my head in ... plus i cant take any of the painkillers and anti inflammatories i usually take for arthritis because it makes the stomach pain a lot worse ... does anyone have any idea what i can do to try to ease the symptoms until i get on some medication for crohns x :heart:
Newly Diagnosed :(
- Thread starter scotslass
- Start date
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Angrybird
Moderator
Hello and welcome to the forum.
I am sorry to hear about the diagnosis hun, it is never easy to take it all in. Just know you have come to the right place for lots of helpful info and support.
Out of interest who has confirmed the diagnosis and was this via scopes/other tests? Is there a particular reason that they have not been able to start you on any type of med to help? One thing that may help ease things a bit for you is to go on a very bland, low residue diet, perhaps stick to things like mashed potato, soups, rice etc. Try not to eat things with pips, seeds or skins as these tend to aggrivate the bowel.
Do you know who is sorting the referral and to whom? If not perhaps try to get this info and see if there is a way to push for an urgent appt, sometimes once you know which consultant is being written to you can get in contact with the clinic they work out from and see if they have had any cancellations. In some cases the receptionsists can put you through to their secretaries and you can get a quicker appt this way - I have done this myself in the past due to the issues I was having.
I hope you will be able to see someone soon and getting on some treatment.
Please keep us updated on how you get on.
AB
xx
I am sorry to hear about the diagnosis hun, it is never easy to take it all in. Just know you have come to the right place for lots of helpful info and support.
Out of interest who has confirmed the diagnosis and was this via scopes/other tests? Is there a particular reason that they have not been able to start you on any type of med to help? One thing that may help ease things a bit for you is to go on a very bland, low residue diet, perhaps stick to things like mashed potato, soups, rice etc. Try not to eat things with pips, seeds or skins as these tend to aggrivate the bowel.
Do you know who is sorting the referral and to whom? If not perhaps try to get this info and see if there is a way to push for an urgent appt, sometimes once you know which consultant is being written to you can get in contact with the clinic they work out from and see if they have had any cancellations. In some cases the receptionsists can put you through to their secretaries and you can get a quicker appt this way - I have done this myself in the past due to the issues I was having.
I hope you will be able to see someone soon and getting on some treatment.
Please keep us updated on how you get on.
AB
xx
Hi there thanks for ur reply 
i was diagnosed following colonoscopy, stool sample and mri scans with dye it was a colorectal specialist who diagnosed me and is referring me to another specialist for the medical side now ... there are ulcers and scarring in small intestine ... he mentioned terminal ileum is badly damaged and the inflammation level is over 800 - am having a lot of stomach pain and also have a lot of other symptoms - including arthritis, eye pain, right upper shoulder pain, tiredness, nausea as well as other things ... will try the low residue diet for now thanks ... i have been trying to lose weight and was on a high fibre diet with lots of veg and fruit which i think has brought things to a head lol ... so the low residue one might help calm things down ... not on any medication yet as just newly diagnosed and havent been to see the specialist who is going to organise all of that yet ... hopefully wont be too long now - i have been on b12 tablets, iron and folic acid for a while but think i might need to up them xxx
i was diagnosed following colonoscopy, stool sample and mri scans with dye it was a colorectal specialist who diagnosed me and is referring me to another specialist for the medical side now ... there are ulcers and scarring in small intestine ... he mentioned terminal ileum is badly damaged and the inflammation level is over 800 - am having a lot of stomach pain and also have a lot of other symptoms - including arthritis, eye pain, right upper shoulder pain, tiredness, nausea as well as other things ... will try the low residue diet for now thanks ... i have been trying to lose weight and was on a high fibre diet with lots of veg and fruit which i think has brought things to a head lol ... so the low residue one might help calm things down ... not on any medication yet as just newly diagnosed and havent been to see the specialist who is going to organise all of that yet ... hopefully wont be too long now - i have been on b12 tablets, iron and folic acid for a while but think i might need to up them xxx
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Hi scotslass. A very big welcome from me too. I'm sorry about the diagnosis. It's a lot to get your head around, I know, and you'll probably have a lot of mixed emotions. Which hospital will you be going to to see the specialist?
When I got my diagnosis and appointment for the specialist, I had a 6 week wait and was starting to feel a bit panicky as my symptoms were worsening and it was getting to the stage where I couldn't cope with work etc. The letter didn't actually say Crohn's, so I phoned my GP and she confirmed the test results. She also put me on a low, tapering dose of Prednisolone til I could see the GI as this is often the first med you are started on with severe inflammation. It did in fact give me quite a lot of relief.
There are issues with it, so it would be worth looking at the treatment subforum to read up a bit about it.
If your symptoms get really bad, it might be worth seeing your GP. Meantime, I think the food diary and experimenting with the low residue diet are probably the best things you can do.
When I got my diagnosis and appointment for the specialist, I had a 6 week wait and was starting to feel a bit panicky as my symptoms were worsening and it was getting to the stage where I couldn't cope with work etc. The letter didn't actually say Crohn's, so I phoned my GP and she confirmed the test results. She also put me on a low, tapering dose of Prednisolone til I could see the GI as this is often the first med you are started on with severe inflammation. It did in fact give me quite a lot of relief.
There are issues with it, so it would be worth looking at the treatment subforum to read up a bit about it.
If your symptoms get really bad, it might be worth seeing your GP. Meantime, I think the food diary and experimenting with the low residue diet are probably the best things you can do.
thanks everyone i think just cos i am having a lot of symptoms i never actually tied together before and now im also feeling like my shingles is returning and stomach is so distended and painful i just want to give up lol ... i wont tho will work thru this and know that there are other ppl who have been thru this and come out the other side ur right tho it is a lot to get ur head around ... i am going private just now for treatment so should hopefully be quite quick ... i also have a really bad lower stomach hernia (which was the original reason i was referred) and im not sure which symptoms are coming from that and which from the crohns lol ... am so confused right now ... the hernia needs surgery and everything has been postponed til i had all of these tests done - the colorectal surgeon suspected cancer at first so i guess i was quite pleased when he first told me it was crohns ... only because i didnt really know much about it lol xxx
ur right tho it is a lot to get ur head around ... i am going private just now for treatment so should hopefully be quite quick ... i also have a really bad lower stomach hernia (which was the original reason i was referred) and im not sure which symptoms are coming from that and which from the crohns lol ... am so confused right now ... the hernia needs surgery and everything has been postponed til i had all of these tests done - the colorectal surgeon suspected cancer at first so i guess i was quite pleased when he first told me it was crohns ... only because i didnt really know much about it lol xxx
afidz
Super Moderator
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Hello and welcome!
Thank goodness it isn't cancer! I too have hernias in my abdomen, some days its hard battling pains from crohn's as well as pain from the hernia. The hernia can cause back pain and back pain can cause joint pain. Talk to your GP about pain killers that are ok for Crohn's patients. anything with ibprofen will be bad for your stomach as for as OTC goes. Alot of people on this forum find heat comforting for the stomach aches we get (heating pad, hot baths etc) so give that a try and see if that brings you any comfort.
I think its great that your keeping a food diary. I ma sure you have read that everyone's disease is different, there are some foods that are ok for one person but not for the next. I hope you get in to see a GI soon and are on the path to recovery!
Thank goodness it isn't cancer! I too have hernias in my abdomen, some days its hard battling pains from crohn's as well as pain from the hernia. The hernia can cause back pain and back pain can cause joint pain. Talk to your GP about pain killers that are ok for Crohn's patients. anything with ibprofen will be bad for your stomach as for as OTC goes. Alot of people on this forum find heat comforting for the stomach aches we get (heating pad, hot baths etc) so give that a try and see if that brings you any comfort.
I think its great that your keeping a food diary. I ma sure you have read that everyone's disease is different, there are some foods that are ok for one person but not for the next. I hope you get in to see a GI soon and are on the path to recovery!
Angrybird
Moderator
I would also say you need to get all your vitamin levels checked, it may be you need a different type of supplementation to what you are currently having.
