Diagnosis now in question with.......

[aarond]

Lymphoma.

I was in shock to be honest when i walked out of my gastro on wednesday.

My last colonoscopy was normal, my barium FT was normal yet im getting incredible nausea, vomiting, joint pain in all joints, back pain, i have cysts and varicose veins in my testicles. Recently had a Pulmonary Embolism (blood clot in the lung) and my consultant now thinks that it could be a tumor pushing on my bowel and other organs causing crohns symptoms.

My meds are Mercaptopurine and have been on it for approx 1 year and so this lowers the white blood cells so via bloods lymphoma would be unnoticable.

I have been having large cyst like lumps under my arms recently which I thought were sweat glands but now they 'may' be lymph glands.

I am having a CT scan of the abdomen on friday 13th (LOL) to check for masses of any kind.

Oh and I also been told via the last ultrasound checking for gallstones, I have an enlarged spleen which is usually associated with lymphoma.

So to be honest im crapping myself lol thinking its leukemia basically, but at the same time im thinking if I make it through this and it isnt Crohns I get my life back.

am i sick for thinking like this or is the feeling mutual with other crohnies if they were in my boat.

Thanks for listening

All the best

Aaron

 

[D Bergy]

I guess you are right. If you can beat this, and you do not have both Crohn's and Lymphoma, you can have a relatively normal life.

The stakes are much higher now. I would research the heck out of how to treat Lymphoma. You are not likely to get too many chances at this.

There are several things you can do to make your immune system fight this better, but you have to sort through the crap out there also.

Low Dose Naltrexone is a no brainer, but your doctor will probably not even know about it.

Dan

 

[CD68]

So to be honest im crapping myself lol thinking its leukemia basically, but at the same time im thinking if I make it through this and it isnt Crohns I get my life back.

am i sick for thinking like this or is the feeling mutual with other crohnies if they were in my boat.

I had Crohn's that was mimicking cancer. Enlarged lymph nodes, fatigue, joint pain. I was at MD Anderson in Houston and the doc there took a look through the scope and came out and told my family that we should prepare for the worst that it looked like cancer to him, the radiologist that evaluated the CT scan and doc looking at the scope said that it was most likely a tumor that had invaded the intestine from the outside!...that's like what? stage 3 cancer at least? At that point I chances of survival were low. And what put me over the edge as far as my own hysteria was concerned was that the CT scan revealed some small spots in one lung and in my liver as well.

They were already bringing up the topic of scheduling surgery and chemo within days. Anyhow, pathology came back negative on cancer and postive for Crohn's, I got a second opinion on that which confirmed it.

I know it's hard operating under this kind of uncertainty, but it's not over til pathology comes back. It is not unusual for Crohn's patients to have enlarged spleens and even a granuloma (inflammatory mass mimicking cancer) to be present in it, if one can believe what they find on google. It sounds like you have a good doctor that is staying on top of things, not making assumptions, and making sure he knows for sure what is going on.

 

[aarond]

Hi CD68, wow thanks for the info that helps alot. Seems a very rare circumstance to be in. as I said in my previous thread, still not sure whether to be happy or sad, Getting rid of the crohns symptoms wow that would be a new lease of life.

My consultant absically said if we cant find anything else then we shall stick with the crohn's diagnosis and discuss remicade.

All the best

Aaron