Advice please

[Mumof4]

Hi I posted this in the treatment forum but didn't get any replies so thought I would post here as well in the hope someone can help.


Help, Advice needed
My son aged 12 was diagnosed with crohns a few weeks ago - he is on week 3 of a modulen liquid diet and was (we thought) progressing well. He has lots of energy, bowel movements were decreasing in frequency and becoming more solid. He had very little pain. Today however he went to the toilet and basically just pooed blood - quite a lot of it! (although he has had some bleeding with BM before this has not happened before). He then a bit later had a lot of diaorhea. Does this mean the crohns is no longer controlled by the nutritional therapy?

In addition his TMPT result is back and is low - 45. He was due to start azathioprine this Thursday. Does this mean he shouldnt or it should be a lower dose?

He is seeing his GI on THursday, I was able to speak to him today and he advised that if bleeding continued he needed to be seen on the ward tomorrow instead but if not then they would see him on Thursday and do his bloods to check his haemoglobin levels.

 

[jordan29]

Hi mum of 4 welcome to the forum it is a great place for help and advice I no they started my son he is 15 on the modulen liquid diet when he got dx in June he was only on it a week and ended back in hosp his esr went from 17 to 89 in the matter of days where is your sons crohnes situated jordans was just in his colon an when he got admitted back to hospital the consultant said sometimes the liquid diet doesn't take the inflammation down if it's in the colon but it's the first step they take in the uk Jordan was then put in pred 40mg he is now down to 5mg every other day and started azathioprin started on 75mg then uped to 100mg hang on in their mum it just might take a bit time to get the right meds and dose right I no we all freak out when we read about all the side effects of the drugs but it's the best thing Jordan has done fingers crossed they can get it in control quick xx

 

[Mumof4]

Hi jordan29, thanks for your reply. I guess maybe I have just been a bit unrealistic. I had thought that the liquid diet was helping him and then we would move onto azathioprine and it would all be under control. He had been doing so well, he can drink the modulen no problem, his pain was gone, he was putting on weight etc. He has it in his oesophagus, stomach, colon and it is particularly bad in the ileum. He also has fistulas near the anus. Does that mean it is worse because it is not just in his colon? I have been reading and reading but still feel there is so much I don't know. They are trying to avoid steroids because he had a pocket of fluid in his abdomen which they said can be a contraindication for steroids. He is still getting diarrhoea today but no bleeding. He is duet go back to school on 1 st September and I was hoping it would be all under control by then. I think I really need to get my head out of the sand....

 

[DustyKat]

What is the pocket of fluid they are talking about?

Dusty. xxx

 

[muppet]

If he's still bleeding you may want to ask your doctor about prednisone. I've read/heard that modulen can be very effective in inducing remission but I'd be very concerned about that bleeding if it were my daughter.

 

[Mumof4]

What is the pocket of fluid they are talking about?

Dusty. xxx

They saw a pocket of fluid to one side of his bladder in a scan ages ago. At the time they said they didn't know what it was but it was not significant but our GI says it is an indication of inflammation in the bowel and can mean they shouldn't use steroids, not sure why, I should have asked.

 

[Mumof4]

If he's still bleeding you may want to ask your doctor about prednisone. I've read/heard that modulen can be very effective in inducing remission but I'd be very concerned about that bleeding if it were my daughter.

Hi Muppet,

Thanks, I am concerned but they are trying to avoid steroids because of the pocket of fluid. I will discuss it with the GI tomorrow.

 

[muppet]

They might be worried about some sort of infection, but I'm only guessing. I've never heard of that.

 

[Mumof4]

I don't know either muppet. I do know he has fistulas and had wondered was it fluid leaking from those. Still at the start of a steep learning curve here!

 

[muppet]

Wow, fistulas at that young age.

Has the doctor mentioned Remicade to you for closing the fistulas? Is he expecting the AZA to do the job on those? I admit I have only marginal experience with fistulas. I've got one, but it leads to the outside and is quite permanent after some bad surgery. I'm not sure what goes on when they lead to internal areas (even though I suspect I've got one in my pelvis.)

 

[Mumof4]

I don't know yet what they intend to do with them. When he had his colonoscopy the GI came and showed me a drawing he had done which showed where he had ulcers these were dotted all over his oesophagus, stomach and colon and there was a bunch of them in the ileum which he said was particularly bad then he pointed to some wiggly lines he had drawn a short distance above the anus and said they were fistulas. He admitted him immediately and said he wanted to start top down therapy ASAP beginning with the liquid diet which was started the following day. They seem to be concerned about getting him into remission first, as he has lost a lot of weight and was very poorly and in a lot of pain. They haven't mentioned the fistulas since. I am drowning in information and yet don't seem to remember to ask the right questions.

 

[muppet]

Remicade is a scary, heavy-hitting drug with a lot of potential complications, but it can both induce remission and close fistulas. It's very expensive and in the UK I'm not sure what the process is for getting approval for it via the NHS.

It worked very well for my daughter initially, it took her from bleeding to death in the hospital to home the next day, but after 3 doses she reacted quite badly and is no longer able to use it.

 

[Mumof4]

Muppet do fistulas now mean he is going to get a lot worse or suffer more later because it started young? The fact that it is throughout his system also worries me, does that mean it is worse than if he had it only in his colon? I have so many questions but matt is with me when I see his G I and I don't want to ask in front of him in case I scare him.

 

[muppet]

I'm sorry I didn't mean to imply anything about his age and the fistulas. It's just that I've never encountered such a young patient with them, but I'm not a doctor and these support group type sites are new to me. I only have my own experience with me and my daughter, really, to go on. It took me 19 years with Crohn's to develop fistulae, but I know that's not the case for everyone.

It's definitely something I'd pursue aggressively if my daughter had them (thankfully she doesn't for now).

 

[Mumof4]

Thanks muppet, I can see from this forum that your daughter has had a really hard time. I do hope she is as well as can be hoped. She is lucky to have you fighting for her. Its okay you didn't imply anything it is just something which I have already been wondering and thought you may know through your own experience. I will ask a lot of questions tomorrow and try to phrase them so I do not worry Matt but get some answers.

 

[jordan29]

Hi mum of 4 sorry I didn't reply straight away I am a little like you I am still learning about this horrible disese what our children have been delt with Let us no what matts consultant says tomorrow I am sure they will be able to get matt on to some meds that will help without affecting the pocket of fluid have they done any more blood test to see how matts inflammation is going on the liquid diet x

 

[DustyKat]

Hey Mum,

Both of my children have fistulising Crohns but it is contained to their ileum.

Is the pocket of fluid to his right of the bladder?

This is just my two cents worth based on what I have been through with my son over the last 8 months...

The fluid sounds suspiciously like and abscess to me that may well be originating from his ileum, that as you have stated is badly diseased. I just don't know that an elemental diet is going to work for your son given the extent of his disease and the apparent complications he already has, those being fistula's and perhaps a queried abscess.

If this is the case then Remicade, or the biologics generally, can be very successful at closing perianal fistula's but they are notorious for having little effect on fistula's originating in the ileum.

To me the best course of action for your son, assuming my assumptions are even close to being correct, would be...

Prednisone and Flagyl to get the inflammation under control and at least take it from an acute to chronic phase. The fluid pocket (?abscess) needs to be dealt with, drain it and then see if it formed as a result of fistula from the ileum, another antibiotic should be introduced at this stage. If it has then unfortunately surgery to remove it is most likely your only option. Then start or continue with a biologic to treat the perianal disease if that remains a problem following the above treatments.

My son had two fistula's and abscesses originating in the ileum. This did not prevent him from having a course of Prednisone and also IV Hydrocortisone when hospitalised, it was necessary to bring his inflammation under control and prevent further damage. Both of my children have had surgery and my daughter has now been in remission for 5 years and my son, although very early days, is in remission and I am hoping it stays that way for a very looooooooong time!

Reading over a previous post...stomach ulceration may contraindicate the use of oral Prednisone, not sure in your son's case though.

Thinking of you, :hug:
Dusty. xxxxxxxx

 

[muppet]

Absolutely agree with Dusty. Wow, I was commenting half asleep or something to not address the abcess more directly.

 

[Mumof4]

Hi guys sorry only replying now. The pocket of fluid was visible in one c t scan but they did another and it is not showing now so they think it is gone. We were at the GI today. Poor Matt broke down and cried his wee heart out, he is having a bit of a bad day coping with it all. They have decided to refer him to a psychologist to help him come to terms with it , not sure how I feel a about that. We are sticking with the modulen diet and he starts azathioprine tomorrow, apparently although his TPMT is low, it is not too low to use this drug. He weighs 34kg now so he will start on 75mg.

 

[Mumof4]

Sorry I meant ultra sound not c t scan. We were also at the school today, I explained all and they were very nice, said they would give him a toilet pass so he could get out of class. But then said some toilets would be locked and he may have to go down a floor to find one! Tried to tell them he needed open access to all toilets, but they said they have dealt with these things before etc. Anyway the GI is going to write to them and has said the GI nurse will go in a do training if necessary, so that is good.

 

[jordan29]

Hi mum pleased the pocket of fluid has gone it is a lot for our poor kids to take in one min they are leading a normal life then gets hit by this horrible monster that's what they started Jordan on 75mgof azathioprin then raised it to 100mg and he is doing really well fingers crossed everything goes well for matt xx