Aortitis - Urgent Help Needed

[Cozmo]

Hi, I've recently being discharged from hospital having being diagnosed with Aortitis. I've had a pic line fitted and getting 100ml IV erthapenam antibiotic for 6 weeks, but apparently, even though the aorta is the main blood supply, the vessel itself receives very little blood. This is apparently a very rare condition from Crohns, and I can only find one person on this site that has also experienced it, but I can't get a reply from them. I'm feeling fairly frightened as I'm told if it leaks it will be fatal. Is there anything I can do to help eradicate the infection. Are there any other meds or treatments I can try? Or is there anything I can be doing or avoiding that can help? Any advice is very much appreciated.

 

[Jennifer]

I'm sorry to hear that Cozmo. I'm also sorry that you haven't received a reply yet. The Ask the Experts section doesn't allow regular forum members to respond to threads and questions are submitted occasionally and really isn't meant for urgent help. I'm sorry your thread was overlooked.

Here's some information I've found:
"The treatment of aortitis is determined by the underlying cause. If diagnosed early, infectious aortitis responds to appropriate antimicrobial therapy, whereas noninfectious, immune-mediated aortitis requires immunosuppressive therapy. However, in many instances, primarily because of the delay in diagnosis, surgical intervention is necessary to treat the associated anatomic and physiologic sequelae. Less definitive and more controversial is the role of inflammation in both primary and secondary accelerated atherosclerosis of the aorta and its modality of treatment." http://www.ncbi.nlm.nih.gov/pubmed/12003723

Getting the underlying condition (Crohn's) under control should help and then go from there unless you need urgent treatment now. What treatment has your doctor suggested? How are you doing now?

 

[Cozmo]

I'm sorry to hear that Cozmo. I'm also sorry that you haven't received a reply yet. The Ask the Experts section doesn't allow regular forum members to respond to threads and questions are submitted occasionally and really isn't meant for urgent help. I'm sorry your thread was overlooked.

Here's some information I've found:
"The treatment of aortitis is determined by the underlying cause. If diagnosed early, infectious aortitis responds to appropriate antimicrobial therapy, whereas noninfectious, immune-mediated aortitis requires immunosuppressive therapy. However, in many instances, primarily because of the delay in diagnosis, surgical intervention is necessary to treat the associated anatomic and physiologic sequelae. Less definitive and more controversial is the role of inflammation in both primary and secondary accelerated atherosclerosis of the aorta and its modality of treatment." http://www.ncbi.nlm.nih.gov/pubmed/12003723

Getting the underlying condition (Crohn's) under control should help and then go from there unless you need urgent treatment now. What treatment has your doctor suggested? How are you doing now?

Hi Jennifer,

Thanks for taking the time to reply, I really appreciate it, and thanks for the information you've found. I've got an appointment tomorrow with the Gastro team so I'll ask about what type of infection it is, but I'm now under the vascular team as well so it may be them I need to be asking. They have said how rare it is, and want to use me as a case study, which I'm ok with as it may mean better treatment. The CT scan has gone to the microbiologist and I am on IV antibiotic ertapenam for 6 weeks (I've got a pic line fitted) and then on to 6 weeks oral. It's interesting you say about how soon it gets picked up, as I'd been going for mri, x-ray, and colonoscopy over the last 8 months before detection via CT scan. The head of vascular has suggested 3 possible outcomes:-
a) That the infection is eradicated by the antibiotics
b) That the infection is kept at a manageable level (I presume this would involve the continuation of antibiotic, so there must be some sort of limit to the plan b)
c) Very complicated major surgery. It would involve a bypass using a main artery from my leg.

I'm doing ok at the moment, I've a couple of weeks IV left and due a scan to monitor any progress. I'm off work so I'm taking it fairly easy at the moment.

Thanks again for your reply :hug:

 

[Cozmo]

I'm sorry to hear that Cozmo. I'm also sorry that you haven't received a reply yet. The Ask the Experts section doesn't allow regular forum members to respond to threads and questions are submitted occasionally and really isn't meant for urgent help. I'm sorry your thread was overlooked.

Here's some information I've found:
"The treatment of aortitis is determined by the underlying cause. If diagnosed early, infectious aortitis responds to appropriate antimicrobial therapy, whereas noninfectious, immune-mediated aortitis requires immunosuppressive therapy. However, in many instances, primarily because of the delay in diagnosis, surgical intervention is necessary to treat the associated anatomic and physiologic sequelae. Less definitive and more controversial is the role of inflammation in both primary and secondary accelerated atherosclerosis of the aorta and its modality of treatment." http://www.ncbi.nlm.nih.gov/pubmed/12003723

Getting the underlying condition (Crohn's) under control should help and then go from there unless you need urgent treatment now. What treatment has your doctor suggested? How are you doing now?

The gastro team are working on controlling the crohns to try and reduce any more infection, I'm down to 10mg prednisolone at the moment which is probably the best its been. On the link it says about aortitis requiring aggressive treatment, do you know what aggressive treatment would consist of? Do you know if the IV antibiotic can be considered aggressive enough?

 

[Jennifer]

Unfortunately I don't know anything about it other than what I looked up yesterday. Aggressive is definitely surgery along with immunosuppressive therapy yet certain antibiotics are much more aggressive than others (I do not have a list however, there are many different kinds out there that are used for different conditions). I think its possible that the IV antibiotics may be aggressive enough (IV antibiotics would be considered aggressive compared to taking the same antibiotic orally) yet it all depends on how early it was caught according to the link above.

Keep us posted. I'm learning about it as you go honestly.