What is Remicade?

[Lisamumofmeg]

Sorry to sound stupid! This is all very new to me.

My Daughter Megan was diagnosed 2 weeks ago after being hospitalised for 9 days with a perianal abscess in October, her other symptoms are relatively mild, constipation, bloody stools, mouth ulcers, headaches and fatigue, recurrent right side tummy pain since a very young age.

She has been diagnosed with Ileum Crohns with a 6cm narrowing (granuloma) not sure what that is, as I remember it, the consultant explained it like scaring ?

She was started on Modulen - and is currently on day 9.

My question is they haven't mentioned what will happen when the 8 weeks is up, will she have to take steroids? She is very concerned about this prospect.

I have noticed from reading other people's posts that most people are doing Modulen or another form of EEN along side other medication. A lot of posts mention Remicade, is this a form of steroid and one of choice with younger patients?

Thank you

Lisa x

 

[DustyKat]

Remicade is a biologic so is manufactured from a living organism. The difference between a biologic and a drug is that drugs are synthetic.

Biologics and immunosuppressives (Imuran/6MP/Methotrexate) are what are referred as steroid sparing medication. Steroids are the first line of treatment as is Modulen which in your case is being used instead of steroids (EEN is as effective as steroids at inducing remission). These first line treatments are meant to get you into remission and then the biologics and/or immunosuppressants keep you there for the long haul.

Now the thing you need to investigate is what exactly you are dealing with. If the narrowing is indeed scarring then no medication will treat that. If the stricture is not problematic once the Modulen is completed then they will likely take a wait and watch approach. On the other hand if symptoms persist then surgery is the only option.

Why the Modulen if it is scar tissue? They will want to take the inflammation away to see exactly what they are dealing with and how much.

If it isn’t scar tissue then you need to consult with the docs sooner rather than later to set a course of action before the Modulen is completed.

Dusty. xxx

PS. No such thing as a dumb or stupid question on this forum!

 

[Lisamumofmeg]

Thank you for your brilliant explanation..... I have done nothing but read studies and search forums for the last two weeks. Just when I think I know what I'm talking about I find something else lol.

They did a endoscopy and a colonoscopy. Which all came back good, other than some ulcers in her oesophagus, they then performed an MRI which showed a 6cm granuloma, as I understand this is a narrowing caused by scarring.

There was talk of giving her a Barium (I think that's what its called) the pill you swallow that takes images of your insides. Her consultant didn't want to do this as he was concerned it may become stuck and then she would need emergency surgery. Her blood and stools showed high inflammation markers, and so I think maybe this is where they based their decision to go with the modulen. She has no current symptoms, bleeding has stopped, fatigue has massively improved, no tummy pain all ulcers in her mouth have healed.

Should I ask for the Barium when she has finished the Modulen? Otherwise I don't see how they can be sure of exactly what they're dealing with.

 

[DustyKat]

Granuloma is inflammation so they may have been saying she has 6cm length of inflamed bowel. Inflammation will cause narrowing because inflamed tissue swells. What is critical here is how much is acute inflammation and how much is chronic. Acute inflammation won’t cause scar tissue when treated but chronic inflammation can simply because it has been there long enough for it to develop. If your daughter responds to the Modulen, which is it sounds like she is, then they will be able to determine if chronic inflammation is left via imaging so it is well worthwhile having it done when the Modulen is finished.

Barium and Pill Cam are two different things. Since they suspect there may be scarring then it would be best to have the Barium done first. I don’t know if they are truly referring to the older SBFT (Small Bowel Follow Through) or Barium Test as this has largely been replaced by a superior test called Enterography, done either by CT or MRI Scan. They may just be using the generic term Barium so check out with them exactly what they are referring to. If it does show continued stricturing (narrowing) then you shouldn’t have the Pill Cam done. If they are unsure a patency test can be done first that involves swallowing a dummy pill that will dissolve if it does get stuck.

Response to treatment will show a decrease in inflammatory markers and hopefully a return to normal levels. Faecal Calprotection is an inflammatory marker specific to the bowel so that is also a useful test to get done if they aren’t already using it. Just one thing to bear in mind though if scar tissue is present, it very likely won’t show in inflammatory markers so normal levels doesn’t necessarily mean no damage.

Dusty. xxx

 

[Lisamumofmeg]

Dusty, Thank you so much. I wish the doctors could explain things like you. Then I wouldn't feel like such a dim wit lol....

I have noted some things down, and will be bringing it up in her next consultant meeting.

finger crossed the inflammation hasn't been there too long. I guess we're just playing a waiting game now

 

[SupportiveMom]

Lisa I felt the same way you did when my daughter was first diagnosed. I found it useful to do some reading that wasn't on the Internet. There's a section on the forum the talks about different research and books and many people have given suggestions for reading material. Check to see if your local library has some of these books or your local bookstore. They can be valuable resources as well. The drug classifications and choices were by far the most confusing when first being diagnosed. Everyone here is great answering questions too as you have already learned.

 

[Patricia56]

I always suggest that parents and teens get used to thinking "BRAND" whenever they are discussing treatment plans with their doctors.

B - What are the BENEFITS of the proposed treatment
R - What are the RISKS of the proposed treatment
A - What are the ALTERNATIVES to the proposed treatment
N - What happens if we do NOTHING
D - Decision

 

[Lisamumofmeg]

Axelfl3333, thanks! In very limited and recent experience. Consultants are completely unapproachable and not particularly sympathetic to the emotional stress she is under. It was very much ' Here drink this for 8 weeks then we'll talk' We haven't been given an IBD nurse yet. I don't why. But I do find that her dietician is very helpful, positive and explains everything really well. He also pushed to get her some counselling which is great! So we tend to talk to him these days, rather than call the consultant. You're so right about Dr Google. I really worry that I'm causing myself unnecessary stress by reading to much and have had to put a stop to in the last couple of days. We need to focus on the positive and stop trying to predict the future as that is not an option with this disease. So today we have signed up the crohns/coltis 10k London walk and are going to put our efforts into fundraising whilst she is feeling well. Which in my opinion is a much better use of energy. Positivity is a good form of medicine!

 

[Sascot]

Hi, just wanted to welcome you. My son was also put on the 8 weeks of Modulen. It really did wonders for him. The Modulen was used instead of steroids - they will only use steroids if the Modulen doesn't work. My son is now on Mercaptopurine as his maintenance med. He also suffered from a peri-anal abscess and fistula so has had surgery on that a couple times. I find our GI nurses great. I do like the consultant but usually only see him at clinic every 3 months. Hope things get better.

 

[Axelfl3333]

This condition is so annoyingly variable it would drive you bonkers but you are going down the correct route to get back to normal.exercise seems to help,get your daughter to keep a food diary and see what affects her,greasy,oily over processed junk are bad,treat salad and veggies with caution for a veggie fix homemade soup with the veggies we'll cooked and or blended are fine,fish,chicken generally ok.i find curries are o.k just not to spicy.medication wise be regimented about time if it's 5pm it's always 5pm.
Warning leaflets with medication try not to read them as the side effects are rare but the worry from the leaflets aren,t.
All the best good luck
P.s invest in a George Foreman grill for bacon,sausage,steak fix getting rid of the oil really helps

 

[Lisamumofmeg]

Hi, just wanted to welcome you. My son was also put on the 8 weeks of Modulen. It really did wonders for him. The Modulen was used instead of steroids - they will only use steroids if the Modulen doesn't work. My son is now on Mercaptopurine as his maintenance med. He also suffered from a peri-anal abscess and fistula so has had surgery on that a couple times. I find our GI nurses great. I do like the consultant but usually only see him at clinic every 3 months. Hope things get better.

I just wondered how your son tolerated Modulen. Megan has been experiencing some diarrhoea, which isn't normal for her. Its not something she has had as a crohns symptom, yet. Would you say that diarrhoea is normal with the modulen? x

 

[Tesscorm]

When my son did six weeks of formula only, he had diarrhea for all of the six weeks (no urgency or pain though). We were told to expect this and that this sometimes happens (ie liquid in, liquid out). I think most of the kids here have not had this happen, however, as per my son's experience, I guess some do experience this side effect. For my son, the d disappeared as soon as he started to add regular food.

If she's having no other problems, it's probably fine - but, as always... if you're concerned, do speak to her GI.

 

[crohnsinct]

My daughter had some diarrhea half way in to her EEN. I called the GI's office and like Tesscorm they said absent any other symptoms she was fine and she was. D passed after a few days.

 

[Sascot]

My son didn't go any more often but it was a lot looser than normal. The nurses said that was normal since he wasn't eating anything solid. The toilets did need a bit extra cleaning :lol2:

 

[Jmrogers4]

Same here, diarrhea or very soft loose stool while on EEN. Firmed up as soon as food was added back in

 

[Lisamumofmeg]

oh good! That's put my mind at rest. I will mention it to the her dietician when I speak to him anyway. I was worrying she'd developed a new symptom. Thank you everyone.