• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Feelin' defeated

I'm sure my feelings right now will pass but I just feel like giving up today. For about a month now I've had swollen lymph nodes which is something new to my medical history. I've had all the tests done and the only course of action is antibiotics. I get put on the antibiotics and the lump vanished. 3 days later it returns so my DR says my body probably needs more than a regular course of antibiotics.

I can honestly say that I've never had this bad of a reaction to antibiotics. Normally I notice an improvement in days and this time around my body is rejecting everything. It's trying to clear itself out--I probably haven't completely got rid of passed infections--thank you immunity---but it's draining on my body. My lungs hurt and feel bruised. My nose is raw. I hardly can breathe out my nose. TMI but I had black flem among all sorts of colours coming out.

This pain of an infection is also bringing up all sorts of unwanted Crohn's thingies because I haven't been able to be on my regular course of Meds. I can handle it thou I just don't know how much more I can handle this infection. I'm physically drained here so close to wanting to be hospitalized but then again realizing what could they do.

In my desperation I even started to research if it was possible to grow a new immune system. I saw this medical discovery show sbout a young baby who was born with no immune system so they made her one... :sign0085:

I'm sure I'm becoming my DR's worse nightmare now
 

my little penguin

Moderator
Staff member
Did they do a chest X-rays and quantiferon gold blood test ???
Swollen lymph nodes can affect the lungs as well
Ds went through this
He had to have blood work
Multiple ultrasounds
Chest X-ray
Iv abx
Ct scan
Needle biopsy and finally removal of the lymph node

Very long process to determine not an infection or cancer
We were told initial for over a month it was just a virus

Took close to 2-3 months just to get it settled and we still don't know why it was there in the first place
 

my little penguin

Moderator
Staff member
Oh and did you see infectious disease ?
We learned quickly
With Crohns infectious disease has seen more cases and can handle immunosuppressed ibd patients.
 
I'm sorry you're having a hard time. I can relate, I had numerous colds last year, and I found that they lingered much longer than normal. One cold I had lasted six weeks. I finally went off Imuran in January, and have only had one cold so far this year. With Stelara, they don't tend to prescribe anything else. When you're feeling drained like that, be gentle on yourself and get lots of rest. It's a roller coaster ride for sure.
 
Also should check to see if it's sarcoidosis... I have crohns over 20 years and had over 30 (doc lost count) lymph nodes swelling up in my lungs and on my skin. It was sarcoidosis... and I started with just crohns then sarcoidosis started after about 12 years after crohns. And really made it a lot harder to manage my crohns. Hang in there. I do feel drained and defeated almost on a daily basis.
 
I've had multiple chest X-rays done as well as ultrasounds of the lymph nodes. The only thing directly found from the ultrasound was that it was indeed swollen lymph nodes and was put on antibiotics. I'll be on antibiotics for a month now come this week. I don't think I've fully recovered from past infections that this one is here with vengeance. As of today no sign of my recurring swollen lymph nodes but I've still battling the infection. I'm doing 2 nasal rinses a day among other things but there seems to be no end to my system being completely cleared. 22 boxes of Kleenex later:yfrown:

Did they do a chest X-rays and quantiferon gold blood test ???
Swollen lymph nodes can affect the lungs as well
Ds went through this
He had to have blood work
Multiple ultrasounds
Chest X-ray
Iv abx
Ct scan
Needle biopsy and finally removal of the lymph node

Very long process to determine not an infection or cancer
We were told initial for over a month it was just a virus

Took close to 2-3 months just to get it settled and we still don't know why it was there in the first place
 
Top