Advanced Crohns - need opinions/thoughts!

[BostonGirl83]

Hi! I was recently diagnosed with Crohns in August. I had an abscess so I went on cipro and flagyl first, then started entocort and 6mp. 10 days after starting the steroids and 6mp, I started having really bad pain, bloating, etc. I went to the hospital last Thursday and have been here since. I have a structure now and a few fistula tracks. I've been on the antibiotics and prednisone for five days now and they are going to start me on Remicade today. I've been through a lot in the past few days. I had to have an NG tube for 36 hours, had a picc line placed (that they said I'll have to go home with, bummer), and now my doctor says that I may need to do a liquid diet for a FEW WEEKS!! I can't imagine that but of course I'll do whatever I have to. I know my bowels have to rest and all. Has anyone else been through this? I'm on the verge of needing surgery so they are trying to see if the Remicade will hold that off for as long as possible. I'm in a really bad spot emotionally with all of this as I have a one year old at home and I'm just wondering how I'll handle all this over the next few weeks. Any insight or support is helpful.

 

[Clash]

So sorry to hear of all you are going through. It's such an overwhelming illness at times.

My son started on Remicade at dx. He then had to shorten schedule up the dose and eventually add methotrexate.

He had a small bowel resection in August of last year and moved to humira. We just added entocort and have a scope coming up to see if he still has active disease.

He hasn't had to do a liquid diet alone but has done EN enteral nutrition for weight gain for surgery. He used an ng tube which he placed every evening, he took in 2700 calories of formula each night then pulled the tube before school. He did this for about 3 months.

There are a number of people who have done EEN exclusive enteral nutrition, in the place of steroids (has equal efficacy without all the nasty pred side effects) for 8-12 weeks with or without the ng tube.

I'll tag some of the ones whose kids have done it...Tesscorm my little penguin jmrogers4 Maya142

Hope you are released soon and the remicade works it's magic

 

[Jmrogers4]

Yes, my son did EEN for 8 weeks and then started on remicade. Surgery was mentioned a couple of time but for us remicade was enough to bring about remission.
Sometimes surgery will depend on if it's inflammation or scar tissue causing the stricture. Inflammation hopefully EEN and Remicade will be enough to knock it out, if it's scar tissue unfortunately there's not much that will help besides surgery or possibly dilation depending on how bad it is.
EEN wasn't bad once he got used to and the fact it made him feel better made it easier to stick to (He was 14 at the time)
For what it's worth my husband also has crohn's and will go on a self induced liquid diet if he feels like a flare is starting.
Good luck and I hope you are feeling better soon

 

[my little penguin]

My kiddo has been on een twice
First time 9 weeks
Second time two weeks before he switch to partial en with crohns exclusive diet
That was 6 months ago
He drinks peptamen jr all orally
Not too bad just hard over the holidays
Use a straw get it cold but not frozen
Chew crushed ice for oral motor skills to continue

Ds is currently on humira plus mtx
Plus partial en ( 80%) with 20% from crohns exclusive diet

Good luck

 

[Maya142]

My daughter hasn't done EEN but has done supplemental EN for weight gain. Initially she drank Peptamen but it doesn't taste good and she had trouble drinking enough to gain weight. She then used an NG tube for overnight feeds. She'd insert the tube at night and hook herself up to the feed and then removed it in the morning. She liked it that way because no one at school had to know.

Now she says she prefers a tube to drinking the shakes and will never go back to drinking!
Inserting the NG tube was actually pretty easy after the first two days. It looked very intimidating and she was very nervous but it was fine. Her nose and throat were sore for the first few days, so if you're uncomfortable with the NG tube now, know that it may not last forever -- hopefully it'll get better.

Good luck with whatever you choose!