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should I cancel my vacation

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Posted 5/21/2018 5:17 PM (GMT 0)
I know I post a lot but I don't know anyone with IBD so my doctor is my only resource. I was in a mild flare confirmed by sig scope last week with just 5 inches of mild inflammation in the transverse colon. I tried Uceris for 5 days and today although only had one bm- saw more blood than I have since starting this disease. It really scared me and I am now on 40mg of prednisone. I almost think the Uceris made things worse if that's possible. I have a trip planned to Europe -leaving this Thursday for over 2 weeks. I guess my plan is if I see a nice improvement from the pred- by end of day Wednesday then I go on the vacation. Has anyone gone on a long trip while on high dose prednisone.

I guess Humira is not entirely working for me and not sure of next step. I cannot believe that I supposedly have mild- moderate disease that I cannot go more than a few months without flaring.

Would you cancel the trip or go???? I am worried ahh
Posted 5/21/2018 5:30 PM (GMT 0)
That's a tough one and a gamble. Did you purchase travelers insurance if you could not go due to medical reasons (airfare/hotel)? Me, personally, I'd probably go if you have the pred and are 1-bm a day.
Posted 5/21/2018 6:15 PM (GMT 0)
I went to Europe for a 10 day trip on a full blown flare while on prednisone just weeks before my surgery.

It's doable, just need a lot of stops at bathrooms and you can't enjoy Europe as much as you would otherwise with nightlife, food, etc. But this short notice I doubt you'd get your money back. Just remember, the situation is what you make of it.
Posted 5/21/2018 8:29 PM (GMT 0)
The prednisone is making me insane. I think its because I also had taken Uceris already and on top of that now 40mg of prednisone. I am not having frequent BM's but the blood was so scary. Is this a bad sign that I am flaring so soon? I only lasted 6 weeks between scopes. I am so scared because it's becoming a never ending nightmare. My doc is thinking of trying Remicade next but if I am failing Humira would I have a low chance of Remi success?

I know the Crohns forum mentioned using Imuran etc but I've seen others on here go from Humira to Entyvio etc.

Bull101 I am not having lots of BM's etc. I am just afraid of feeling like crap otherwise and of course no drinking and barely eating again.
Posted 5/21/2018 8:53 PM (GMT 0)
Well did your doctor ever do a Humira minimum blood concentration and antibodies test? That can help answer whether it makes sense to try a sister-medication to humira (Simponi or Remicade) that's also a tnf-alpha-blocker or whether it makes the most sense to try another class of biologics entirely, like entyvio.

Did you ever receive a response to humira? Did it fade?

Adding Imuran/Azathioprine/6MP could help, as seldom is one medication our perfect solution. You'd have to wait 3-months to know if it helps though... plus regular blood testing (expect 3-month intervals indefinitely).
Posted 5/21/2018 10:44 PM (GMT 0)
John

I have had 2 humira levels and they were both well above the level docs want. My doctor wants to try a prednisone wean then go back to bi-weekly Humira again. I have some side effects from Humira and he said that doubling the medication with my already high Humira levels is not what he thinks will work. I would say I did receive a response to Humira per the scopes I had this winter. I had normal scopes with normal biospies (except mild chronic in the sigmoid). I do not have symptoms before my shot is due either so its not wearing off. Supposedly this inflammation is mild, but that blood was scary! I have not gone again since today so that's a good sign. If I flare again on Humira then Remicade
Posted 5/21/2018 11:52 PM (GMT 0)
Is your UC managed? I think I could do a trip on prednisone, I'd probably be extremely irritable and volatile emotionally, plus I wouldn't sleep a wink, but so long as I could get out, stuff my face, and see the sights, I'd probably be okay. If I were in a flare up with inability to hold it, then i would say, no. I really think it depends how you feel. If you really feel crazy and uncomfortable, then you may want to see about postponing. Better to go when you can fully enjoy yourself.
Posted 5/22/2018 12:22 AM (GMT 0)
Countess, I am so sorry you keep flaring up! Also that you are back on high dose of Prednisone after working so hard to get off of it. I have started bleeding again a bit every day since getting down under 12 mg. I was flaring much worse back in February when I found myself in a little bit of a similar situation. I had planned on flying cross country to visit my best friend. I agonized about canceling the trip. I bet I would have been even more concerned if going overseas. Ultimately, I went, and it was good for my heart, even if it didn't make things better for me. My friend is limited in mobility as well, so we were not doing a lot of walking. I had a huge amount of blood one day while out there that scared me-but I had lost my mind and had run the day before-something my body doesn't like if I am flaring. I was nervous about flying. I sat in the back of the plane because there were two bathrooms instead of one. I requested disability assistance, and used it if I was to tired to get through the airport. I wore depends because I was scared of having to go during take off or landing. I ended up not having any problems on the flights. How long will your flight be? Mine was only 5.5 hrs.
Posted 5/22/2018 12:25 PM (GMT 0)
NSSG- I love the comment of being cranky but ok if you can stuff your face and see the sights ..that should be my attitude

Spring-- I know it!! I should not have tried Uceris last week and would have been able to try to start at 20mg of prednisone but then I got stuck starting at 40 again. My doc wants me to do a quicker wean i.e. 10mg per week because the inflammation was mild. He wants me to try to stay on on bi-weekly Humira but I am not that hopeful that it works for me.

I love everyone on this sight that has helped me so much. I am going to Italy with the prednisone because when I get back it's going to be weeks of weaning pred and deciding if I need to switch to Remicade. I am not looking forward to it so I might as well enjoy myself now while I can -without the wine - so sad-- .
Posted 5/22/2018 12:32 PM (GMT 0)
Take/ship back a few bottles of wine to celebrate once your off of the dreaded pred. ;-)
Posted 5/22/2018 4:17 PM (GMT 0)
Enjoy your holiday...you've earned it!
Keep us posted if you can while there.

q
Posted 5/22/2018 4:52 PM (GMT 0)
Why no wine on pred? I did fine with alcohol and prednisone, no issues.
Posted 5/23/2018 2:22 PM (GMT 0)
Bull101 I don't know I thought it would make me bleed more.

I still have blood in my stool and upper left sided pain continues as that's where my inflammation is. I am on day 3 of prednisone and the last time I started pred last fall with even more inflammation I felt so much better by day 3. The inflammation was mild last week and the doc said the biopsies were extremely mild but I'm still bleeding. I only have 1 BM per day though so far. My trip is tomorrow. Is this still a gamble or no? I want to go really bad and should respond to prednisone right?

I told the doc I am done with Humira - it never has made me feel great and I want a different maintenance plan. I want to try remicade and he told me it is still probably the best drug out there for Crohn's anyway. I don't want to add the immunomodulator's at this point but will if Remi is not enough.

Is there a chance I could suddenly get worse even though I'm on 40mg of prednisone?
Posted 5/23/2018 2:36 PM (GMT 0)
My trip is tomorrow. Is this still a gamble or no?

YES

I want to go really bad and should respond to prednisone right?

SHOULD, BUT NOT ALWAYS


Is there a chance I could suddenly get worse even though I'm on 40mg of prednisone?

UNFORTUNATELY, YES
Posted 5/23/2018 4:38 PM (GMT 0)
I think really only you can decide if it is worth it. For me, if it was non refundable I would risk it even if I was nervous. I have also lived a portion of my life as very nomadic and what some would consider very adventurous. It makes me more willing to go, "ok, depends, check" than perhaps another person. On the other hand, if I could go again another time and enjoy it more, I would post pone. What are your biggest concerns? Write them down and see if you have a reasonable answer. If not, cancel the trip.
Posted 5/23/2018 5:30 PM (GMT 0)
Also comes down to if you want UC to control your life. The day that I let it do that was the day I decided to get surgery....

As mentioned above, if it's non-refundable I'm not sure why this is even a question. A trip to Europe is not cheap, plus no guarantee that next time you'll be better. May even be worse. If your symptoms are just blood and you're at 1 BM a day then I see 0 gambles going. If you get worse, you'll get worse here just as much as over there and you won't need a trip to the hospital within a week or 2 if you're still at 1BM a day. May as well enjoy a trip before you get worse, if you get worse.
Posted 5/23/2018 6:13 PM (GMT 0)
Im still fairly new to all of this and the blood still scares me. I have some pain but I am guessing that as I continue on prednisone the inflammation will get better. It was only 5 inches of my transverse that was affected per the scope last week. He said the rest of my colon was textbook perfect. I also thought that why wait for things to get better because I may not be better anytime in the near future. It has been ruling my life for 2 1/2 years and I have to learn to deal with it. I am on Humira, on 40mg of prednisone and am not having diarrhea and the blood while still there has decreased since Monday. I swear the 5 days on Uceris caused me to get worse. I wish I had started the prednisone last week!

Bull, Spring-- thanks for the support once again. So seeing blood is not the end of the world? I have the upper left side pain that reminds me that it's there so that's unnerving as well. What is I get worse-- what are the options in Italy?
Posted 5/23/2018 6:44 PM (GMT 0)
Tensemus, and crazy urgency are the end of the world. Blood is not. Blood is pretty minor, it's just a warning sign to be proactive do something asap and you are. smile
Posted 5/23/2018 9:36 PM (GMT 0)
well the doc has said it was okay to go and I have overseas health insurance in case of emergency. I could also fly home if I needed to as I did take out airfare insurance. Im scared but I guess this will be a step in not letting the disease rule my life. I am now going to start Remicade when I return and hope for the best. Pray for me please ....
Posted 5/24/2018 1:34 AM (GMT 0)
I hope you have a really good time!
Posted 5/24/2018 1:40 AM (GMT 0)
I hope you have a great time too. I am with iPoop, a little blood is dealable. it's the urgency and accidents that would make me stop a trip. i think you will be okay. Try to take it easy and enjoy yourself.
Posted 5/24/2018 1:49 AM (GMT 0)
Have fun and take it one step at a time. Be proactive but not over-vigilant.
Posted 5/24/2018 1:00 PM (GMT 0)
I am canceling the trip and hope that our travel insurance will reimburse us for the airfare. I think most of the airbnb's I booked are refundable. I had increased bleeding during the night and have a good amount of left sided pain despite the 40mg of prednisone. I feel too ill to go. The next step is Remicade -- has anyone gone from Humira to Remicade with any success? I am so completely deflated and down I am losing hope for having any normal kind of future.
Posted 5/24/2018 1:23 PM (GMT 0)
Countess, you had posted in the crohns forum about bios & got a couple of replies. I was on Remicade for 3 1/2 yrs & did well. I developed antibodies & was switched to Humira. You said in the crohns your dr would not add something like Imuran because of lymphoma risk being high. His thinking is outdated, newer studies have shown a very low risk of the potential. My gi says Imuran helps enhance the affect of the medication & helps with developing antibodies so fast. I was on Remicade every 4 weeks. It may be worth trying Remicade to see if it helps. Tough decision.

Sorry you had to cancel your trip. Take care.
Posted 5/24/2018 2:16 PM (GMT 0)
Oh no countess, I am so sorry. I think it's t he right decision if you're concerned you're getting worse or not responding. You can go when you're able to enjoy it more.
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