Recently diagnosed

[willow634]

Hi everyone
I have recently been diagnosed with crohns disease a couple of weeks ago and am finding it hard to cope at present. I am unable to eat anything without having severe cramps, and feeling nauseas.
The doctor won't prescibe me anything as they haven't received my notes from the hospital so all I have is paracetomol and codeine phosphate which don't touch the pain when its at its peak. I'm finding it difficult to work even though I am still working, most of the time I am in severe pain and even though I am on light duties I am even finding that difficult I haven't told work how bad the pains get as can't afford to have time off as still got my bills to pay. I feel I'm in a vicious circle as know I need to rest more than I am but can't at present. My husband is so supportive and is always looking out for me but I know he is worrying about it even though he hasn't said it I can see it in his face.
Until I see the consultant in August I have no idea how bad the crohns is, I have been given very little information on it apart from what I have researched on line. I still waiting for the dietician to get in contact. I don't know what I can and can't eat, even soups cause me pain. I need to eat to keep my strength up but can't eat as don't want the pains and nauseus.
I find this forum helpful as we all have something in common and can relate to each other symptoms as well as offering support and understanding.
At some point I have to have a colonscopy done where they will also take a biopsy to see how bad it is.
I am feeling so low about it and can't seem to shake the feeling as always in pain so its hard to carry on with day to day activity because of the disease.
If anyone can offer any words of advice I would be truly grateful. Sorry for waffling.
Thankyou

 

[Rossy]

Hi, I would have thought that the specialists in the hospital would be advising on your treatment, the way I read it you are suggesting that the GP is awaiting your hospital notes before he decides on your treatment plan....that does'nt sound right to me. Can I ask how they diagnosed you, again I would have thought that if newly diagnosed they would want to speed up the scope but they shouldn't now just be giving you general pain killers as much more targeted drug therapies are available, sounds like you need steroids or similar.
Have you tried contacting the hospital direct, most UK hospitals have a dedicated IBD nurse, my suggestion would be to phone them and tell them the pain you are in, by pass the GP is my advice.

 

[willow634]

Hiya I was first diagnosed when I had crippling stomach pains accompanied by vomiting, I went to my GP who then sent me straight to hospital. I had a CT scan which confirmed I had crohns disease. I was discharged 2 weeks ago with no advice apart from I will be seeing a consultant soon and a dietician. I have been prescribed codeine phophate and paracetomol, thats all they will give me at present. I went to my Gp last friday to explain the pain I am in and the feeling of sickness all the time but as I said they haven't received my notes from the hospital so can't give me anything else at present. Its another 2 weeks yet before I see the consultant. I have contacted the hospital to ask for more help but they basically couldn't help me and said I would need to see my GP. I told them they haven't received my notes yet but they were still unhelpful, although did say if the pain got really bad I was to go back to hospital! I am finding some days such a struggle and feel I am not getting the right support from the medical profession.
Thankyou for replying

 

[Rossy]

Ok sorry to hear that, but that is so alien to my experience of the NHS. It does'nt sound to me as if you are getting the treatment you need. Perhaps you should consider going back to AE if the pain continues.
Hope you get better soon.

 

[willow634]

I will if pains get too bad and thanks for replying.

 

[David]

Hi willow and welcome to the community I'm really glad you found your way here!

First off, I changed your username so that it no longer provides your email address. Having an email as your username can lead to problems. If you want it changed any further, please let me know

With that said, I'm sorry to hear you're struggling so much right now I guess what you can do at present is research. I would:

1. Research enteral nutrition, the Specific Carbohydrate Diet, and the Paleo diet. When it comes to diet, people with Crohn's seem to do best with those.

2. People with Crohn's Disease are commonly deficient in vitamins and minerals. Ones to ask your doctor/dietician about include vitamin D, vitamin B12, folate, magnesium, iron, potassium -- those are super common but if they're willing to test for others, all the better.

I don't want to overwhelm you so suggest you start there. Read and learn everything about this disease you can. It'll definitely help you in the long run. And we're happy to help in any way we can.

*hugs*

 

[willow634]

Thankyou for that, I certainly will research it as am at a loss and just want the pains to go away, even if its for a day so I can carry on with normal activities instead of being crippled with pain

 

[willow634]

Advice please??

I was recently diagnosed in July with Crohns, and have had 3 admissions to hospital in the past 6 weeks, a colonscopy was performed and biopsies taken.Waiting results.
My CT showed a large inflammation at the end of my large intestine joining the smaller intestine (hope that makes sense) which apparently due to the scar damage an op will be necessary to remove part of it. Has anyone else had this kind of surgery and did you have to use a temporary stoma bag whilst it healed.
Since I left the hospital 3 weeks ago I am on Azathioprine 100mg a day and Omeprazole 20mg as well as steroids and paracetomol. Im also taking Modulen build up drink as losing weight, I still get pain though on a daily basis. I had hoped the tablets Im on would help, the pain isn't as bad as it was but I still get pain. Its worse if I go out walking anywhere or if Im on my feet too much. The pain is more like a deep throbbing pain which comes in waves. Its driving me nuts as one minute I'm okay and the next I have to stop and sit down, till the pain passes. even walking to the shop takes it out of me
I am still having bloods done weekly and my white cells are still high which concerns me as I don't want to go back into hospital.
I got to go back to see the consultant next month to get my results and then I am to have an MRI scan to see if the inflammation has spread.
Sorry for rambling but feel all over the place at the moment and just need some advice.
Thankyou in advance

 

[David]

Hi Willow,

I merged your new "Your Story" post into this one, I hope you don't mind.

The surgery you describe is probably the most common one people with Crohn's disease have. You can no doubt find others who have been through or who are going through the same thing in our surgery forum here.

The end part of the small intestine just before the large intestine is called the terminal ileum. Between the small intestine and large intestine is a valve called the ileocecal valve. And then the first part of the large intestine is the cecum. Quite often that stuff is removed. Usually a bag is not necessary as they just join the two parts. Did your surgeon suggest that you would be needing a bag?

 

[willow634]

hiya no problem I'm still new to this site so still finding my way around.
No he didn't but maybe a possibility depending on how much he has to takeout as he doesn't know how bad inflammation is apart from what the CT scan has shown him, but he wants me to have a MRI scan done frist to see if the inflammation has spread?

 

[David]

That makes sense to me. He probably wants to see higher up in your small intestine where a colonoscopy can't reach. It sounds like he is being thorough which is a good sign.