How bad is it?

Hi all!
I'm new to this but was diagnosed with Crohn's two year ago. I've had it for at least 15 years I think but was told it was iibs. I've had four admissions and sent home with paracetamol after each I manage relatively well and had worked out what I could and couldn't eat prior to diagnosis on the whole although keep discovering new things! I've been very tired and felt generally rubbish for a few months on and off so was sent for an MRI scan. Previously I had very small patches of inflammation with the worst part being the illeo caecal valve which also had scarring. Now I've been told I have 15-20 cms of inflammation in my small bowel and have been started on budesumide. I'm wanting to know from people if this is considered to be moderate in the Crohn's world or still mild in the scheme of how bad it can get? Obviously I'm less well at the moment but overall manage ok!
Thanks all

Welcome. You talked about being tired. Have they done any blood work to see if you might be anemic?

Bloods are ok. I've got a constant fuzzy headache and tiredness so thinking its because I'm got inflammation going on?

Hi Lindsay, sorry to hear you are another member of the Crohn's family. I know where you're coming from with your "moderate" question but rather than thinking about how your Crohn's would rate on purely a "medical" scale (there probably is some medical rating system that produces a severity score) I think it's better to look at how it affects your lifestyle. Does it stop you doing anything or going anywhere?

Crohn's around the terminal ileum/cecal valve area is common, I know from personal experience. On balance, in 40 years, I've had a lot more time in remission than active disease. You just have to accept that there will be bad times and with the support of a good consultant you will get through to the other side.

Regards, Nigel

Hi Nigel
Thank you for your reply. I totally understand what you mean. My career is fairly medical so sure that's the way my head is used to working but probably not very productive! I am not prevented from doing most of what I want to do so I'm very lucky. I do however feel worse on medication to be honest and have to treat redux more aggressively on steroid treatment. Hopefully it will settle though and do the trick at calming things down!
Many thanks
Lindsay

highlandsrock said:

Hi Lindsay, sorry to hear you are another member of the Crohn's family. I know where you're coming from with your "moderate" question but rather than thinking about how your Crohn's would rate on purely a "medical" scale (there probably is some medical rating system that produces a severity score) I think it's better to look at how it affects your lifestyle. Does it stop you doing anything or going anywhere?

Crohn's around the terminal ileum/cecal valve area is common, I know from personal experience. On balance, in 40 years, I've had a lot more time in remission than active disease. You just have to accept that there will be bad times and with the support of a good consultant you will get through to the other side.

Regards, Nigel

Click to expand...

Agree

ronroush7 said:

Agree

Click to expand...

Has anyone got experience of symptoms worsening on steroids initially?

Systemic steroids like prednisone have given me some stomach pain, and I've had to resort to taking carafate to help with that. I also take PPIs every day to cope with reflux. They have also helped treat crohn's (it showed up first in my duodenum).

Jabee said:

systemic steroids like prednisone have given me some stomach pain, and I've had to resort to taking carafate to help with that. I also take PPIs every day to cope with reflux. They have also helped treat crohn's (it showed up first in my duodenum).

Click to expand...

Thanks for your reply I'm on ppi's and have upped those. Is carafate prescription only?

Hi Lindsay:

Carafate is prescription. So is sucralfate which is easier to take. I forgot I had taken that as well. I've had Barrett's esophagus in the past, so I have to be really careful when my reflux gets bad. It's so ironic that one of the most potent anti-inflammatory drugs can make some things better but others worse. Budesonide doesn't seem to bother my stomach the way prednisone does but when things get bad it's always prednisone that knocks the inflammation back down.

On another note, my son sent me the following this morning

https://www.sciencedaily.com/releases/2017/07/170705113546.htm

Now I have something else to worry about! I've been taking PPIs for years. If I don't my reflux is really severe.

Jabee said:

Hi Lindsay:

On another note, my son sent me the following this morning

https://www.sciencedaily.com/releases/2017/07/170705113546.htm

Now I have something else to worry about! I've been taking PPIs for years. If I don't my reflux is really severe.

Click to expand...

I just read the article as I have been taking Omeprazole for 5 years. Yet again a research paper uses relative risks (50%, 25% chance etc) but only once quotes an absolute figure for the increased risk of death - 1 extra unexpected death in 500 - which I make a 0.2% increased risk. I wonder if the researchers use the relative figures just to grab headlines or justify their research. 50% grabs a lot more attention than 0.2%.

highlandsrock said:

I just read the article as I have been taking Omeprazole for 5 years. Yet again a research paper uses relative risks (50%, 25% chance etc) but only once quotes an absolute figure for the increased risk of death - 1 unexpected death in 500 - which I make a 0.2% increased risk. I wonder if the researchers use the relative figures just to grab headlines or justify their research. 50% grabs a lot more attention than 0.2%.

Click to expand...

I agree. It all gets silly. A 0.2% chance of early death is better than years of agonising redux in my opinion anyway!

Hi all,
Update! I had illeo caecal resection 8 days ago. Recovery so far has been very swift with minimal pain. I had 15cms removed laparoscopically and wound healing well. Off pain killers and eating a normal diet. I have started with some Diarrhea today but without pain. I was warned to expect this and had it with Crohn's and although it has been more frequent today it has been bearable. I was told with some people it settles? Has anyone experience of this? I have slightly more reflux and a little wind and still feel lethargic but overall have recovered to this point much quicker than expected! Calling people who’ve had the same? I was partially obstructed due to inflammation as opposed to strictures. Tia lindsay

Everyone is different. With me, it took maybe three months. I am glad for your progress

Hi! Thanks for your reply! And how do you feel after 3 months? Don’t get me wrong I’m not fine as such, was just expecting worse case scenario! What symptoms do you have now and did you have some Diarrhea initially?

Hi Lindsay, glad it went well. I had the stricture in my terminal ileum removed in 2010. If you also lost this area then please ask your consultant/surgeon to explain bile acid or bile salt malabsorption. It's an area which HCPs either don't know about or don't think to mention. Whilst I've been Crohn's drug free since the operation I do have to take Colesevelam/Loperamide to combat the BAM

Hi! Yes I know about this and surgeon did mention. He said that bike salts also get absorbed in less amounts in the colon and generally the less the resection the less the symptoms. Apart from today I’ve not had any days with excessive d. I wasn’t expecting a total fix but did weigh up? I didn’t want steroids or immunosuppressant therapy hence in part the decision. Do you find any particular foods/drinks make things worse or is it a bit like Crohn's? No two days the same?!! Overall are you better post op than pre?

*bile!

Lindsay, my resection was eight years ago. I have dealt with the bile acid malabsorption mentioned above. Some of my symptoms have returned. It is hit and miss on how I feel.

Ok thanks for your reply.