Aortitis

[Cozmo]

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Hi, I've recently being discharged from hospital after 3 weeks 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.

 

[Ihurt]

I am so sorry to hear about this. I am guessing they diagnosed you with infectious aortitis? There are different types, one being infectious and I believe there is a non-infectious type and an idiopathic type. Are they sure this was due to the crohns? I know it cam manifest from lupus, but I have not heard of it being a symptom of crohns really. Although it may be more so because of some of the medications used in treating Crohns. I am assuming you are being seen by a cardiologist right? What was the plan when discharged you from the hospital? Did they mention any treatments or surgery for it?

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Hi, I've recently being discharged from hospital after 3 weeks 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.

 

[Cozmo]

I am so sorry to hear about this. I am guessing they diagnosed you with infectious aortitis? There are different types, one being infectious and I believe there is a non-infectious type and an idiopathic type. Are they sure this was due to the crohns? I know it cam manifest from lupus, but I have not heard of it being a symptom of crohns really. Although it may be more so because of some of the medications used in treating Crohns. I am assuming you are being seen by a cardiologist right? What was the plan when discharged you from the hospital? Did they mention any treatments or surgery for it?

Hi Ihurt, thanks for your reply. Yes, I'm now being seen by the vascular team as well as the gastro team. They haven't informed me of which type it is but they must know themselves as it went to the microbiologists to determine on which antibiotic to use. I will ask when I'm next in. It was described to me only as an infected aorta. They seem pretty clear that it is from the Crohns and they all stress how extremely rare it is for this to happen. The plan is to have 6 weeks IV antibiotics (I've got a pic line fitted) and then a scan, and then on to 6 weeks oral antibiotics. They have talked about 3 possible outcomes.
1) That the infection is eradicated by the antibiotics
2) That the infection is reduced to a manageable level
3) Very complex major surgery
If it goes to surgery it will involve a bypass, using a main artery from my leg.

It's funny you mention it as a possible cause from Crohns medications as prior to hospital admittance I was having a violent reaction to azaipthaine, I'd come up in big red spots which seem to have scarred me,and I was severely vomiting!

Thanks again for taking the time to reply and for sharing your understanding on what appears to be a very unknown about condition, I really appreciate it. :hug:

(I'm going to go and read up a bit on Lupus)

 

[Ihurt]

Oh wow, well at least you are in the right hands with the doctors. It sounds like it was the infectious type since they have you on all the antibiotics. I did a little googling and from what I have read, with the infectious one at least they can treat it with the antibiotics. If they can get the infection resolved, that is a good thing. Did the doctors think it could have had anything to so with the azaipthaine? I hope the antibiotics you are taking will lick this. In the mean time try and rest and take as best care as you can. Rest in very important right now. I will say a prayer for you that you kick this thing soon and everything goes smoothly. Oh, also ask your Gastro doc if you can take some probiotics while you are on all the antibiotics to help keep your gut flora strong. Big hugs back at ya!!!

Hi Ihurt, thanks for your reply. Yes, I'm now being seen by the vascular team as well as the gastro team. They haven't informed me of which type it is but they must know themselves as it went to the microbiologists to determine on which antibiotic to use. I will ask when I'm next in. It was described to me only as an infected aorta. They seem pretty clear that it is from the Crohns and they all stress how extremely rare it is for this to happen. The plan is to have 6 weeks IV antibiotics (I've got a pic line fitted) and then a scan, and then on to 6 weeks oral antibiotics. They have talked about 3 possible outcomes.
1) That the infection is eradicated by the antibiotics
2) That the infection is reduced to a manageable level
3) Very complex major surgery
If it goes to surgery it will involve a bypass, using a main artery from my leg.

It's funny you mention it as a possible cause from Crohns medications as prior to hospital admittance I was having a violent reaction to azaipthaine, I'd come up in big red spots which seem to have scarred me,and I was severely vomiting!

Thanks again for taking the time to reply and for sharing your understanding on what appears to be a very unknown about condition, I really appreciate it. :hug:

(I'm going to go and read up a bit on Lupus)

 

[Cozmo]

Oh wow, well at least you are in the right hands with the doctors. It sounds like it was the infectious type since they have you on all the antibiotics. I did a little googling and from what I have read, with the infectious one at least they can treat it with the antibiotics. If they can get the infection resolved, that is a good thing. Did the doctors think it could have had anything to so with the azaipthaine? I hope the antibiotics you are taking will lick this. In the mean time try and rest and take as best care as you can. Rest in very important right now. I will say a prayer for you that you kick this thing soon and everything goes smoothly. Oh, also ask your Gastro doc if you can take some probiotics while you are on all the antibiotics to help keep your gut flora strong. Big hugs back at ya!!!

Thanks for your reply and prayer. I too am praying that the antibiotics can kick it in to touch. I'm off work for now so have got time to rest up a bit. They haven't said whether they think it was an actual result of the azaipthaine, but they did take me straight off it. I personally am inclined to think it's been something I've had going on for quite a few months due to the back pain I've been experiencing. The vascular team suggest that it is the infection that causes the back pain and not the crohns. I'll ask about the probiotics.

They've asked to use me as a Case Study due to the rareity of the condition, which I'm quite pleased about as it will probably mean a bit of extra attention :smile:

 

[Ihurt]

Well whatever caused it, hope those meds kick it's butt! You know maybe it is a good thing to be in a case study. That way you know there is a bunch of doctors looking into your case and in my opinion, many heads are better than just one or even two! That is good. Hang in there, you will get through this....