New to Crohn's... Are we on the right track?

[AmyDG]

Hello. So glad there is a support group for Crohn's! My 16 y/o daughter has just been diagnosed with Crohn's. She started out in ER about a month ago with sever pain on her right side. We were afraid it was appendicitis. We did ultrasound, then ct scan which showed inflammation which landed us in the hospital for overnight stay with Flagyl (sp?). A bit later she had endoscopy/colonoscopy done. Could not peek into small intestine because too swollen for scope to fit. Took us a month to get appt for MRE. Just heard from doctor last night that there were signs that this is not her first flare up, and because of the location (ileum valve and ileum) her diagnosis is Crohn's. We have to make a decision very quickly about Prednisone versus an all liquid diet. Then we have to decide between 6mp and Remicade. I believe our doctor is leaning towards the Remicade. Since we are very new to this and overwhelmed, would love to hear if this treatment plan sounds typical. We are getting treatment from Vanderbilt Pediatric GI. Very scary to put her on these medicines. She has been taking a high dosage of Liallda that has eased her pain. Also, she has a full summer planned but all these frequent BM's are rough! Can you take Lomotil or something similar with IBD? Thanks in advance. I did not mean to write a book. Feeling very lost and worried.

 

[my little penguin]

No antidiahrreals
Check with GI
Welcome!!!
DS was dx at age 7
He is now 11 and he has tried all the drugs
Including prednisone/enteral nutrition / pentasa/6-mo/methottrexate/remicade and now humira

6-mp takes 4-6 months to work so it typically is started the same time as pred or EEN
Remicade takes 6 weeks to work again started close to pred start date.

Pred is easy -pill no fussing
EEN - lack of all food for 6-8 weeks
EEN works well and has no physical side effects
Some docs allow whole protein formula ( polymeric such as boost or ensure )
These taste good but hardest to digest out of the formulas
Semielemental would be peptide or peptamen.
These are an aquired taste - harder to drink orally but easier on the gut
DS used these at dx for his EEN and still drinks it now ( actually he is back on partial een - whole other story )
6-mp wasn't enough for DS /8 months of dosage changes and one round of EEN and later pred . He was switched to Mtx plus pred as a bridge therapy
No got there either so remicade it was
DS loved remicade after the first three loading dose infusions he felt a lot better
Got the day off from school and only thought of being sick during an infusion every 6 weeks
He got normal back it was great.
Pred long term causes
Cushing syndrome
Osterioporous
Glaucoma
Stops growth( important for my kiddo )
Risk of diabetes etc....
But works fast

Depends on the kid
Fwiw DS is back on pred right now as well only for arthritis flare


Good luck

 

[Mehita]

That sounds like a typical treatment plan.

EEN vs pred... Since your daughter is older, I'd give her a lot of say in this. EEN will require full commitment and buy in from her and it can be challenging at times. Pred is the drug we all love and hate at the same time. It will likely work quickly, but the side effects can be hard. Extra hair, moon face, mood swings, insomnia, etc.

Remicade vs 6MP... In retrospect I wish we would have done Remicade first. It works well for a lot of kids. You may want to check your insurance first. Some require you fail the lower meds before approving Remi. Another thing to check is her TPMT levels for 6MP. If she's not able to metabolize it, that will make the decision for you.

I'm sorry to hear she's going through this. The first year can be tough, but as you learn more and accept this as your new normal, it gets a little easier.

We have an astounding parents group here. Very supportive! Feel free to ask anything. There is also a teen forum that may interest your daughter.

Keep us posted!

 

[Maya142]

Hi and welcome!

I'd agree with Mehita - with a stubborn teenager, you want to make sure she is a 100% on board with a liquid diet, if she isn't, it won't work (too easy to eat at school or with friends). Some kids are able to drink their shakes and others use NG tubes. My daughter has never done EEN but has used an NG tube for supplemental EN to gain weight. It looks and sounds a lot worse than it is. She was able to insert it every night and get the calories she needed while sleeping. She took it out every morning and no one had to know.

We also went straight to Remicade (plus MTX) partially because my daughter has very severe arthritis and we didn't want to deal with severe Crohn's as well. Both my daughters have been on biologics for years without any real side effects (except some tiredness the day after the infusion). No infections or any of the other scary side effects you see listed. Many GI's are now using what is called the "top down" method - using drugs like Remicade first to get the disease under control quickly rather than starting with the weakest drugs working your way up to biologics. This is to prevent complications like strictures, abscesses etc. and also for kids to make sure they grow and gain weight like they are supposed to.

It's a very individual decision that is very tough to make. I can tell you that my husband and I have honestly never regretted putting my daughters on biologics for a single second - in fact, we are so grateful that they exist. Good luck!

 

[Sascot]

Sorry to hear about the diagnosis. If she is willing, the liquid diet is best option as it has less side effects and allows their body to heal and get good nutrition. My son did 8 weeks with an NG tube and it worked wonders!
As for 6mp or Remicade, 6mp takes up to 3 months to work and her symptoms seem to be flaring badly, so Remicade would be a quicker option to get things under control. Good luck

 

[crohnsinct]

Hi there and welcome! Both of my daughters used EEN and it worked very well. Brought them both to a quick remission. My older daughter went straight to Remicade as she was very, very sick. My younger daughter was put on Methotrexate but early signs look like maybe that isn't doing the trick so we may move to something else and I am hoping doc says Remicade.

EEN vs Prednisone? EEN is just as effective as prednisone in achieving remission but has the added benefit of mucosal healing with none of the side effects of prednisone and the added benefit of good nutrition (just don't read the labels). Also, some say prednisone could be less effective subsequent times it is used so I like to save it for later as much as possible. When presenting it to both of my girls I just asked them to try a shake. Then try one day, then two etc. It is not an all or nothing decision. If you say EEN you are not locked in to 8 weeks. You can change your mind at any time and decide to do the steroids. I think this helped my girls deal with the decision so much easier. They knew they had an escape clause and could use it any time. The way I figured it, even if they only made it through two weeks it was better than nothing. The whole time we started each day with, "let's see if we can do another day". If you concentrate on the 8 weeks part it becomes overwhelming.

We love Remicade here. The first 6 months after dx was the toughest. Trying to figure out dose and schedule etc but once we hit it right it has been smooth sailing ever since. She barely even thinks about her Crohns. As for immune suppression, she is the healthiest kid I know. Has survive stomach viruses, flus, colds etc going through our house and was on a mission trip with her youth group where half of them returned with mono but not her! Personally, I find the risk profile of Remicade the easiest to swallow as well. Add to it the convenience (blood draws at infusion so saves you a trip), the guarantee of compliance (no teenager invincible I didn't take my meds because I don't need them), and a clinic person laying eyes on your kid and talking with them every 6-8 weeks. I may change my tune when O goes to college in a couple of years but for now we are riding the Remi train as long as we can!

No experience with 6MP so can't help there except to say you could try it if you want and if it doesn't do the trick you can move up to Remicade. The thing with Remicade is, it is a long term commitment. If you use it and it works, you stay on it for as long as it works. There isn't typically the chance to go off and see if something else works and if it doesn't go back to Remicade. This is usually because of the build up of antibodies due to the break. Some people have been successful going back on but it isn't the norm. However, I am of the opinion if it ain't broke don't fix it and am very hesitant of taking O off Remicade.

Oh one other thing....the EEN or steroids are used until the maintenance drug takes effect. For some drugs that can be 12 weeks. Typically, Remicade starts working a lot faster. Soooo, the theory there is you may be on EEN or step down off EEN a lot slower on a one med over the other. For example, O was off EEN at 5 weeks and slowly tapered off but was totally off within 12 weeks. T was on EEN for 6 weeks and has a much more slow taper off because her maintenance med is just taking longer to build up to therapeutic levels. We are approaching 4 months and she is still only at 50/50 EN and food.

Sorry to bombard you with info. Good luck with your decision! Keep us posted!

 

[AmyDG]

I cannot thank you enough for all the replies and sharing of information. I was not aware how many younger children have IBD. I have a 2 year old son, and I am wondering now what his chances are of having Crohn's. The good news is that with his sister's diagnosis, we will be more aware if any symptoms show up.

I gave my daughter an Ensure to try last night, just to see how she would "like" it. She drank a few sips and said it wasn't too bad. The Prednisone may be our best option right now because of 2 upcoming trips, one to Puerto Rico with a school group. She is most concerned with how Prednisone will affect her weight and looks. I may talk to her doctor about what one of you suggested. Trying the liquid diet for as long as she can stand and then possibly going on the Prednisone for a lesser time period. I know EEN must stand for the liquid diet but what exactly does it mean?

Thanks for the assurances about Remicade also. Why are no anti-diarrheals allowed? Not even for a short time like a week long trip where bathrooms may be in short supply?

We have not had our big sit down office visit to discuss everything with our GI. He is wanting to wait until she has follow up scopes in June. You have been my angels! Thank you again. I hope I can help someone in the future the way you have helped me.

 

[Tesscorm]

My son was also 16 when diagnosed, actually right about this time as he was tentatively diagnosed May 16.

Ditto to all that was said above! Great group of very knowledgeable and supportive parents!

EEN stands for exclusive enteral nutrition (no food, liquid diet); PEN is partial enteral nutrition (so some food and supplemental formula). My son did both - EEN to induce remission - worked very well and put him into clinical (means no outward symptoms) almost immediately (he also had flagyl by IV for a week when being diagnosed). He also inserted the tube each evening (after a few days, took him seconds to do) and removed in the morning. He ingested his formula overnight and was allowed clear fluids during the day - broth, freezies, jello, 'clear' popsicles (ie no chocolate), gummies, etc. He did this for six weeks. After the EEN period, he moved to PEN for two years as his only treatment. This worked to control his symptoms and you'd barely know he had crohns but MREs continued to show some inflammation and we eventually moved to remicade to avoid any permanent damage (scar tissue). Biochemical remission is when there are no symptoms and tests also confirm remission (which is what you want to reach - clinical remission may be symptom free but damage may be happening inside).

Our GI preferred going straight to remicade, skipping the immunosuppressant meds (6mp, azathioprine, methotrexate) as he felt remicade was the best treatment available. I had also read that using remicade with the first two years of dx and as a first treatment showed it's best success so... He's now been on remicade for a bit over two years and we have had no issues...

Whether or not you choose to go with pred, I would suggest taking some shakes (powder would be easier to carry) on her trips. Just in case she is away and not feeling well, she will have the option to skip meals and just drink shakes. I did this for the first 2 or 3 trips my son went on after his diagnosis... Actually, he just came back from a two week trip with friends only :ack: and I had him take a large container of Carnation Breakfast powder (the only formula I could find in powder for some reason!) in his luggage. Although he's in complete remission now and it was unlikely that he'd have a problem, knowing that he would be eating different foods, drinking alcohol, different environment, etc. I figured it wouldn't hurt to have a back-up plan.

It is toughest at the beginning to become accustomed to everything involved with her diagnosis but, once treatment is underway and she's feeling better, all will get easier and smoother. :ghug:

 

[crohnsinct]

My daughter is a distance runner and with Crohns this causing a problem with D and using a bathroom so her doc has ok'd one dose of an anti diarrheal every other day as needed. BUT my daughter is in a very stable and deep remission. I would float it by the doc to see what they say.

A follow up scope just a month after dx? Why so soon? You would hardly have given the maintenance med a chance to work.

As for trips, O did take a week long mission trip while on EEN. She did have access to a refrigerator though and that is almost a necessity because those drinks room temp are vile! She said it wasn't to bad for her. Honestly, once she got past the first week of being around others eating it became old hat. She just packed her shakes (Boost and Ensure come in juice box containers from medical supply companies) and drank away. She also attended weddings, graduation parties, end of school day trips etc with her trusty pack of shakes. We found the Pack-It brand of lunch boxes perfect for the day trips.

You say she is concerned about gaining weight? I assume you mean the puffy prednisone moon face type weight right? Is she a healthy weight now? Just asking because many (not all of course because that would be too easy for all of us to figure out) of the kids at dx are underweight. EEN will provide much needed nutrition and as she heals she will be absorbing even more and will hopefully gain weight. It just won't be the "puffy" steroid weight.

T's disease is in the same location as your daughter's and her doc's steroid of choice was Entocort. He said it is more targeted to the Ileum and didn't have as many of the bad side effects as prednisone so maybe you could ask about it. Might be a nice compromise. We didn't try it so I can't give you any feedback. Perhaps someone else here can comment.