Desperately waiting for Crohn's treatment

[Tony Ellis]

Hi all, firstly thank you for accepting me into the group. My 22 year old nephew was, after a long period of time, finally diagnosed with Crohn's back in January this year. The NHS waiting list for the diagnosis was horrendously long so I decided to pay privately for him to have the endoscopy and colonoscopy which confirmed Crohn's. He was immediately put onto a high dose of steroids and referred by his GB to the local NHS IBD Clinic for ongoing treatment moving forward. However, he is still waiting after over two months, suffering daily with chronic pain and sickness, having lost over 3 stone in weight in over 6 months. My nephew has now finished the steroids and is on no medication whatsoever, waiting to hear from the IBD team for his first appointment to work out how to progress from this point with medication that could (hopefully) help him live a near normal life as possible and pain free. We tried to phone the IBD team to enquire as to how long he may have to wait and left a message for them to return our call, but so far we haven't heard anything.

My question is, how long should my nephew have to wait for the start medication? Also, has anyone any recommendation as to what meds would be the best at this early stage. Any advice would be very much appreciated. Thank you...Tony

 

[valleysangel92]

Hello, I'm sorry to hear that your nephew is dealing with this. Waiting times are a big problem in the UK and unfortunately it seems there isn't going to be much improvement for a while.

Do you know where your nephew has been referred to? They may have I B D nurses available who would possibly be able to help speed up getting your nephew an appointment with a consultant. Waiting times for treatment will depend on what type of treatment the consultant advises, some medications need blood testing and Tb screening
Before starting treatment and some take time to set up because they involve gong to a
Hospital for an infusion.

If the consultant feels like a tablet medicine such as azathioprine will suit your nephew then
He should be able to start that within a week of his appointment (how long the blood tests
Could take). Azathioprine is an immune suppressant and is often used as a first medicine for crohns due to it being mostly well tolerated and having lower risks long term. If your nephews consultant feels a more aggressive approach is needed then infliximab or
Adalimumab may be offered. Infliximab starts as an infusion so could take a few weeks to set up, adalimumab is a self injection and would involve someone showing your nephew how to give himself an injection at home.

It is hard to give a specific recommendation as crohns is so patient specific but he definitely
Needs a long term treatment. I would also recommend asking the gp for some anti-sickness
Medication to help with the nausea, good symptom management can really help make things more bearable while waiting for treatment. I would also recommend asking for a range of vitamin / nutrient levels like iron, vitamin d, B 12 and folate as it sounds like he
May not be absorbing much nutrition.

 

[Tony Ellis]

Hello, I'm sorry to hear that your nephew is dealing with this. Waiting times are a big problem in the UK and unfortunately it seems there isn't going to be much improvement for a while.

Do you know where your nephew has been referred to? They may have I B D nurses available who would possibly be able to help speed up getting your nephew an appointment with a consultant. Waiting times for treatment will depend on what type of treatment the consultant advises, some medications need blood testing and Tb screening
Before starting treatment and some take time to set up because they involve gong to a
Hospital for an infusion.

If the consultant feels like a tablet medicine such as azathioprine will suit your nephew then
He should be able to start that within a week of his appointment (how long the blood tests
Could take). Azathioprine is

----------------------------------------
Hi, valleysangel92...many thanks for your reply. My nephew has been referred to Tunbridge Wells Hospital, and although we have checked that his referral has been received, they don't seem able to give us any idea of how long he will have to wait. It is interesting to hear that there are IBD nurses that could help him in the meantime, but does he not have to be seen first by the IBD clinic?

Thanks again for your kind advice, the family are very concerned about him, so any advice available is always appreciated. Tony

 

[valleysangel92]

The nurses probably wouldn't start any treatments without your nephew being seen but will understand the urgency of getting seen and may be able to pull strings or move him up the waiting list based on his symptoms. They may also be able to find out what consultant your nephew will be under and may be able to give you details of the secretary.

In my experience going through nurses and consultants secretaries works better than going
Through the general appointment lines.
Your nephews situation in terms of symptoms sounds very like my
experience so I can totally understand how distressing it must be . If there is anything else I can help with then please feel free to ask.

 

[Tony Ellis]

Thank you so much for all your help, it has really helped giving us some idea of what to do next. I will suggest the anti sickness meds to him (via his GP) and also the vitamin supplements sounds a good idea. Unfortunately he has started to lose his hair...it's become noticeably thinner over the last couple of months, so supplements may indeed help him....I do know that he is on Vitamin D and calcium, but agree others could help.

I am so glad I joined this forum today, I've learned more now than the days I have spent on the internet trying to work out what to do next!!

 

[Andersen007]

There is definetly a lot your nephew could do while waiting to be admitted to the IBD center. I am in a similar situation myself, and have gone pain, and practically symptom free by strictly following dietary approaches. There are many that he could try, ideally with a support with a dietetian, but there are a ton of materials online - thats how I did it. Exclusive Enteral Nutrition is one of the more successful and radical ones, unfortunately the more palatable polymeric formulas here in Europe haven't worked for me (I am assuming due to being based on milk proteins). There is also the CDED (Crohn's disease exclusion diet) and SCD or the newer version, IBD-AID, that according to studies are able to provide symptomatic relief comparable to steroids, and I personally had a lot of success with SCD - but I had to go even more restricted than the diet allows. I am going on private blood tests to monitor for malnutrition every few weeks, which fortunately I do not have - this is why ideally a doc or research could help a lot. I am also on VSL3 probiotics and taking full spectrum curcuma, and hard to say how much they have contributed to me getting better - but I have a feeling VSL3 helped a lot.

Wish you good luck and definetly continue pushing to get in the center.

 

[my little penguin]

So exclusive enteral nutrition is used a lot in kids instead steriods
It means formula only (no solid food )
Most over the counter formulas work such as forstips (??spelling) or modulen in the UK

many kids in the UK and US use it to obtain remission while waiting for maintenance meds such as aza or infliximab etc to kick in
Might be worth asking the gp or ibd nurse if that could be started while you wait

it needs to be a nutritionally complete formula since it’s sole nutrition (again Ask his gp)

not a doc just a mom
Whose son used exclusive enteral nutrition more than a few times over the years
It’s hard but does heal the gut while on it at least somewhat

https://www.stgeorges.nhs.uk/wp-content/uploads/2022/04/NDI_EEN_LP.pdf
https://pubmed.ncbi.nlm.nih.gov/35623822/

https://pubmed.ncbi.nlm.nih.gov/29398336/

https://clinicalnutritionespen.com/article/S2405-4577(22)00231-5/fulltext

 

[Tony Ellis]

Thank you all so very much for all your help and advice! I have just learnt today that it could be up to 10 months before Daniel gets seen by the IBD clinic!! This is disgraceful as he is in so much pain with no meds, our NHS is broken due to lack of funding! Is it possible to go private to get meds, I guess this will cost lots of money? I just cannot face seeing him in so much pain for the next 10 months Any further advice would be gratefully received! He is loosing his hair, can anyone recommend what vitamin supplements may help? Thanks again friends, we are learning so much about Crohn's from this amazing forum!

 

[Carabop1]

Hair loss can be caused by iron deficiency. If he is having bleeding maybe try an iron supplement but consult gp or nurse first.

 

[Tony Ellis]

Thanks Carabop! I will follow that up

 

[my little penguin]

In the US so not sure how the system works over there but if the private is prescribing formula only -EEN to get him through until he sees the nhs ? might be just cost of formula ?
Or maybe someone know if private docs prescribe the actual meds are they still covered by nhs as well ??