Colonoscopy results not good.

I posted about a week ago about my Daughter having a colonscopy. We got the results today from the GI nurse.

All along we've been really concerned with her stricture, and thought that the scope not being able to get through it, was a sign that surgery was going to be the next option.

The stricture wasn't really a concern, and she said that it's quite common to not be able to get into the TI. The big concern is that there is inflammation in her cecum, and what she said are two small fistulas starting.

They feel that the Imuran she's been on isn't working, and want her to move onto Remicade or Humira, her choice. The thought of anti TNF's really scares us. We were really hoping to avoid them until she was much older (19).

Would really like to hear anyone's recommendations or experiences. We're feeling pretty scared at this point.  

So sorry that your daughter is having some troubles with fistulas that are starting to develop. It's so heartbreaking when our kids get sick , and it hurts so much to worry about them. I hear what you are saying about hoping that you could wait on the TNF meds, but one way to look at it is that it is a very good thing that there is a medicine available that will likely help her feel better in a relatively short amount of time. Another thing to remember is that there are safer medicines being developed and tested right now, so if Remicade stops working, or you decide to try something different, a better med may be just around the corner. Hugs!

72monte,
I know TNF blockers are scarey. But I have heard of great success stories of people being able to be on them for years. I was on Remicade for 1.5 years. I got relief after my first dose. It did gradually lose it's efficacy and I had to do double doses, but got a few more months out of it. I had to go off it because I developed an allergy to it, but I did love the drug. I am on Humira now. Just had my 3rd dose last week and am still waiting for it to kick in. But my docs also say I have a very aggressive disease, so most would not have to wait this long.

Think of it this way. Without the hefty drugs, you are likely heading towards surgery much sooner than you would like. Remicade (or Humira) could give her more time before that happens, and will likely give her quick relief of her symptoms and possible remission. I always found my Remicade days to be relaxing. They gave me an excuse to do nothing but relax for a day, which also helped in many ways.

Good luck with your decision making. I know it is tough when it concerns our kids.

tanya

Hi,

In my experience predisone does not help fistulas, however Remicade will. Your daughter may have to have surgery because remicade can cause blockages higher up in the bowel where she is already having issues. This happened to me and I had the surgery and then when problems arouse later (a few years) I tried remicade. It helped, but due to remicade induced lupus I had to discontinue it.

It is never easy to know which way to turn. Has your daughter had any surgery?

Julia

73monte,
Here is where you have to have a little faith. First, to you trust the Doctor? When it comes to children they tend to be real careful, I doubt he would endanger a Youngster. The side effects of Remicade don't just happen over night. If There are problems you could have it switched to something else.
Those other little nasties that are statistical aborations, follow me a sec. out of the whole population the number of people with Crohns. 1.4 million in the US, I looked for how many people take Remicade could not find that number. if a million took it there might be less than 10000 cases of getting something. That's how I looked at it. Low probability and trust in my Doctors judgement and a measure of faith. I have 5 teenagers to think about. I would not have taken a risk that I felt was not worth it. What good to them are we if can't make informed decisions? I was on Remicade for about 13 months and I only have 3 eyes and two noses. :)

Better Living Through Chemistry
73,
Tom

Believe me I hear what you guys are saying. I think what bothers me the most is not the risk factors or even the unknowns.

It's the fact that my Daughter's only 19yrs. old. If she was 30 or 40, I would be advising her to try it.

Also, now that she's an adult, our GI treats her like she's 30 or 40, and doesn't want to deal with me at all.

I'm not coddling her, but it's pretty tough to start making these kind of decisions at that age.

Anyway, I've made an appt. with our family Dr. to get her imput, and possibly get a second opinion or consultation with another GI.

Tanya,

You make a very, very good point for sure. If the anti TNF's work for her, it could indeed prevent extensive problems and surgery as you say.

I'm trying to be positive of course, but the back of your mind will fear the worst. What if it doesn't work? I feel like we'd be at the end of the line at that point I suppose.

As far as our GI goes. I'm in Canada. You always hear that we have the best Health care system in the world. In many ways we do. The problem is, being publically funded, it's extremely overburdened. Often times you're treated like, you need them, they don't need you. If you have a good Dr. they're like gold here. For example, this colonoscopy my Daughter had was to confirm results from an MRE 18 months ago. Then there's the MRE, which was a 3 month wait, and that's quick.

I could have got her the MRE in Buffalo, NY. the next day. Of course it would have cost me about $400-$600.

Tom.

Tom,
I hear ya about our health care system. To make matters worse I am in New Brunswick. You take what you can get. There are little to no second opinions, and wait times are usually long.
I have been very fortunate in that I have had very good doctors. My GI even takes my phone calls himself some times. I have a great fear of when he retires, because I know it will never be as good. I have been good with wait times for the most part too, for most things.

Keep your head up. Try not to worry....I know easier said than done. And good luck to you guys on your decision making.

Hi,

I think if I were you when you see the GI again I would ask: While the remicade is going to help the inflamation and fistulas in the cecum, won't my daughter still have pain at the TI from the narrowing caused by the stricture? I have also been told that once you go off Remicade you can't always return to it. I would also ask about having a balloon dilation on the stricture, that procedure has saved me 3 times already.

Keep us posted, and I think the doctors should most definately keep you in the loop. Your daughter might have to tell them that it is ok to talk to you about her health.

Julia

Once again Thanks everyone for replying:

All of your suggestions and experiences are really helping right now quite a bit.

Dingleerie, it sounds like you and I are in a similar place. I relate to everything you're saying. If you make the decision to go to Remicade as well, I think you want to avoid the combination with 6MP. That seems to be where most of the risk comes from. 

Julia: as fas as the stricture status, and what would happen to it with Remicade. It seems to be at most a secondary issue to our GI right now. But I will be discussing that thoroughly as we get closer to making this decision. I had been looking to strictureplasty, and actually forgot about the possiblity of balloon dilation. Thanks for the suggestion, as I will also discuss that with the GI.

Melissa: You're right in that Prednisone isn't an option with fistuals present. They didn't really give us any other options either, It was just like "you need to go on Remicade of Humira, it's you're choice". The nurse didn't even tell her where the fistulas are going or if connected somewhere? Thank-You very much for your concern.

Gutsii: Thanks for offering to discuss your experiences further. I'll take you up on that. That's quite an imposition. Very kind of you.

Tom.

 

Hello,

Okay, so I will have had Crohn's for a year now in December. I was 18 when I was diagnosed. I tried pred and everything else and by April, I had enough. They told me my disease was mild and is technically 'indeterminate colitis' but leaning towards Crohns. It is definitely NOT mild as I was put on Humira only 4 months after my diagnosis. Looking back now, I wouldn't have done it primarily because I think diet and other things could have helped me since I hadn't tried that yet. But my doctor at the time was not the best. Now I have a wonderful doctor and she knows her stuff. She's one of the top specialists on the east coast and I love her. BUT anyway, so I was 18 when I started Humira, then turned 19 two months after I started. I am still on Humira, and I have to say that it is the best this that could have happened for me. Being 19, I am in college and being confined to the house was really depressing me. But now I literally have my life back. It started working for me within the first 2 doses. It's a really scary medicine to take, especially when you read the packets that come with the drug, but I honestly think the benefits outweigh the risks. If I hadn't gotten on the Humira, I would be a lot worse off right now. I consider myself in remission and have been for about 5 months. I still get my off days where I don't feel to great, but I think everyone with this disease has those. Anyway, what I'm trying to say is that I think youth is actually GOOD for this medication because of the lower immune system. Typically, young adults have a great immune system compared to those who are older, so I would be more afraid taking the medication if I were in my late 50's or 60's versus 19. Being older there are more risks involved with any sort of medications I believe. I have gotten sick a couple times when on the medicine due to the lower immune system, but only mild sinus infections or colds. Nothing antibiotics couldn't fix. Ido worry about the warnings they put on the label about bad infections, but I think that if you get sick and inform your doctor immediately and get the proper treatment, than you will be fine. Also make sure to never take your shot if you have an active infection. That is how those 'bad infections' occur because your immune system can't fight them if you're still on the shot. Sorry for writing so much, I am just trying to tell you that this medicine has made my life 'normal' again and I am so thankful. And I also wanted to tell this from the story of a 19 year old girl who is in the same situation as your daughter. Hope I helped relieve some of your worries!

I just thought that I would put in my two cents. I see one of the leading specialists/researchers for CD on the west coast. I have fairly major fistulas. She told me that not only does prednisone not help fistulas, it makes them worse.

I am currently on Humira and Imuran for my CD. I was told the likelihood of serious side effects for this combo wasn't significantly higher than for Humira alone.

It is a bit scary being on Humira, but it has helped. I've tried just about everything for my CD, including alternative medicine and diet. And I still have to avoid my trigger foods (which for me are mostly processed foods). However, for the first time in a long time, my fistulas are healing, and my bathroom habits are becoming "normal." For those of us that have cases that are tricky to treat, Humira can help a lot.

It's a lot better than surgery although I hate the bi-weekly blood tests that go along with my meds. If nothing else has been working for your daughter, it may be the right choice.

P.S. I just turned 27 and I was (mis)diagnosed with UC when I was 23. I was put on Humira three months ago. This is the first time that I've felt really well since becoming sick. I am in grad school putting in sometimes 50 or 60 hour weeks, and my health has held up so far.

73monte
I am so sorry your daughter is going through this so young. I was diagnosed 6 months after turning 18, by the time I was 19 I was on remicade. Best drug I have ever been treated with, 9 months later I had a rather large flare my doctor assumed I had developed an immunity towards the drug and proceeded the paperwork change for humira. Humira unfortunately did not work, I waited a few months to acceptance to use it, I used it probably for 4 months and decided I was having no quality of life even though my symptoms were relieved...

I am 21 now, I have been on different dosages of all the tablets switched from asacol to pentasa increased overtime from 50mg of azathioprine to now I'm on 200mg I also take entocort, nothing really helps me.

The tips I have come up with to manage my symptoms are lifestyle adjustments, stress management, being aware of your schedule and preplanning assignments etc (which is stressful itself at 19! Lol).

Anyway my point is, there are times where I am regretful I started these 'heavier' stronger medications so soon, but we do anything just to feel better at the time. I have recently been tested for the antibodies for the remicade (which I hear is still new) and I am thankful I am not intolerant, and if I am honest, I can't wait till my doctor says enough is enough lets go back to that drug.

I feel that was my miracle medication, and if I could go back to being 18/19 and would I change my decision of taking that drug to begin with, no way! Sometimes we need something more for that quality of life and at such a young age we have such high expectations of how high that quality should be... I've learnt to lower my expectations without forgetting I'm entitled to feel human :)

I hope the people on here have helped you both, I just wanted to share with you my experience and I would be happy to give you any more info you need! Although I am sure everyone on here has been more than helpful, they usually are :)

Good luck to you both. Please update us with any progress