Crohns and Lymphoma

I'm so sorry to hear about your lymphoma that is my biggest fear to get ! It really sucks to have crohns just simple fact we have to go through all of this you will be in my prayers! Is there a high chance of getting lymphoma?

Hello again to all of you :)

Bgstiggy keep in mind I've had crohns for over 15 years now, and this is the first time it's ever actually landed me in the hosp, much less morphed into something else like lymphoma. Really it's not something to get too worried about, and hey we live in an age of pretty decent medical care, so don't let it get you or stop you from getting the treatment you think you should have or things you want to do. Thank you for the kind words and prayer though, I really do appreciate it!

Tess thank you for the update and I really hope it starts to work for you soon. Please let us know how it goes for you and if it has or starts to relieve any of your symptoms. Biologics are so new, that many of us don't know much about it, and I for one am very interested in how it goes and what it does for you. I'm sorry to hear that your dad is going thru this lymphoma crud also, and I sincerely hope he gets better soon. Is he doing the radiation and chemo thing yet? The part that I wasn't expecting really is how much it can make your inside hurt! Bleh :(

I'm back up in the hosp today, have been here since Friday and came in through the ER. I think the oncologists just wanted Friday afternoon off or something LOL because they sent me there instead of saying 'come to the clinic' like they usually do ;) I had some bleeding when coughing, I think I irritated a blood vessel in the esophagus or something, it's not a steady flow or anything just pops up in the mucous and then goes away after a few hours. Someone is playing bongos on my heart too, and those two things are why they sent me to do a lab and get checked at the ER. I don't really recommend going there on a Friday though, it's a madhouse! Ack!

After about 7 hours down there they finally decided to get me a room, and now I"m back up here in the oncology wing, which sucks but it actually comforting in a way. I'm starting to get to know the nurses up here, and they are so wonderful about sorting out the pain and helping me eat and rest a bit. The constant days of radiation (every weekday since april 1) has brought out some very painful lumps in my esophagus and that got so bad that I couldn't swallow at all without having really sharp pain. I've asked for a few days off of Rad, so that I can heal this up a bit - between the no eating, no sleeping, and hurty crap I was getting a little nutty. At least up here I can get a break from that, nurses are wonderful people :D They will keep me a few days, I was losing weight again and dehydrated.

Some good things have happened though - I still have hair (though it is thinning a bit), the central mass that was squeezing my heart/lungs is shrinking (because of the radiation), and I got to drop down to 20mg of prednisone (YAY!). I'm more confident in the treatment process now, it's not as scary as it first sounded and I feel that it's going to be successful though it may not move along as fast as I'd hoped.

If anyone is on twitter my user name is @little_bytes, feel free to stop by and say hello! I put up a pic of kiddo and me on my first day of chemo, so ya'll can see me with some hair, I fully expect it will be gone soon :)

Today I found out that it has spread to my brain. I have one small lesion/tumor on the left side. They are going to treat it with radiosurgery, meaning super targeted radiation. Yes - I'm freeked out and scared.

I had a headache when I came to the er on Friday, and I told you in the post above about the other things that brought me here. When I told my Onc's PA yesterday about the headache she gave me a funny look and later sent me for an MRI. The tumor is small, and showed up clearly on the scan. We will start tomorrow, first making a mask thing and getting the rad settings dialed in, then apparently its just one session and then I wait to see if it worked or if I have to have further treatment.

The neurologist seems fairly confident that this will work and that I won't need surgery. I sure hope he is right. This has been one hell of a month, and it just keeps getting better... sigh. Sometimes I can't believe it's only been a month since this all started.

The rad doc says not to drive after I get this treatment but I see no other way to get down to their facility (daily) to finish the radiation treatments that I've been doing (should be about 10 more I guess). How can I not drive (in my 16 year old van, sigh), there is no one else to take me anywhere, hubby works at a job he can't take time away from, and kiddo is well.. a kid. I don't have peeps in this state, and can't be trying to make a friend just to drive me around somewhere, and honestly I can't afford to do Uber or things like that, heck I can't even afford not to work (working part time for now). We are just people, working hourly jobs, trying to get by in life. A little freeked out today, but I'm confidant in my docs, and can keep my sanity only by continuing to have some faith that this will all work.

Things were going so well, and now it's all just fading away. I'm not sure what to do except follow the path that they have laid out for me and try to pay these bills a little at a time. Sometimes I'm really confident that we will get thru this, sometimes I just cry for a while and then pick up and move along. Today was not a good day.

Aenea, I am so so sorry to hear this. If I were closer I would help you get to your appts. But Gumby is right, there are folks out there that volunteer or charge small fees to get you to your appts. I know we have them here where I live. Also a local church if you are affiliated, they may also be of help. Hang in there and keep fighting even when you don't feel like it!

I'm not much into Twitter, but I'll try to find you.

Take care,
Tess

Hi Chalmers and welcome to the forum.

I've been diagnosed with Crohn's for about 5 years now. I however have never ending constipation so when I do have diarrhea it's a welcome relief believe it or not!! Any and all of these diseases are scary when you look at them. The biggest thing to remember here is that everyone responds differently. When I was first diagnosed, I had pain and fever in my right side. The immediately sent me for a colonoscopy which revealed the inflammation in the terminal ileum. My GI also diagnosed me with irritable bowel, ulcerative colitis and crohns, lucky me. It shocked me at first. I started on Balsalazide which didn't really work too well. I then tried Apriso and Mercaptopurine (6MP), I'm now on Pentasa and 6MP and just started the Humira a month ago. It seems to be working for now. It has worked for many people but not for many people also.

It seems to me that this med is being pushed recently. Yes the thought of Lymphoma is scary, very scary since my father is nearing the end of his life with this, but my docs seemed to think that there is no increased risk to me by using this med. I guess only time will tell. Currently not having the pain in my abdomen is really a big plus. I'm still not regular whatever that might be, but I am feeling pretty good other than some fatigue at times. But it's only been a month, I can't be an example here.

And yes we have all had our breakdowns. I still do, add menopause to the whole mix and what do you get? I can start crying at times for no reason, I can also get really annoyed with any little thing rather quickly at times, but I get through it!!

So just remember it's up to YOU what you want to do. Get another GI's opinion. I'm assuming you have had a colonoscopy?? Maybe your GI is seeing a lot of inflammation in there. 40MG of Prednisone is pretty high and you don't want to stay on that for a long period of time either. So keep reading, check around more and go from there. Good luck to you!

Glad you are back home. Keep getting better!!