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Posted 3/23/2015 5:09 PM (GMT 0)
Hi,

I'm a 46 yr old mom with one wonderful son who is 13 and a very wonderful husband who I married three years ago. I'm very blessed with that, but we are in a new state (in the south) and I know very few people here and no one with Crohns or other health issues.

In January I had a flare, not something that I do very often as I'm usually very careful with my crohns.

I spent 9 days in the hospital for an intususession(sp), small bowel blockage, and stricture. So that worked itself out after a lot of strong meds and I left the hospital with the usual routine of prednisone, Imuran, pentasa, flagyl, and a few others. I had to do a lab every week after that because my CRP was still high.

Then my teeth flipped out, and a bridge came out and I had to go to the oral surgeon to have the remnants pulled of two molars. They don't know if it was poor timing or a reaction to the flare/meds. So my throat glands swell a bit and I get more antiobiotics.

My GI was about to put me on Humira two weeks ago because the CRP keeps rising but I talked him into putting it off. That was Feb into early March.

Last week (Monday) at my lab the CRP is higher and at the follow up appointment I asked the GI about some swelling above my right clavicle he got a little worried. The throat glands have improved but something is pushing on my windpipe and it hard to breath in some positions.

He sent me right in for a chest xray, and when that came back with an abnormal he set me up for a CTscan the following morning. That showed two lymph nodes enlarged, one behind the stricture and one further up. I saw the surgeon the following morning (Thurs) and on Friday had a surgery for bowel resection, a biopsy, and another little cut for a lap scope. They think it might be lymphoma and I'm waiting now for the biopsy.

They let me out on Sunday, so I'm home today working and on my yummy liquid diet. (Oh yeah forgot to mention that, since January Ive been on liquids lol)

I want to hear from anyone who has dealt with lymphoma. I'm scared but determined, it just sucks having no one to talk to.

Regards,
Aenea
Posted 3/23/2015 5:47 PM (GMT 0)
Hi Aenea
I am also being investigated for lymphoma. I have swollen glands in my neck and arm, I also have severe itching, fever and night sweats. No diagnose yet mad
Posted 3/23/2015 6:04 PM (GMT 0)
Thank you Veronica so glad to hear from someone :)

I'm feeling you on the swollen glands neck and arm, its such an odd and uncomfortable feeling..

And nightsweats suck.

>.<

LOL I'm going to fight this all the way, I'm on it. I'm so FREEEKIN glad to not be living in the 1800's or even have this happen 20 years ago.

Want a friend? I sure do.
Posted 3/24/2015 12:07 AM (GMT 0)
Swollen lymph nodes can ofter just indicate an infection, or even a cold or flu. Hopefully, nothing more than that. I'm sure you're anxious to find out. Good Luck, hope all works out fine.
Posted 3/24/2015 12:31 AM (GMT 0)
In my case they are swollen for 8 months now, i will do new CT in april to check if they are bigger
Posted 3/24/2015 4:02 AM (GMT 0)
Thank you all for answering. You know how it is when you are staring at the walls and stuck inside your own head :)

Veronica that is a long time for such swelling, how are you doing? Have you had a biopsy yet or will you?

73monte I'm anxious indeed heheheh. Thank you for the kind words, they may be just pixels on a screen to others but they mean a lot to me.

Hard to sleep tonight, can pass a tiny amount of air now but nothing else and it's getting really uncomfortable. Walk walk walk and drink fluids, but got to get these bowels moving again. How long after a resection do they turn back on? Sigh.. and laugh at the same time. Before the surg on Friday I was in the 'explosive D with leaks' category, honestly I'd rather be there than have no movement at all. I took a some lax earlier but no help there.

Sometimes you have to laugh or cry, tonight I'm choosing to laugh :)
Posted 3/24/2015 6:31 AM (GMT 0)
My Mom had lymphoma on the side of her head, right next to her ear. They removed that gland as was as some saliva glands. That was some 15 years ago and it's never returned. Thank goodness! It makes me nervous though, because I know we have an increased risk of getting it (the medications and maybe just the disease itself). My last CT abdominal scan showed some enlarged glands in my lower abdomen. They believe it's just from all the inflammation in my body. But it's scary!
Posted 3/30/2015 7:03 PM (GMT 0)
Just the word Lymphoma is scary.
On topic, everything I've read concerning Lymphoma and Crohn's shows that it occurs when patients are on multi-therapy, remicade plus an immuno-suppressent like immuran.
A little off topic, my Grandma was diagnosed with breast cancer in 1955. They took the left breast and all the lymph nodes from the left wrist to the waist. She lived another 35 years, going quietly at 85.
Posted 3/31/2015 4:19 PM (GMT 0)
Thank you all for the replies, it's very much appreciated.

What's funny to me is the timing of it all, and I too suspect Imuran played a role in this. In January they could see a lymph node enlarged on the CT scan but it was next to the stricture so they figured it was just inflammation. Now there is this big ole' thing up in the center of my chest, making it hard to breath.

I'm trying not to get upset or weird, I don't want my son to get upset and he's already worried.

My GI is trying to get me off the prednisone as fast as possible so I dropped from 60mg down to 40, and now this week I'm at 20mg/day, which is faster than I've ever stepped down. Hope he knows what he's doing here :-)
Posted 3/31/2015 6:44 PM (GMT 0)
Hi Aena,
Have you gotten your biopsy results yet? My friend has severe Crohn's and she is now in the process of 6 chemotherapy treatments for lymphoma. She is doing well, and they are hoping for a cure. I wanted to let you know that as part of the chemo treatment protocol, they have her on 100 mg of Prednisone for the entire 18 weeks of chemo. I know that is miserable, but I'm wondering if you should be weaning off the Prednisone right now? Have you talked with an oncologist yet? I'm so sorry for all you are going through. My friend was on Remicade and Imuran. People with Crohn's are at higher risk for lymphoma even without the immunosuppresants, so it is hard to know if the meds are the cause.
Posted 4/1/2015 1:03 AM (GMT 0)
You know I'm finding this post at a time when I'm hugely undecided here.....I was diagnosed with Crohn's, UC, IBD, you name it....it's all there in 2010. I am currently on Pentasa, 6mp and Linzess. I have the constipated version here and am usually fighting to go. However in the past month I've had 3 small flairs and this 3rd one just doesn't want to end. As of today I'm now on Prednisone also for a short taper at least. My doc is pushing Humira.

My biggest dilemma is that my father has Lymphoma. I am already at a higher risk for lymphoma. Per my doc the risk to me isn't any higher because of family history! So what do I do????

Aena, I'm so sorry for all your troubles and I hope all works out well for you. Your post just struck a cord with me. I'm on here trying to find out whatever info I can. Keep positive.

Tess
Posted 4/1/2015 4:51 AM (GMT 0)
Tess, even with my Mom's lymphoma my doctor also felt that my risks were no higher. Especially for the more rare form that these meds can sometimes be associated with.

I actually wish I had tried the biologics sooner. I was scared to with my family history, but letting the Crohn's get so bad certainly didn't work in my favor either. Now I've had to try so many different ones because my disease got so bad that they wouldn't work. Which has landed me more time in the hospital. So far I'm doing well with Remicade now, and have added Methotrexate. I've decided that it's worth the risk to try and get this under control.
Posted 4/2/2015 3:49 PM (GMT 0)
Hi Tess,

Welcome and no problem at all!

It's a hard decision to make, there is a lot of competing information on biologics. I do know my GI was very relieved that he hadn't started me on Humira yet, he kept saying that over and over the last two appointments.

I'm back in the hospital today, getting a port installed for the chemo treatments and will also have at least one radiation treatment. We are waiting word back from the Mayo on what specific type this is so that the ONC doc can determine what type of chemo to give me. It's a little scary but my biggest hope is that it's being addressed quickly and my doctors seem confident that they can handle this.

I'm in Mississippi, usually known as the 50th worst in healthcare, but I have to say that in this particular situation (first the crohns flare and then this other thing) I have been really impressed with the medical care I'm getting. It's not fragmented, the doctors know each other and are consulting closely, and although I'm sure to get some kind of whopping bill from all of this so far that hasn't been their first concern. :)

Fingers crossed for this, I've never had a port or this other stuff before so here goes another learning experience!
Posted 4/4/2015 1:21 AM (GMT 0)
Aenea, sorry to hear you're in the hospital, but it sounds like they've caught this early and hopefully can get you under control. I wish you all the best with this. I'll keep looking for updates from you.

Jennifer, thanks for the encouragement. It sounds like the biologics work wonders for most folks. I think even though I'm in a flair up I'm still in the early stages of this disease. I have had not had any surgeries and have not been on a lot of different meds either. That's another thing.....are they pushing the Humira on me?? I guess I'll seek some other opinions starting with my father's oncologist and go from there.

All the best to everyone......
Posted 4/13/2015 8:01 PM (GMT 0)
Hi all,

Checking back in after the port has been installed and let's see I've had 7 radiation treatments now and 1 round of chemo.

The chemo was not hard to receive, and I actually felt ok that day and part of the next (Friday and part of Sat). Then it hit my bowels.... (intro scary music lol)

That was not cool, heheh, not cool at all. It felt like there was a massive plug in, followed by a lot of pressure. It took hours in the bathroom to come out, was like giving birth all over again but with no pain relief, finally the plug passed and then there was a HUGE volume of fluid and air, and then it started over again. Getting thru the resectioned part was the worst I think. I passed out for a few hours near the bathroom and then was up again with the big D during the night many times. That was Saturday eve into Sunday, so now I'm up again and back at it. I'm actually glad I got the chemo, it was not fun but my insides feel better and these 'masses' feel smaller plus I can breath well this week thanks to the rad.

So - it is do-able and though its not exactly fun I can definitely say there is some improvement in health. I'd not like to put my poor intestines through this again, but I know they will get better as this all moves along. Another 5 weeks of treatment and my hope is that this will just all be on it's way to gone cool

Just wanted to stop in and say HELLO and I'm still here and thank everyone who is reading along or has thrown down those very important words of encouragement!
Posted 4/13/2015 8:49 PM (GMT 0)
Hi Aena,
Sorry you had such a rough time with the bowel movements and the chemo. It sounds awful. My friend is just about to take her last round of chemo (#6) for lymphoma. Her lymphoma was in her breast. Her oncologist has had her on 100 mg of Prednisone the entire time she has been through the chemo. That has beed miserable as far as affecting her sleep, but she feels it has kept the Crohn's in check. You might want to ask your oncologist about it if you aren'e already on Prednisone. I know your lymphoma is in your chest, so I don't have a clue how that changes treatment. My friend's oncologist is hoping for a complete cure from the lymphoma. I hope that's the case with you too. Good luck with everything and I'm so sorry you are having to go through all of this!!
Posted 4/13/2015 8:51 PM (GMT 0)
OOps! I realize now I already told you about the Prednisone....sorry! I'm getting old and senile!!
Posted 4/14/2015 12:14 AM (GMT 0)
Hi Aena,
So sorry you have to go through so much. But this too shall pass, just hang in there. Keep a positive mind and attitude even though it's hard.
I've decided to bite the bullet and try the Humira.....it should be in my hot little hands tomorrow. Then off to the docs for the first injections. Hmmm....this should be interesting giving myself shots! I can do this though!! We all can.......
Take care
Tess
Posted 4/14/2015 12:25 AM (GMT 0)
Aena, I just wanted to send you positive vibes,any prayers love and hugs!
You will knock this out and move on with all this in the rear view mirror!

Please keep us updated on how you are doing!
Posted 4/17/2015 3:15 PM (GMT 0)
Hello all! Waving at you from back in the hosp again, I'm getting to know the people up here in this wing pretty well :)

Gumby, no worries - I have prednisone brain all the time now and forget what I have said and sometimes even what I've written, heheh. I'm back on 40 mg, and no word yet if they will up or down that dose while this is ongoing.

Tess, I hope your shots went well! Please let us know how you are feeling and if it has helped any, I know many are wondering how you feel and some are still looking for more info on Humira. It's a big choice!

Pmedic, thank you again for the encouragement. I know it's pixels on a screen but it's real people behind those words and I appreciate the positive that you send :)

I'm back in the hosp because I've had no bowel movement after the big D train that passed thru and ended last Sunday. So nothing since Monday, not even gas. It's bad, it's yucky, and its a lot of painful pressure. I woke late Wed night with some really sharp pain, and called in to the on-call doc # to ask "how does one know if you have popped a gasket inside?" meaning, how do I know if I'm leaking outside of my bowels and into my abdomen because something was obviously very wrong. He didn't think I'd popped any leaks but did ask me to come in for an xray. I wasn't really happy to be heading to the ER, I've never actually had to go there for Crohns or anything else (first time for everything I guess)...

So I got to the ER and they were expecting me, which helped with the wait time. They took Xrays of my abdomen and it showed that Im having some Ileus, which is no movement in the bowels at all. Also I was anaemic, which I never would have guessed, having little experienced with that. I guess I had so few red blood cells that my body was shunting all the available resources to heart/brain, major organs leaving none to head to the stomach and run the pumps there. Who knew that could happen? Ha, I feel so new sometimes...

So they gave me two transfusions, and then I got radiation again while here and chemo, which they are changing up a bit with different types of chemo med. I'm still up here in my room, hoping to go home today, and also waiting on the lovely side effects of chemo to kick in. You actually feel pretty good for a few hours to a day from all the steroids and stuff they give you before chemo, then the down side starts and that is usually nausea vomiting and the big powerful D explosions. Right now I'm looking forward to having D for the first time in my life. I mean I really want it, please come along and move this old food out! I'd sit on the pot for hours if it meant something would just move lol. I'm sure after it starts I won't be so YAY about it, but for now I sure do wish it would just come on and get things over with.

So that is this weeks update, doing pretty good, learning lots of things, and trying to stay upbeat about this whole thing. I explained to my son last night when he came to visit, that sometimes you just need the kind of help a hospital can give you and they have really nice nurses up here. It's better than being on the floor at home scaring the family, and I really do appreciate the help, especially with so much going on that I really have no experience with. Even after 15 years with Crohns there is still a lot to learn!
Posted 4/17/2015 4:32 PM (GMT 0)
I'm so sorry to hear that you are having so much trouble with your Crohn's on top of the lymphoma. You have a great attitude, which is wonderful, but I can imagine that this all is very hard and scary for you. I hope the transfusions make you feel a little better and that you poop very soon. I've had a couple of partial bowel obstructions and I know how painful they can be! Keep posting and hang in there. We are out here in cyberspace routing for you!!
Posted 4/23/2015 7:54 PM (GMT 0)
Aena, I hope you have gotten some relief since you last posted. I am like you and prefer diarrhea over constipation any day. Did you get a recharge from the transfusions? I always felt so much better after getting transfused. I hope you are too.
We are here praying and thinking positive thoughts for your healing!
Hugs!
Posted 4/24/2015 6:08 AM (GMT 0)
Aenea, I'm so sorry to hear the struggles you have to deal with. I look forward to your next post, thank you for sharing your journey with this,you are very inspiring. I know for me, being on a biologic, it's constantly in the back of my mind. I hope you are doing better, sending lots of gentle hugs and prayers your way.
Posted 4/28/2015 2:21 PM (GMT 0)
Hi all!

Last week I was pretty tired, so didn't post much or update this thread - my apologies. This week is going a lot better so far and HEY I actually haven't had to go back to the hospital YAY! So I'm pretty happy about that.

The ileus has let up a bit, which is great news because I can eat some now and I'm really really happy about that. It's still soft food and soup for the most part, but hey food is food and I'm happy to be back to it :) I've been taking the full routing of miralax, stool softeners, ducolax, and lots of walking and thankfully the bowel action restarted, so that is pretty cool.

The lymphoma treatments seem to be working better, at least I hope they are. I feel better, so that gives me a lot of hope. The doc has me on a fair amount of pain med now, which I appreciate (but didn't help the bowel slowdown), but that lets me move around a lot more and I've actually made it into work several times and I love that part. Working makes me feel connected and part of the world, not isolated and shut in at home. Plus this is all pretty expensive so it's a relief to be able to bring at least part of my pay back. I'm doing radiation once a day still, and that has been shrinking this central mass that was pressing so on my heart and lungs. I can breathe :) So very grateful for that!

Chemo hasn't been too bad, still waiting for my hair to fall out though I've seen some thinning already. Sometimes I get fairly nasty nausea, sometimes it's not too bad. Still kind of wish the big D would start up again though lol. Where else do you actually WANT that? LOL only with bowel problems.

Thank you for all of the kind wishes and words, I read and appreciate every single one. It's hard to post when you are down, and though I try not to get too blue sometimes it happens, on those days it's just hard to want to talk to others. That was me last week I guess. But I really don't want to stay there, it helps a lot to go out and walk, get out and work, and feel like a normal person even for a few minutes. It's hard to believe that it's only been 6 weeks since this all started...

Better every day though right?!
Posted 4/30/2015 12:53 AM (GMT 0)
Thanks for posting and keep hanging in there Aena! You have quite a positive attitude, but I can't imagine anyone in your situation can possibly escape feeling really low sometimes. My friend just finished her last round of chemo for lymphoma this week. Her oncologist is hoping for a complete cure, and I am hoping the same for you too!!
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