Not a good day!

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I'm a southern girl
Not a good day for my little guy today:frown:. His number of bms has really increased and so has the amount of blood. He's having lots of tummy pain too and says he doesn't think he can eat dinner. It really seems like his symptoms are getting worse instead of better. He's been on Entocort since 3/2. His blood started on 3/18 which is the first he's ever experienced blood in the poo. When I mentioned it to his doctor on the 20th he said maybe it's moved further down from his ileum. Not sure what that would mean? I'll be calling the gi office tomorrow.

I'm still waiting to hear back on getting the EN going. Last I heard they are checking with my insurance to see if they cover it. It's been several days....shouldn't that be long enough?? I also told them that we would be doing it whether insurance paid or not.

If his crohn's is now in the colon area would enemas help? Should I ask to have him switched from Entocort to Pred until we can get going with EN? Or should I take one of the anxiety pills I got from my doctor yesterday :ysmile: and not get overly worried at this point?
 
Aw, hon I know what you're feeling...all too well. :heart:

If disease is now in colon then Entocort (released in small bowel and actually called "topical" by V's doc meaning it doesn't have far-reaching effects beyond its point of release) is not as good a choice as pred.

But do start the formula asap, ask your doc about a peptide based, that's the one that helped Violet. She could not tolerate regular Pediasure.
If he puts him on "Pediasure Peptide" (used to be called Vital Jr.) which is a much more "digestible" version, I have plenty and can send you a few factory sealed cases to tide you over if you cannot get it quick; just PM me.
 
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Aww Shelley, I'm sorry to hear he's not feeling well! :(

I hope you can start the EN soon! And that it works!

I'm still trying to figure out that video clip! :voodoo: My daughter suggested trying to record it on my phone instead of camera (thinks the camera video is too 'high quality' hence the large file size). Am going to try again...
 
Hoping things are going better soon...the insurance company has tied us up for a week before...you can always call them to help thing along :)
 
So sorry to hear your son isn't feeling good. If you can get on the EN ASAP I would avoid the prednisone if you can. We are not enjoying the prednisone side effects one bit and we are locked into taking it for the duration of the taper. From what I understand you can take pred for a short period of time without having to taper off of it. I think it is about a week you can take it without the taper. That might be an option. Having said all this about the pred it does work fast and although it didn't put my son into remission it did get him stabilized really fast. These are rotten choices to have to make aren't they!
 
Sorry your son isn't feeling too good. I would phone the insurance and chase them up, maybe if you tell them how sick he is feeling they will hurry it up. I always feel like I have to chase people up, nothing ever seems to be done quickly (think the IBD nurse's heart sinks when she hears my voice pipe down the phone!!)
Not sure if there's much point changing to pred if the EN is (hopefully) going to get going soon, although I also believe that a short course of up to a week doesn't need the taper. My son had it for 5 days with a bad cough and they didn't taper.
Good luck!
 
Shelley, I just remembered that the GI's office has samples (at least ours did) of different formulas, and the dietician there would offer them freely.
You may want to try different ones until you get the one that he responds best to, that way.

I've heard some ins won't cover unless formula is given by tube. I'd make sure the ins knows it shall be delivered via NG, that may make a difference.
 
So sorry you have to make so many difficult decisions right now. I just wanted to give you the other side of the Prednisone/EN choice. Johnny took Prednsione and his inflammation markers were normal within 6 days. He was on full dose for 1 month and then tapered after that. The side effects were bothersome but not bad and because we knew it was short term we dealt with it. I think if he needed to be on it again we would try EN because I don't want him on it too often because it will effect growth. But we were glad to get things under control quickly.

There are no good choices with this disease. They all have side effects and draw backs. Hopefully his G.I. will give you a good direction considering his specific needs.
Hang in there. ((((Hugs)))))
Tiffany
 
Well S went to bed without eating any dinner and had a piece of bread for breakfast. He cannot afford to lose any weight!! Had 1 bm before he went to school and says his tummy hurts a little. I asked him if he needed to stay home from school and he said that he would try to make it but that he might need to call me to pick him up. Makes me so sad :-(

For those that used pred, how much did they take and how long did it take to get the symptoms under control? What sort of side effects did your kids experience?

I also wonder how much stress plays a role in making symptoms worse. He has 2 days of intense testing at school (4 hours each day) which started yesterday. Yesterday has been his worst day ever with belly cramps and bathroom trips. He normally goes 3 times a day and yesterday it was 10!

I left a message on the nurse line first thing this morning. Hoping to hear back something quickly. Until then I will worry myself sick!

Thanks so much for taking the time to give me feedback. I appreciate it!
Shelley
 
Hi Shelley,

I'm sorry you're so worried... It's so heartbreaking for us to watch them when they aren't well! :(

I can't help you with the pred info but, as far as losing weight... until you hear back on either the pred or EN, try some nutritional shakes like Ensure, etc., even Carnation Instant Breakfast. (Sorry, can't remember if dairy is an issue for him though...) These will, at least, give him some nutrition and calories and may be easier on his tummy.

Stress does seem to affect a lot of people. Stephen stresses very little :) but, over Christmas, he had a number of projects, studying for exams, etc. and this was also when he felt 'off' and his CRP/ESR were higher (he also had some hockey injuries though??). But, at the time, I did think the stress contributed to it a bit.
 
Hi Tess!

I do think going all liquid would help but he is such a picky eater. In an effort to help him gain some weight, I got some Ensure and Carnation Instant Breakfast and he hated the taste of both. He can eat the Carnation if I freeze it in ice trays and then break it into pieces for him to eat. But he won't be able to ingest enough of it to maintain what he needs calorie wise.

We need EN asap. Trying to decide how long I give the nurse to call back before I text the doctor!

[[/I]
Hi Shelley,

I'm sorry you're so worried... It's so heartbreaking for us to watch them when they aren't well! :(

I can't help you with the pred info but, as far as losing weight... until you hear back on either the pred or EN, try some nutritional shakes like Ensure, etc., even Carnation Instant Breakfast. (Sorry, can't remember if dairy is an issue for him though...) These will, at least, give him some nutrition and calories and may be easier on his tummy.

Stress does seem to affect a lot of people. Stephen stresses very little :) but, over Christmas, he had a number of projects, studying for exams, etc. and this was also when he felt 'off' and his CRP/ESR were higher (he also had some hockey injuries though??). But, at the time, I did think the stress contributed to it a bit.
 
Mom2oneboy,

Johnny started on 40mg of Prednisone a day and he was 95 lbs when he started. He never had D he has constipation but had a toilet bowl full of blood the day he started and that stopped immediately. He felt wonderful the first 3 weeks. Almost euphoric. He sleep great, ate, played and felt better than he had in a long time. After about 3 weeks he started with side effects. He got the moon face. He had a hard time sleeping but was always tired. He had an anxious feeling, never quite at rest. He would frequently cry in the morning before school. I would ask him what was wrong and he would just say "I don't know". But was always fine by the time I got him to school and all day long. He would feel dizzy too but that was only when he didn't drink enough water. He got a rapid heart rate. This caused him anxiety but once we were aware it was just the side effects, it put him at ease. The taper was 6 weeks so he dealt with 7 weeks of side effects. It was hard but he felt much better than when he was in pain and sick and tired when his crohn's was active. He gained 24 lbs while on it and ate constantly. That made me happy. I know some people experience much more dramatic side effects.

I hope the specifics help a little, if I forgot anything please don't be afraid to ask.
 
UPDATE

His doctor called a bit ago and said he would like to put him on pred for 1 week to quickly calm things down until we can get the EN going. If we only do 1 week he will not need to taper. He said he will see what he can do to speed up the EN process and will call me back this afternoon. I think I'm good with this plan. I don't want him to continue suffering until we get up and going on the EN.

What do you all think?

Shelley
 
A quick course of Pred is a very good idea Shelley and you certainly can have a weeks worth without tapering. The doc has given you a very sound plan. :):):)

My son did the usual 8 week course of Pred and he didn't have any side effects with it. I was waiting and watching but they never happened. Obviously he was the exception rather than the rule!

Good luck! I hope the Pred knocks things on the head and the EN keeps it there!

Here's to long lasting relief and remission!...:cheerss:

Dusty. xxx
 
Sarah been on pred 30mg for 6 weeks, she is going to try and tapper again this week. The only side effect she has had so far is weight gain and some trouble sleeping. Sarah has gone from 44 to 50kg. I didnot believe gi when she said how quick this med would work,and boy was I wrong.


We had been discussing hospital and tubing feeding before this med.
 
Sounds like a good plan to me too. I haven't been around much and think you have probably already started the Prdenisone but FWIW O started Prednisone and Remicade 2/2. She tapered and was totally off Prednisone as of 3/12 but started bleeding right away. Went back on and back to normal. Started tapering and back to bleeding so up the Prednisone and back to normal. It works very quickly for O and she has no side effects except increased appetite which is fine with us because she needs to gain weight.

Good luck! Hoping you get that EN approval real soon!
 
I also wonder how much stress plays a role in making symptoms worse.

Stress is a HUGE trigger for many folks with Crohn's - it's definitely a trigger for my son Alex.

Is he on a 504 plan at school? If so, for these major testing days they can test him separately and under less stressful conditions.

It took several days for us to see the pred start working for Alex - we were in the hospital when they started him on it (first IV and then eventually moved him on to pills)...

Hope he feels better soon!!
 
With our son, we saw an improvement within a couple of days of pred. He was on it for about 6 weeks total. Great appetite and gained 10 lbs which was a good thing. Little irritable but not that bad.
Hope it helps your son quickly until you get the EN going.
 
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