Staying Positive! But feeling low...

[DanD_D]

Hi Everyone -

First off! Just got to say, it's great to have found such an incredible amount of individuals on this forum. Taking the opportunity to read through so many stories, helpful remedies and even seeing how you guys can vent off each other, has really given me hope that I can get myself back to normal again.

Anyway, My name is Dan, i'm a 22 year old University Design student - diagnosed with Crohn's as of last month. However, it's been an underlying problem since late 2013, in which, I was informed I had 'IBS'. Although - as the time past and my pain got worse - with my visits to the doctors becoming LESS frequent because they would just tell me to keep taking my medication, then trying me on a different one & so on & so on... I lost faith in my local GP and with the pain becoming more severe abdominally & weight loss becoming a real issue, that I got admitted into Hospital for a short spell. They've since got me on a gradual decrease (Week by week) dose of Prednisolone - I'm currently on 25mg per day, along with paracetamol & codeine (To try & help me sleep through flares).

So, i'm relatively new to this whole new aspect of my life! The new diet is great, but hard to stick to - especially when you were used to being able to eat anything without pain (Well, 3 years + ago). I'm quite under-weight, in the top end 8 stone bracket despite being over 6ft 1"! I'm like a stick with legs :')

I'm trying to stay positive & put on a happy face for friends & family - but deep down I am concerned, I know this is life now - anxiety has been a relatively new problem after a rather stressful year of working 6-7 days a week, with two jobs and no money to show for it. I'm on the verge of moving back to London for my final year of University next week and I've still not nailed down any solid helpful pain remedies for my late night wake-ups from these flares, so i'm tired during the time I would like to active.

I feel constantly like I should be doing something - despite knowing I have to allow my body time to rest and feel guilty for not doing more with my days. I have such conflicting emotions at the moment, when usually I'm a pretty upbeat guy! Thats how my friends see me.

So - thats pretty much me! Happy to answer any questions & even more excited to perhaps hear any helpful tips & tricks for stopping or easing flares during the night. Its going to be very helpful considering i'm moving back into a very noisy student environment as of the 17th Sept!

Thank you.

- Dan.

 

[Clash]

Welcome to the forum. Sorry to hear of your struggles.

Did you start at 40 mg of pred and weaned down from that? Has it helped at all with your symptoms? Often pred is the drug we love to hate because it quickly quells inflammation and symptoms but has all those nasty side effects. Generally, with a pred taper the symptoms subside quickly with starting the dose but as you wean down symptoms may start to reappear. Often, when this occurs, the GI will go back up on the pred dose and taper more slowly.

Also, pred is great at quelling inflammation for most but some don't get that benefit. Either way, the GI should start you on a maintenance med since pred is great while on it but inflammation quickly returns once you've tapered off.

Take a browse around the forum
There is a young adults sub forum and plenty to peruse in the treatment forum and the diet forum.

I hope you find relief soon

 

[ronroush7]

Welcome to the forum. Try to sneak some rest in any time you can. I hope that the doctor can get you on the right mixture of medicines to get you in remission.

 

[DanD_D]

Thank you for the responses guys! Great to hear from you. I started on 40mg (8x 5mg individual tablets per day) alongside Omeprazole to line my stomach. Haven't felt any major benefits - I still feel incredibly bloated post eating, alongside the usual flare up's throughout the day - ranging from 5 to 8 on the pain scale. The 8's usually come at night unfortunately. I've also got multiple small & large ulcers lining my bowel with a stricture across the entrance to my small bowel, scar tissue & a distortion.

I think surgery might be on the cards a couple of months down the line - however, anything to get the pain to a manageable state first would be great. Thanks for the advice, i'll check out the forum sections you suggested!

Take care.

 

[steph_irish]

Hey dan I'm steph. Like you I've struggled with this disease for sometime.

I was officially diagnosed in 2013 and unfortunately with the NHS they will try every cheap drug possible.
I agree with clash, pred is the drug we love to hate.
It is the only drug that calmed symptoms but for them to reappear once the dose is lowered.
It allowed me to eat and enjoy food again.

I've tried most drugs now and like you I also had a stricture, 2 to be precise.
I am in the severe category of crohns but but last January I finally met the criteria for infliximab infusions and they have given me my life back.

Every person responds differently to various drugs, it is a case of trial and error to find which one you will respond to best.
Have they prescribed anything else to try and control your crohns?

They must have something in place for when you come off the steroids.
Please keep me posted on your progress

Kind regards
Steph

 

[ronroush7]

Agree

 

[DanD_D]

Hi Steph!

Thank you for replying to my post and sharing your experience of Crohn's disease with me - I hate to hear that anyone is going through such pain but there's strength in numbers and reading other people's stories & coping mechanisms has really helped with my own diagnosis.

I talk to a Gastro-nurse at my local hospital on a weekly basis - she's aware now that Pred is really not having the desired effect and hoping she can get my meeting with the surgical & gastro department team moved forward - gotta love waiting lists! But in all honesty - the NHS has actually been very helpful & the Nurses/Doctors have been very friendly.

Its looking more like I'll be having surgery towards Christmas time - hopefully during the break between semester's of my final year of University; its all got to fit in there somehow! :')

My local GP also prescribed me Co-codamol for the pain at night (15 mg per pill) which seems to be helping with the sleeping. HOwever, still experiencing severe pain during my main evening meal, despite eating a low fibre diet. I've been told i've got between 15 - 20 cm of scar tissue to be removed, alongside multiple ulcers.

Its going to be a busy few months I believe! But keeping my chin up.

How're you doing now? Glad to hear the Infliximab infusions helped!

All the best.

- Dan.

 

[ronroush7]

Sending support, Dan

 

[steph_irish]

Hey Dan,

Yep strength in numbers as they say, we'll go with that one. Sounds positive.
Food was a massive issue for me too, the pain was unbearable. Hence almost becoming anorexic (not by choice), trust me it is a very cruel disease as I love my food.

My infusions are going very well and I now have my life back. Still get tired and like you I felt guilty for it because I've always been active.

So surgery at Christmas?
What a lovely gift crohns has given u

I hope you find some relief soon,
By the way have you thought about the elemental diet?
It much easier than processing even low fibre food.
Give you complete bowel rest for 8 weeks. You would have to be referred to a dietician to get it

Its just an idea, all the best

Steph :dusty:

 

[DanD_D]

Hi Steph -

Yeah I love food - never seemed to gain much weight from it, despite having a big appetite, always thought it was a case of fast metabolism! That would really hit me later on! :ylol: But It would seem (and having talked to the gastro-doctor at my hospital) it could always have been a case of both. Where my body has not been taking in the right nutrients for steady growth - so i'm a little light on weight at the moment, never got above & beyond the 10 stone mark, not through lack of trying!

Mixed in being quite tall & you've got yourself one skinny looking fella! Glad to hear the infusions are working - these are all new things to me, new terminology for me to look up & research. What a gift, eh? When most guys are asking for an ipad, i'm sorta hoping Santa brings me a surgical procedure!

I feel good when I smile about it - positivity has been a big help - despite having bad days.

Funny you should mention the liquid diet - I'm meeting with a dietician in the morning, however - an elemental diet isn't really practical despite its possible benefits. Since I'm not going to have ready access to the food supplements on a weekly basis; which would be mean alot of travelling (Expensive in the UK on the trains especially from London outbound/inbound).

I'm keeping things low fibre and that works for me I guess - I can put up with the pain If I know that surgery is just around the corner or something better, y'know?

All the best to you too Steph

- Dan.

 

[steph_irish]

Hey Dan ,

Yes positivity is key, even though we have some pretty crappy days and think WHY ME?
but it does become new normal which means we make the most of the good days and deal with the bad ones:thumright:

How bad to wish surgery on someone, but I hope Santa brings you your Christmas wish :ylol:

I find some of the posts on here can be quite amusing from time to time its good to laugh at crohns sometimes with some of our funny encounters.

Wish you all the best Dan

Keep me posted on your progress

Steph:dusty:

 

[DanD_D]

Hi All!

Hope you're all ok?

Just a quick update, post hospital today:

I ended up going down the 'Elemental diet' (Liquid diet) route as you suggested Steph, having visited the dietician last week. I've since been on 5 x Fresubin shakes a day of varying flavours, although there are only so many 'Fruits of the forest' you can take! XD They gave me them in hope of bolstering me out a bit. However, still losing weight, so back on low-fibre mixed in with the shakes as supplement drinks (They're worth 400 calories a pop!)

Went to the hospital today after being referred to a gastro expert, who confirmed Crohn's having got my biopsy results back (However, this was 98% certain back in August, just not confirmed). Therefore, they're now looking at a bowel resection to remove 20cm of scar tissue and form a new opening for my small bowel; hopefully in the next couple of months!

Thank you for your continued support guys - would love to hear how you're getting on.

Kind regards as ever -


Dan.

 

[ronroush7]

Hi All!

Hope you're all ok?

Just a quick update, post hospital today:

I ended up going down the 'Elemental diet' (Liquid diet) route as you suggested Steph, having visited the dietician last week. I've since been on 5 x Fresubin shakes a day of varying flavours, although there are only so many 'Fruits of the forest' you can take! XD They gave me them in hope of bolstering me out a bit. However, still losing weight, so back on low-fibre mixed in with the shakes as supplement drinks (They're worth 400 calories a pop!)

Went to the hospital today after being referred to a gastro expert, who confirmed Crohn's having got my biopsy results back (However, this was 98% certain back in August, just not confirmed). Therefore, they're now looking at a bowel resection to remove 20cm of scar tissue and form a new opening for my small bowel; hopefully in the next couple of months!

Thank you for your continued support guys - would love to hear how you're getting on.

Kind regards as ever -


Dan.

Hi, Dan. I hope that everything goes well for you. My Crohns is up and down right now. Waiting for the results of a test to see how much Humira is in my system.

 

[DanD_D]

Hi Ron,

Thank you for your best wishes!

Sad to hear your Crohn's is giving you a bit of a headache at the moment, I hope it settles down soon. Feel free to update me anytime!

Always happy to be an ear to listen or talk to.

Kind Regards,

Dan.

 

[ronroush7]

You are welcome. My gi called earlier. The Prometheus test didn't get done. They only have results from the b12.