Advice needed please

[Olliesmum]

Hi all,
Sorry I'm new to all this but need some help please, been living a nightmare since Dec!
My son Ollie is 16 and has Crohns diagnosed Feb 2013 but been unwell since he was 5! Lots of scopes and finally a diagnosis. Ollie had a colonoscopy at the end of Nov and began to feel dizzy a few days later. I called the consultants secretary who assured me she would tell the consultant. Another week later, no call back and Ollie collapsed with abdo pain. We ended up on a ward with IV antibiotics and pain meds, 5 days in hospital then Ollie had 1st infusion of Infliximab and we went home. 2weeks later 2nd Infliximab infusion and next day in evening Ollie was in a lot of pain, another 10 days in hospital on iV fentanyl for pain and then constipated and needing movacol. Home again then back 2 days later in severe pain again. This has been going on for weeks now in and out, given opiates for pain then constipation and more pain. The latest now is Ollies stomach swelled up and he was in urinary retention! He was given a catheter which has to stay for 2 weeks, and an enema then we went home.
We are going out of our minds with worry and stress and Ollie is still off school and missing his friends and very miserable. Please can anyone offer advice x

 

[DustyKat]

Moved and bumped.

 

[Mehita]

Has an MRI or CT scan been done?

 

[my little penguin]

Has he seen a Gi or just a gp?
Does the to know about the opiates for pain?
Since that would be a catch 22.
Has he finished the loading dose ( 3rd dose of remicade )?
Has he ever been on pred or modulen ? To help until the remicade takes over .

Good luck

 

[Olliesmum]

Hi, thanks for your replies. Yes he had an MRI scan 3 weeks ago and it showed no blockages. Also we have seen the paed gastro and he is on a reducing dose of pred. He also had the 3rd Infusion last Fri. When Ollie is in severe pain they always reach for the opiates as a solution but I have stopped him having the oxycodone because it just causes too many probs

 

[Tesscorm]

I'm so sorry you and Ollie are having so many problems. Has the GI (gastro) told you what he thinks is causing the pain?

Something else you may want to consider is exclusive enteral nutrition (EEN) - this is a liquid diet which will give Ollie bowel rest and, is often used to induce remission. It has similar success rates as pred. Of course, you should do this after discussion with the GI but it may alleviate Ollie's pain while giving infliximab time to work. My son used EEN to induce remission and he had great success with it. There are no side effects and, in fact, will provide Ollie with all the nutrition he needs. These formulas are designed to provide all necessary nutrient.

There's additional info under the treatment section but, here's a link to a thread discussing Kids and EN.

http://www.crohnsforum.com/showthread.php?t=36345

And another with more info on EN

http://www.crohnsforum.com/showthread.php?t=39758

Many of the kids here use EN as a supplement as well - after reintroducing food, they continue with a lower dose of the formula to maintain nutrition.

Let us know if you have any questions.

:ghug:

 

[DustyKat]

Sorry for all the questions mum…

Where is his Crohn’s located?

Where is Ollie’s pain located and what it is it like?

What are the docs saying is causing it?

What sort of things has he been suffering with since he was 5 and has stricturing/scar tissue definitely been ruled out?

Dusty. xxx

 

[Olliesmum]

Hi Dusty,
Ollie's Crohns is located in the ileum and his pain is in Lower rt region.
The doctors are not saying much at all really, there are 2 consultants involved in Ollie's care and one was saying IBS, I am certain it's not however. His pain is so severe and he can't stop throwing up after he eats. Since he was 5 he's had abdo pain, bloody diarrhoea and swollen top lip on and off. Also perianal abscess.
There has been no mention of scar tissue at all. The consultant did say that during Ollie's colonoscopy back in Nov "the scope went a little further into the ileum than he would have liked" it does seem that all his recent problems started then x

 

[Olliesmum]

Thanks Tess, I've spoken to the gastro cons about a liquid diet and he is getting the dietician to call us. I'm hoping this helps... At this point I'm ready to give anything a try x

 

[DustyKat]

TBH it sounds like symptoms of stricturing (narrowing) in the ileal region. It would explain the pain and the vomiting after eating. Does the vomiting occur about 20 minutes or so after he eats?

An MRE would be a far better indicator of what is happening in his small bowel rather than a straight MRI. And as much as MRI’s are far better from a radiation point of view, as they contain none, a CT may be warranted if the MRI’s are showing nothing. The point being that CT and MRI’s each have their own advantages and CT’s can be better at visualising complications such as abscesses.

What are his bloods doing in regards to inflammatory markers (CRP & ESR) and Faecal Calprotectin?

Also when did he last have baseline bloods drawn that show his red and white cell counts?

If you are unsure then ask to have bloods done for the following, obtain your own copies of the results and then post them here. :wink: Perhaps you can ask the GP?

FBC - Full Blood Count (red and white cell counts)
LFT’s - Liver Function Tests
UEC’s - Urea, Electrolytes, Creatinine (kidney function and chemistry)
CRP & ESR - Inflammatory markers
Iron Stores
Folate
B12
Vitamin D
Magnesium
Zinc

The first three are baseline bloods. The rest need to be requested. With Ileal Crohn’s your son has the potential to have deficiencies in one or all of the those listed from Iron Stores down. Deficiencies will not produce the severe symptoms of pain and vomiting your son is having but they can and do feed into other issues like fatigue, nausea, prolonged healing time, aches, anaemia, general well being and many more. Perhaps these sort of things have been issues over the years too?

Have a look at vitamin and mineral deficiencies listed in the forum wiki:

http://www.crohnsforum.com/wiki/Vitamin-and-Mineral-Deficiencies

Dusty. xxx