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I'm frustrated. I started flaring in mid January (15-20 bms per day at one point). I spoke with a nutritionist and I've been averaging 2-3 bm's per day since I changed my diet. I was given prednisolone pills. They didn't work. I was admitted to the hospital and given prednisolone by IV. Didn't seem to work. Got the first dose of remicade on Feb 16th. It looks like maybe there's been a change in the consistency of the stool and perhaps less blood. The doctors remain worried because my inflammation levels (measured through blood tests) haven't gone down to the level that they would like. One doctor told me that I would need to think about surgery right away. 2 doctors after that have told me that I have time to think about the next step.

I live in Denmark and I'm 33. I'm American. My mom flew out from the US on Feb 1st. She's been here helping me with food. She now wants me to fly to the US for treatment for 2 weeks. I don't want to. I want my life to be as normal as possible - going to work, taking care of myself and having a stable treatment plan. I plan on moving to the US eventually, but not now. She insists that it will be good for my recovery to be around the family and that I can come back to Denmark when I'm better in 2 weeks. She also wonders what if I get sick in Denmark and have to get surgery in Denmark. I should travel to the US while I'm healthy enough to do so. I'm afraid of the consequences of leaving the life I've built here so fast without a proper transition. My work would be ok with me working from home.

I would have no problem with flying to the US from one day to the next for surgery if it were to come to that. I would prefer surgery in the US than in Denmark just because I would prefer to recover around family. There's no immediate threat to my life for now.

What would you do? I was envisioning perhaps moving to the US some time in the summer and giving myself time here in Denmark to get better. Is it possible that one day I might get too sick and end up having to get surgery here without enough time to fly the US?

I was diagnosed with a problem in 2 centimeters of the colon in July of 2016. I had a another sigmoidoscopy in November of 2016 and the problem was still limited to 2 centimeters. I had a third sigmoidoscopy on Feb 1st and the problem was in at least 70 centimeters.

I'm certainly no expert but you haven't even completed the loading doses of Remicade yet, let alone trying a higher dose. It's only been 3 days of the medicine. Wouldn't the next step be at least doing the first three doses of Remicade? Remicade can take a little while to work sometimes. The first dose for my son worked great for about 12 days. Second dose did nothing. Third dose put him in remission.

They never did a full colonoscopy, right? Did biopsies from the sigmoidoscopies confirm it's UC?

Have they done stool tests to rule out infections agents and c.diff?

How long were you on the oral steroids, and how long were you on the IV steroids, before determining they didn't work?

If you just started Remicade, you should notice improvement quite a bit over the coming weeks (not guaranteed to work either, but likely it will). If you feel ok and can still work, give the Remicade some time. By the third dose hopefully you'll be seeing significant improvement.

Unless you are having uncontrollable bleeding, or you have a really high fever (like 104-105) that can't be controlled, or you have toxic megacolon, there is no rush to have surgery yet.

What are your current symptoms? The blood tests for inflammation -- Sed rate & CRP (C-reactive protein) -- detect inflammation anywhere in your body and can remain high for a long time. I am in remission and mine are both still high according to blood work last week. I think it's from a combination of joint pain (have had problems with my knees for years, but they were worse last week) and I just got over a bad sinus infection.

Based on what you have said it sounds way too early for surgery.

Often times Remicade works immediately. It did for my son initially but only for several days. But not always. Prednisone only worked for him for 10 days too. Then Remicade worked again for a couple months, then stopped for a few weeks and is now working perfectly with an increased dose and in conjunction with a couple other drugs (lialda and Canasa). There are a tons of options left for you ahead of surgery (which is permanent obviously).

I know nothing about Denmark other than about 25 years ago I briefly dated a super cool, smoking hot (way too hot for me) Danish nanny. But I'm sure they know all the options available for UC. Have you even had a coloscopy yet? I know deficating blood is scary. I've watched my 10 year old son do it (literally), but do not rush into surgery unless it's a complete medical emergency.

Post Edited (NiceGuyEddie) : 2/19/2017 5:02:05 PM (GMT-7)

It sounds like the Remicade and/or Prednisone is working. It's not always magic. One dose, boom remission.

Just so I'm clear, I never put my son back on prednisone after it stopped working. He had his third Remicade dose right after and it worked immediately (but that was after the second dose of Remicade didn't work - confusing I know but UC usually is).

Weight loss is pretty common when flaring - can be from dehydration, lack of food intake, and even the burden that the ramped-up immune activity puts on you. You can burn more calories than usual just to get by.

But dehydration is one that you always need to keep an eye out for. Dry mouth, dry skin, skin "tenting" when you pinch it, lack of urination, etc. As long as you're hydrated, some weight loss is ok. 15 pounds is quite a lot, so hopefully you'll start gaining some of that back as the Remicade kicks in.

Surgery it is. They say there's no time to wait because I had a fever this morning and a colonoscopy showed ulcerative pancolitis and that a protective mucus layer was gone in 50% therefore putting me at risk of perforation and unable to travel to the US. They don't think the second dose of remicade will help. They also said there's no time for humira. Too bad. My bm's were down to 1 per day - less blood overall and sometimes no blood.

What should I ask the surgeon in our morning meeting before the surgery?

It does seem rushed. It's a team of doctors here and they all seem to agree that this is the best result. I sent my case notes to two other GI doctors, spoke with 3, and they seem to agree that this is the best result. They have it documented that I have severe inflammation. They don't specify whether it's the entire colon. My c- reactive protein levels keep going up even though I've been on prednisone since Feb 1st.

I'll ask again about the risk of perforation, but they seem to think it's high given the 50% lack of this mucus layer and increasing c reactive protein levels.

CharlotteR said...
At least 1 or 2 of the doctors are IBD specialists.

I see. Well you really consulted with a several docs and a team of GI docs and they all are in agreement so that is a different story. Sorry to hear that.

Did they rule out other sources of why your C-reactive protein keeps going up despite improvement in symptoms? Like bacterial diseases/infections since you also had a fever today. You can ask about that and risk of perforation. I don't have other suggestions, but it seems like you are in good hands and have a team treating you.

CharlotteR said...
Thank you Jane.

I'll ask if they can rule anything else out, but I know they checked for c diff and other infections and there were none.

The fever went away and hasn't come back. I was kind of thinking that maybe it was just because I was dehydrated waiting to do the colonoscopy. I suppose it could also be that the prednisone made it go away after I took it.

Hang in there. Sorry you did not get the news you wanted to hear from you docs. Many people on this forum who completed surgery have been really pleased with the outcome and would never want to go back to pre-surgery days.