Crohn's (arthritis, nerve damage) & now Lymphoma?

[Chrisb]

Hello all

I'm not new to this forum. I've been reading threads for a little while and with all the new crap going on with me I thought now would be a good time for some support.

I'm a 30 year old male have had crohns since I was 11. I took sulfasalazine for a couple years after being dx and decided I'd had enough with pills. Somehow the crowns went into remission right up until a few years ago. I went in for a scope and was told my colon didn't look all that good and should try some prednisone and see how I felt. Big mistake. It basically opened the floodgates for flares. Also around the same the time I started having serious joint pain. Soon after that I began having really bad pain my feet. I began having pain so bad I couldn't sleep or walk. I actually went to my doc and asked him to burn my nerves just above my knee so I could have a better quality of life. Of course he talked me out of it and suggested I get steroid injections as well as freezing to create a "nerve block". I had discovered my condition was called plantar fasciitis. Needless to say many needles later I just gave up. I went into a deep depression and basically slept ate and watched tv from my couch for about a year. I began using Remicade for the Crohns and it definitely helped. I developed night sweats around this same time and blamed it on Remicade. I came off the Remicade and 6 months later ended back up on it for the Crohns. Even when I was off Remicade I still had the night sweats. I had a ct scan recently and discovered I had a lymph node in my neck 2" by 1". Now I'm scared I've developed lymphoma but with everything else wrong with me it would be the icing on the cake. I go tomorrow for an ultrasound biopsy and am hoping for the best but preparing for the worst. But the worst part is I just had twin boys just under a year ago and I want to be around for them.

Anyways Thanks for listening

Chris.

Dx Crohns at 11
Arthritis
Plantar fasciitis
Nerve damage in feet
Enlarged left ventricle
Sponge kidney
Depression
Low test

 

[SarahBear]

Hi, Chrisb. Welcome to the forum!

I'm sorry to see you've had to deal with so much. Are you still on Remicade?

Night sweats are actually a symptom of Crohn's itself; it's probably more likely that it was caused by Crohn's than Remicade. Were you having any other symptoms during that time?

I hope things get better for you soon. :hug:

 

[David]

Hey Chris and welcome to the community. I'm so sorry to hear about what you're going through. That must be really scary!

The good news is that there's plenty of causes of enlarged lymph nodes besides cancer. Chances are it's not but until you get the results back, I realize these are mere words and don't help much.

As for the nerve issues in your feet. I realize they say you have plantar fasciitis but have you ever had your vitamin B12 levels tested? People with Crohn's are COMMONLY deficient in B12 and if it isn't managed, can result in what you are describing (peripheral neuropathy).

Again, welcome. Please keep us updated on how your test goes and the results.

 

[Higbonzo]

Chrisb,

Yes, it gets tough sometimes. I remember when I was about your age the pain in my pelvis became so bad I had to be wheeled into the emergency room. The x-rays showed all white around my sacrum. I wanted them to fuse the bones, but they said I wouldn't be able to tie my shoes anymore. So, with a higher dose of roids, and some time it got better.

I do understand, had in my feet as well, it lasted over six month, what an excruciating pain. I can only tell you this, because it is Crohn's Arthritis, when it does move out of an area it usually does limited damage. Which is great compared to other forms of arthritis. Doesn't make it feel any better, but it is nice to know.

I was diagnosed with crohn's about the time you were born. I remember Sulfasalazine. That made for some incredibly dark, and staining urine. They have come a long ways since those days. I hope you can find something to get you feeling better.

Night sweats, I think that is just part of the game. For me it really just depends on the amount of pain I am in at any given time. At the moment it is worst in my neck. I will get that clammy feeling though out the day. And there are times I wake up sweat soaked. I can't even use a pillow at the moment it hurts my neck so. But, I know it will go away eventually, and the crohns' is it not killing me in my shoulders at this time, so, at least I can stretch my arms out over my head when I lay down. When you have a chronic illness it is amazing what gives you pleasure in life.

I think that stress really plays a factor in this disease. Not so much mental, but the physical stress of day to day life, and with coping with the disease. When you are in pain you brain has you in a constant fight or flight pattern. It is just vicious. Twin baby boy is a bunch of stress. Try to get as much rest as possible, and just make sure you are taking care of yourself. In the long run it will be the best thing you can do for all those around you, especially those boys.

Sending out bunches of positive energy.

Peace and love.

 

[Chrisb]

Hi


I'm sorry I wasn't saying that Remicade may be the culprit if I end up do having lymphoma. I think out of everything I've tried recently Remicade has worked the best on my crohns and would recommend it to anyone having difficulties finding something that works. As for the nerve damage I was a little B12 deficient and have been on monthly shots but so far no help. Night sweats wise I have them every night. Even if I start dozing off on the couch instant sweats. So I'm a little hesitant in thinking its related to the Crohns since it began less than a year ago. The flares started maybe 3-4 years ago. Well I have my biopsy today and I guess I'll find out in a week.

Ill keep you guys posted.

Thanks for the support

Chris

 

[amyrosemoore]

i have everything crossed for you

amy x

 

[David]

Best of luck Chris!

Have they retested your B12 levels since giving you the monthly shots? Some people actually need them more frequently. It's important to retest to make sure your levels have increased sufficiently.

 

[Chrisb]

So I get to the appointment which I was told was going to be in the hospital and I find out its just a normal ultrasound? Maybe this means they're not as worried as before? Or did someone screw up? Speaking Of pissing me off is the # of appointments I have every month. I seem to have at least 4 appointments every month sometimes 5 and usually 2 in the same week.

Sorry about the rant, I'll post the results when I hear back

Thanks again guys

Chris