Terminal Ileal Crohns Disease

[StocktonLad]

Hello,

I've been living with Crohn's Disease for almost 2 years.

Medication hasn't worked and I recently discussed the possibility of surgery with my consultant. I have recently been for an MRI scan to re-assess the severity of the Crohn's.

The is an extract from the letter:

"Your recent MRI does not show any evidence of active Crohn's disease, the appearances are more in keeping with 'burnt out' inflammation resulting in the formation of scar tissue. This will not respond to medical treatment and I don't think there is an endoscopic solution to this problem. Therefore your initial decision to consider surgery is most appropriate"

What I don't understand is, if I have no evidence of active Crohn's Disease, why do I feel so rotten, why do I still present the symptoms of the disease. I'm confused.

Any advice will be much appreciated.

Thanks

John

 

[Clash]

What symptoms are you presenting with? Scar tissue can cause pain, when eating since it strictures the area. Have you had recent vitamin tests run? If you have damaged tissue/scar tissue in the areal of your terminal ileum it can cause malabsorption which can lead to vitamin deficiencies. Deficiencies can cause severe fatigue as well as many other issues.

Of course the MRI could well have missed something. When have you last had a colonoscopy? Were they able to get through the IC valve to the terminal ileum to take biopsies?

 

[StocktonLad]

Hi,

I suffer from acute lower abdominal pain, which gets worse before I open my bowels (sorry). I am also very tired all the time, aches and pains in my joints. My upper abdomen is always bloated which gets worse after I eat.

I've had every test going but I don't I've had a vitamin deficiency test.

Thanks

John

 

[Clash]

The aches and pains in joints could be an extra-intestinal manifestation of Crohn's. There are several types of joint pain(arthropathy) that are EIMs of Crohn's. Some of them run concurrent with active Crohn's disease flares and other run independent of active flares.

The acute pain, bloating and so forth could definitely be from the stricturing due to scar tissue.

You may want to ask you doc to run some vitamin levels, vitamin D, B, magnesium, zinc and folic acid are probably a good start. My son was deficient in Vitamin D which is quite common in those with terminal ileum disease and supplementing did help with energy/fatigue levels.

I hope you get some answers soon.

 

[annawato]

John I think it is one of the frustrating parts of crohn's disease. All the tests are normal but you still feel awful. In your case the scar tissue is probably the cause of the lower abdo pains and the way the disease is affecting the rest of your body is making your feel lousy. Unfortunately tests often don't show why this is. i struggle with terrible muscle and joint pains even when my crohn's is behaving so its not unusual for you to be feeling this way. Vitamin tests as Clash suggests are important too to rule out any deficiencies.
All the best,

 

[Justanothercp]

StocktonLad,
When I had my stricture, I had a lot of pain after every meal. Fatigued easily, night sweats. And tons of bloating. I was functioning very poorly, struggling to make it through the day. Surgery was my only option. I felt way better after and got my life back.

 

[StocktonLad]

Thanks Anna and JustanotherCP. It's nice to hear from people who are suffering in exactly the same way as I do. You have both described how Crohns affects me.

Thank you.

John

 

[Crohn's gal since 1989]

Hello,

I've been living with Crohn's Disease for almost 2 years.

Medication hasn't worked and I recently discussed the possibility of surgery with my consultant. I have recently been for an MRI scan to re-assess the severity of the Crohn's.

The is an extract from the letter:

"Your recent MRI does not show any evidence of active Crohn's disease, the appearances are more in keeping with 'burnt out' inflammation resulting in the formation of scar tissue. This will not respond to medical treatment and I don't think there is an endoscopic solution to this problem. Therefore your initial decision to consider surgery is most appropriate"

What I don't understand is, if I have no evidence of active Crohn's Disease, why do I feel so rotten, why do I still present the symptoms of the disease. I'm confused.

Any advice will be much appreciated.

Thanks

John

Two weeks ago I had 50cm of strictured small intestine removed at the TI. While getting my pre surgical tests done, the Drs discovered that while this area had always been my #1 Crohn's inflammation area, there was no inflammation present, but a smaller area of small intestine closer to the Jejunum was exhibiting active Crohn's even though I had completed a course of Prednisone and have been on Imuran since May. Perhaps you have another area of active Crohn's that is not yet detected.

My GI's plan is to start me on Remicade once I am healed from this surgery.