Update - Crohn's with Chemo

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JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 107
   Posted 7/3/2018 10:59 PM (GMT -6)   
As some of you have seen back in April, after 20 years with Crohn's mainly in my small bowel, I have been diagnosed with stage 2 small bowel cancer in the jejunum. I am on my fourth dose of the 5FU, out of 12. They started me on the full FOLFOX6 treatment, which is a combo of two medicines (5FU and oxaliplatin, along with folinic acid), but the oxaliplatin gave me such bad neuropathy after two doses... my doctor decided to drop it as the risk of long term damage for my age (29) is greater than any benefit at this point.

Interestingly enough, about 2 weeks ago, I got scoped with an enteroscopy (meaning they went all the way through my remaining 180 CM of small intestines, as well as all my large intestine, to check it all out). Everything was the best it has looked in years, perhaps ever since I got diagnosed with Crohn's... and we are 2 months out from my surgery.

I saw my GI yesterday when I got my chemo pump set up, and he said that chemo meds are great for keeping Crohn's in remission due to the suppression of the immune system and the killing of all bad cells in the intestinal tract. He thinks I may not even need to start a medicine regimen until 6 months after I finish chemo in October.

The 5FU's worse symptom is the nausea, which between zolfran and compizine, I can keep that under control. My energy level has been low and some irritation of my intestinal lining have caused some strong pain for a few days, but at least I know it goes away... unlike pre-surgery obstructions I was having! The neuropathy with the other medicine scared me. I am still feeling effects of it, and haven't had it the last two times.

I still think it is interesting to see how well my crohn's is controlled right now with just the chemo... and I am curious to see how my crohn's behaves after my chemo is completed. Honestly, with how much it is reworking my immune system, my hope is that it isn't as severe as it has been for 10+ years... would be great if I could control it with the milder medicines instead of the expensive biologics!

Here is to hoping for the best following this!

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1929
   Posted 7/4/2018 4:15 AM (GMT -6)   
So sorry to hear of your Cancer diagnosis. Stage 2 seems really early, so I hope the prognosis is extremely good. You sound like you taking the best possible attitude towards your treatment. Wishing you all the best going forward. Please keep us posted on your progress.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.

mtb
Regular Member


Date Joined Feb 2010
Total Posts : 69
   Posted 7/5/2018 5:50 AM (GMT -6)   
So sorry to hear about your diagnosis and wish you the very best outcome possible.
I was recently diagnosed with gastritis and I too find the nausea hard to take. For me it seems to be the worst part of being not well.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16402
   Posted 7/13/2018 1:45 PM (GMT -6)   
Jake, found your post & wanted to comment about the chemo & neuropathy. Are you going to an infusion center for your chemo? If so, discuss being given ice chips to chew on during the infusion, along with ice pack gloves & bootie type things for your feet. Often, various types of chemo can cause this & you should be offered the above. If they are not offered, you ask for them. These are used with people going through IV chemo for various types of cancer.

Please keep us posted on how you are doing.
Susie
Moderator in Chronic Pain & Psoriasis Forums

JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 107
   Posted 7/16/2018 11:54 AM (GMT -6)   
Hi Susie,

They took me off of the oxaliplatin that was causing the severe neuropathy in me. It has helped, though I am still having some minor tingling at times, and some pain if I hold a cold soda too long. They said keeping me on the oxaliplatin was a bigger risk than benefit at this point. Still on the 5FU though.

Speaking of the 5FU, I Have been in this battle with my oncologist to admit that it is causing the bleeding and severe pain I am having in my abdomen. They keep saying they think it is the Crohn's doing it. I actually had to get my IBD team to tell them, a few times, that my Crohn's is totally calm right now and they think it is the 5FU chemo drug causing the issue. Even so, they are very much not wanting to admit to it... kind of walking around it.

I was actually admitted last week for an infection and a bad cold, and they experienced my after effect of my 5FU. They saw the diarrhea with blood, they saw my increased pulse rate with pain, and had to give me a consistent level of dilaudid while I was there to keep it under control... as I was waking up every couple hours in pain and in need of it.

Because of that admission, I am bringing up the pain management side of things to them again today. I have brought it up to them before and they never answered my question regarding it. They made my GI prescribe me some oxycodone to help manage things...which IMO they shouldn't as this isn't Crohn's related. I actually had the oncologist who was in the hospital at the time of my discharge tell me to talk to them about the pain management at today's appointment... so now I have a reason to bring it up. Either way, I am sick of this game playing and I am sure it is this "war on opioids" so everyone is trying to get out of helping me there. I am no where near an addict, and can control myself in taking or not taking the oxy 5mg tablets. I may need them 10 days out of the month, but it is regular and routine based on my side effects of the chemo. I can drop it and not take it when I feel I don't need it, but I need to know I will be taken care of if I need to take stronger stuff.

All I can say is it is super frustrating. I am not sure how to best handle that situation, but my GI has gone above and beyond where the oncology department has left me hanging or without a constant plan for things outside of my regular chemo.
29 year old with Crohn's since 1998
Medicines: Remicade (restarting 2/2018), Methotrexate
Supplements: vitamin D, zinc, b12, multivitamin

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1929
   Posted 7/16/2018 3:44 PM (GMT -6)   
How much longer to go with Chemo? Hopefully you can get the pain you're having under control. At least your Crohn's is under control right now. If they could get your pain managed how would you be doing overall?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16402
   Posted 7/17/2018 12:15 PM (GMT -6)   
Jake, how did the appt go, was the dr receptive to adding something for pain control?
Susie
Moderator in Chronic Pain & Psoriasis Forums

JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 107
   Posted 7/17/2018 10:29 PM (GMT -6)   
Susie and monte:

I had the appointment, and the very odd thing is that the PA basically finally admitted that the chemo was causing these side effects (in her words: three times in a row isn't a coincidence anymore). She talked of getting pain meds for me, and said she would talk to my oncologist. about a half hour later, he came into the room and gave me two options: to end chemo that day or end it in two rounds due to all the side effects I was having.

The confusing part to it all is while the diarrhea and bleeding is an issue, since my hemoglobin is stable and I have fluids I can give myself anytime via my PICC... I am not too concerned as long as the pain is under control. I asked him that question "since that is the one issue I can't control, could you help me there?" and he gave me a confused look, and said "I can certainly help with that"... almost surprised that is all I needed.

I am not sure what the PA told him, but it seems like she said something different than I told her, because I basically said I just needed something to help with the pain for about 10 days out of the month. To basically go from that to "just end your chemo, even if the risk of it returning elsewhere is higher" just seems odd to me. The PA has been the one not responding in regards to my request for this before. If my doctor is that OK with that, I wonder what has been being told to him??

Just confusing, but I did end up getting some oxy to help for a month. I want to revisit after the next treatment (which would be at 3 months, the second option he gave me) and if the pain meds continue to help... I am more than willing to keep going if it gives me a greater chance of being cancer free.

Do you think maybe that PA has issues with narcotics, so she is making it seem as if I was having more issues than that to my doctor? She has seemed to be the roadblock I have been dealing with for a while here.... and to see my docs surprised face when I brought that up as a solution seemed odd, too, almost like that was the first time he heard it and was relieved that is all I needed....

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1929
   Posted Yesterday 4:09 AM (GMT -6)   
It sounds like there was a communication problem for sure. Somehow, someone dropped the ball on relaying your needs on pain management. Good that you'll getting it under control.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16402
   Posted Yesterday 6:17 AM (GMT -6)   
Jake, it sounds like the PA really did not understand what was going on with you. Or another possibility is she does not have authority to script pain meds. With all the hysteria surrounding pain meds this would not surprise me at all.

Regardless glad the dr was willing to help.
Susie
Moderator in Chronic Pain & Psoriasis Forums

JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 107
   Posted Yesterday 10:40 AM (GMT -6)   
I think the bleeding part threw them off (and was what they were concentrating on)... as I guess pain and extreme diarrhea is a side effect of the 5FU, as I found out at the end. I think it does irritate the lining of my intestinal tract, and somewhere along the line it causes some GI bleeding.. not enough to cause issues though. My doctor did say I am "rare" in the case that I am having all these side effects together, but they can happen.

One thing I will say for sure is that they were so hellbent on trying to blame the issue on my Crohn's... I think they tried two or three different times to get my GI doctor involved, only to have my GI say it wasn't my Crohn's every time. This last visit was the first time they admitted that the chemo could do it. It was just so odd... but at least it is finally figured out and they are helping me where I need the help.

Thank you both for your insights and such! It is appreciated.

Jake
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