New and lots of questions!!

[xSophiexx]

Hi my name's Sophie, I'm 21 and I'm from the UK.
After a long long time of being really poorly and being told I have IBS / its in my head, a Sigmoidoscopy that showed nothing, I was reffered to a GI Specialist (Only person who has taken me seriously!) He referred me for a Colonoscopy, which finally showed that I have severe Crohns Disease, Ileitis and am currently massivley inflammed, Mucosa and Ulcers etc.
This was in the middle of last month and after the procedure the Doctor gave a me a prescription for Prednisolone 8 tablets a day for 2 weeks, 7 tablets for 1 week, 6 for 1 week etc etc and sent my results (lovely colour picturess haha) to the specialist.
Been back to the doctors since because lovely Prednisolone decided to give me mouth thrush and the worst Acid Reflux ive ever had so now on Omperazole 20mg a day.
I'm now waiting for my follow up with the Specialist on the 25th June. Now for the questions...

Prednisolone - how long should this take to work, granted I havent been having symptoms as regularly but I have still been suffering with D, pain etc, but its clearlygot into my system because of the mouth thrush, my face is HUGGGGEEEEEE and so is my appetite lol.

How do the doctors determine if you are still having a flare / in remission and if you still need to be on the Steroids??

Also the Specialist said I may need an MRI in the first appointment- any idea what this would be for?

I have been reading alot on this forum and It's really helpful in terms of educating myself on this beast of a disease but sometimes I wonder if the medication / procedures are the same over here as alot of you guys are from the USA.

Thanks for reading any help would be appreciated !!

 

[skippy111]

Oh the prednizone will deffinately help with the inflamation,
You can't just stop taking it because it can cause all kinds of problems..

You have to step down gradually, I was taking 60mg a day but now my GI Dr says to start dropping by 5mg per week... then in august I will have a colonoscopy..

once you get down to 20mg or so, you might find that instead of dropping by 5mg or whatever , 2.5 will be better...

remember , you need to ween off slowly...

The MRI will give the DR a clear view of your abdomen and pelvis ,,

 

[xSophiexx]

Oh no I definately wouldn't just stop taking it - I've read up about it alot and understand it can cause a world of trouble!

I'm tapering by 5mg a week, Down to 25mg at the moment.

So how do the Doctors tell if your 'in remission'? this is what i don't understand, will i need another scope???

 

[skippy111]

well, you both will be able to tell through possibly another scope, and also, how you feel, if your symptoms go away or decrease.

 

[Angrybird]

Hi Sophie and welcome to the forum, glad you have decided to join With regards to the pred for some it will give a noticable improvement in a couple of days for others it may take a little longer - one thing you will find here is that we are all different in how this disease behaves and what will help keep it at bay. The ideal is always for steroids to be a short term med. The MRI could be used to deterimine the depth of any scarring that may have ocurred from the inflammation in the bowel.

Remission to me will be to be symptom free (no pains, diarroea/constipation etc) and to feel generally well in yourself (no aches and pains, fatigue etc). Any routine bloods that may get done depending on what meds you are given also will show that levels (inflammation, bloods counts etc) have returned to normal ranges.

I hope you can be feeling better soon, pls keep us updated on how you get on.

AB
xx

 

[xSophiexx]

Thanks Angrybird that makes alot of sense.

It just seems like the Prednisolone isn't working - or at least isn't working very quickly! But I shouldn't expect a "quick fix" Hopefully it'll help settle me down soon.

I'm yet to find out if the specialist wants to do an MRI still but if he does at least I know what he will be looking for! I guess remission will be when I feel better .. seems a long way away!!

I have definately learned from reading on here that Crohns is COMPLETELY different for every single person, it's all about finding out what helps each individual - What a confusing disease this is!

Thanks for your comments.

 

[skippy111]

oh trust me, the prednizone is working just fine... depending on how much inflamation you have it takes a few days or so but it is working...

right now you need your nutrients too, what happens is that once the intestines become inflamed your body is not absorbing the nutrients so malnutrition can occur.. the prednizone will help your body to absorb the nutrients as it fights off the inflamation....

if you notice you are getting hungry alot, then you know it is working,

I eat like a horse.... its like I cant stop eating, but then again I went from a puny 156 to a healthy 175 in 45 days,

now im stepping down 5mg per week and then lets see what the colonoscopy says,

Good luck and keep us posted.
Skippy

 

[xSophiexx]

Oh I hope so - Thanks Skippy.

I can't stop eating but I can't eat anything that's good for me like fruit and veg anyway so not many nutrients going in!

Thanks again.

 

[xSophiexx]

Little update for you - had a bad couple of days in terms of all the nasty symptoms coming back, Blood, Diarhea, Feeling sooo tired etc.. so spoke to the doctors who told me to go back up to the minimum dose of Prednisolone that was keeping it under control (sort of) so back I go to 40mg again - Can't wait to see the specialist now to try and sort me out!

 

[ThatsWhatSheSaid]

Sophie I'm sorry to hear about your problems. I've been on Prednisone a number of times. Sometimes it takes a while for it to kick in. I just started a 40mg dose on Monday and my mouth sores are already gone! I'm still having issues otherwise but it is a good sign. The inflammation in my system is going down.

I remember in science class in fifth grade we learned the 'guess and check' system to solving problems. I never thought that would become a doctor's approach to my health and medications. Ick.

I'm sorry it seems to have roared back with the decrease in Pred. It can take time. Prednisone is always a window of relief for me. I need an 'all the time' relief though, and having a hard time getting it. When is your appointment with your specialist?

I'm sure people have suggested it before, but time and time again I personally forget or miss something in an appointment if I don't write it down. I get very rattled as my health is very intimate to me and even my most important questions (which I didn't write down because they were so important I just wouldn't think I could forget them) have been forgotten.

Hugs.

 

[xSophiexx]

Thanks ThatsWhatSheSaid for your reply.
My appointment with the GI Specialist is on the 25th of this month - I'm hoping he will be able to give me some answers of what will happen from here on in terms of medication, more tests etc because I haven't seen him since by Colonoscopy where I was diagnosed! Thanks for the advice of writing down all the questions I have, I'm the same I would forget half the things I actually want / need to know!
Pred is just not helping me at this point, I'm back up to 40mg a day for the last 2 days and still suffering, I'm hoping it kicks in soon - fed up of feeling constantly ill!!
I'm absolutely petrified that it won't work and I'll have to have surgery - I think that's me being a drama queen though haha.

 

[David]

Hi Sophie and welcome I'm glad you joined but am so sorry to hear you're having so much trouble Some questions:

1. Is the pred the only medication they put you on? Have they discussed additional treatment options?

2. You may want to research enteral nutrition. It's an amazing treatment option and will often not only help calm the disease down, but also helps get those nutrients that you so desperately need.

3. Have you had your vitamin D, vitamin B12, and folate levels tested? People with Crohn's Disease are commonly deficient in those.

4. Were any of your blood test results abnormal?

Again, welcome to the community. We're here for you!

 

[ThatsWhatSheSaid]

You're not being a drama queen. Prednisone is not a long term answer so even if it works wonderfully for you there is going to have to be a maintenance medicine- otherwise the crohns will have the opportunity to cause damage that could need surgery. I'm on a very moderate maintenance medicine, Pentasa. But it isn't working right now by itself and I am afraid that when my course of prednisone is up, so will be my feeling decent.

I know you haven't had you're appointment yet but how are you doing? Are you doing okay?

 

[Keepingfaith]

Prednisone does nothing for me because my Crohn's is so severe I don't even digest the pills. The only weight gain I ge is usually just water retention. I just got out of the hospital on 60mg IV prednisone. I have to go to the hospital for a week to get the methylprednisone infusions when they put me on it so they can make sure I digest it. Prednisone is fast acting for most and if your pain is already decreasing, that's a good sign. I haven't been in remission before & the only drugs that have offered me relief were high doses of IV steroids & weekly Humira but I recently just started Cimzia so hopefully that might put me in remission. Remission is when your disease shows no signs of inflammation(you still could have symptoms) & usually GI's scope you again & once no inflammation is found, you are demmed in remission. Like That'sWhatSheSaid already replied, you need to be on a maintenance drug. You will probably be put on Pentasa or something simmilar & if it works then that your will be your maintenace med. If not, your GI will prescribe something stronger until you just need to be put on a biologic like Remicade/Humira/Cimzia & these drugs work wonders for a lot of people & put them in remission.
Your Crohn's is affecting just your ileum? I know of many others who do EN for their small bowel Crohn's and it can be just as affective as Steroids for those with small bowel disease. A lot of people with moderate-severe disease have avoided surgery for decades & I know of MANY who have not had to have surgery. Surgery is usually preserved for those who either CAN NOT get the disease managed after trying countless medications or have complications such as obstructions, abscesses, fistulas etc. You aren't being a drama queen! You're naturaly curious and worried like all of us have been.

I hope you feel better & I know it is tough but once you get everything straightened out you'll be on the road to feeling better! If you ever need support or need to vent feel free! You are sick so don't ever feel like you are being a burden!

 

[xSophiexx]

Thank you for your kind words!
David - I had blood tests on my first appointment with the GI (before the colonoscopy) but haven't been told what they were for / if abnormal or not. hopefully when i go back he will be able to tell me but previous blood tests i have had have never shown massive inflammation or anything like that - probably why it took so long so get a diagnosis. I have seen alot about b12 deficiencies etc so will definately push to be tested for that. Prednisolone is the only med i am on right now back up to 40mg now as symptoms are terrible again - Im guessing when i see the GI he will discuss treatment options i don't know how they feel about enteral nutrition in the UK but looks interesting and something that would most likely help me so i will definately raise that too - i have a feeling i will be chewing the poor mans ear off! thanks for your reply!

Thatswhatshesaid and keepingfaith thank you for your kind words. Im having a love hate relationship with prednisolone right now i thought it was starting to help and then all of a sudden it stops. Im back on a higher dose right now but i really hate it! hoping they will give me something else and get me on the maintenance drugs asap. Im going on holiday in 2weeks time so fingers crossed something will help me before i go!!! Thanks for reassuring me about the surgery side i think too much googling has scared the life out of me and where the doctors aren't telling me alot its completely unknown to me and can be scary at times Im so greatful for your help and advice.

Xx

 

[ThatsWhatSheSaid]

Ohh that is exciting that you are going on vacation!! Where to?? I love traveling and get wanderlust if I don't go somewhere every couple of months.

P.S. I love and hate prednisone too. But right now my only choices are feel bad or good, so what do you do? For me, I can always tell it 'stops' working when the dose is decreased. It is like my body needs that certain amount of immune system supression to function optimally, you know?

 

[xSophiexx]

ThatsWhatSheSaid - Im going to Turkey for 10 nights Can't wait to have a break!! I really need it have been poorly this last week though I ended up in A&E as had a temperature, stomach pain feeling sick etc and they just palmed me off with a 1mg dose of Pentasa Suppository (excuse the bad spelling) prescription to take for two weekes??! Now I googled Pentasa suppositories and all I found was that it is a maintanance drug for mild / superficial inflammation in the rectum - my Crohns is SEVERE and in the Ileum with ulceration through the Colon - why on earth would they prescribe me this?!?! Superficial?!! Really!!! I actually am at a stage now where I have lost ALL faith in the NHS, I didn't even get the Pentasa prescription just continuing with the 40mg of Prednisolone and eating plain foods and hoping this goes away!!
And I'm STILL waiting for the GI appointment - which, by the way, is classed as an URGENT appointment?!! It's been over a month!!!!!!

Rant over =]

 

[felicity1981]

Hi! Omg I would be frustrated too.rant all ya want honey atleast we can relate..xx
1mg pentasa sounds very little.. I'm currently on 3000mg pentasa and I have mild crohns...before my surgery a month ago I was on azathioprine with prednisone and pentasa.. you should make a list of possible treatments / medications before you go to your Dr.. be prepared and get yourself psyched up to asked them directly why they don't try other meds.. be strong! Xx oo :kiss:

 

[xSophiexx]

Hi felicity1981 - I have got myself very prepared I have the LONGEST list of questions for the GI man (who im seeing this afternoon) he's not going to know what has hit him lol! Hopefully i will come away with some answers and a game plan - i'm not being 'palmed off' this time thats for sure!
And I agree with you 1mg sounds ridiculous compared to 3000 lol! I genuinely think they just prescribed it so that i'd go home and leave them alone!
Thanks for replying! xx

 

[xSophiexx]

*UPDATE*

So I had my appointment with the Gastroenterology Doctor yesterday (First appointment following the Colonoscopy).

He said that the Colonoscopy looks like Crohns but they need the biopsy results to confirm this and these are at the hospital that did the Colonoscopy not the hospital where the Doctor is. He said it's pretty much 100% that it IS Crohn's they just need the biopsy result to be definitive.
The disease is currently active in the Small Intestine, the Colon and the Rectum - Ughhh I thought it was only the small intestine?! And i have inflammation ulcers etc.
He is sending me for an MRI to look at the small bowel to check for narrowings, inflammation etc - This could take a MONTH :-(

He then teased me and said he would change my medication to Budesonide instead of Prednisolone and would give me Pentasa aswell but then he went and spoke to another doctor who said no I need to stay on Prednisolone because I've been on it for so long but UP the dosage to 60mg a day for a week, 50mg day for a week and then taper down by 5mg from there. No Pentasa just Prednisolone. This is so confusing for me!!

I then had to have a blood test to see if I will be suitable for Aza (not even going to try and spell the full word haha) and once the inflammation has settled he wants to start me on this. I am to go back in 3 MONTHS to discuss further. *Sighs*

I then asked what happens if the Prednisolone doesn't work because so far it totally hasn't been and he said if it hasn't started to take affect in 2 weeks to go back and they will put me on a drip? He also mentioned Infliximab?!
I asked about the blood tests they have done and they said my CRP was originally 20 and in 7 weeks has gone down to 14, it should be 5. He said this isn't very high considering the amount of inflammation I have, I researched this and apparantly it's common for this not to show up in blood work??!

So now I'm basically in the same boat just taking MORE steroids which is horrible, felt like crying when he changed his mind and said to stay on Prednisolone. And scared in case it doesn't work and I have to be hospitalized - What drip would they put me on?!?
I think I was hoping for a quicker fix I need to get it into my head that this is a marathon not sprint.

 

[stickman7755]

Last fall I was on predisone for awhile, however the crohns was so bad I had to get surgery. Has your doc mentioned the need for surgery? The recovery sucks, but in the long run I think it is worth it. Good luck

 

[xSophiexx]

Stickman7755 - Well I said to him will I need Surgery?! And he said they're not thinking that far ahead yet as I have just been diagnosed - See how the Prednisolone goes. Im scared with regards to Surgery as I'm only 21 if they start cutting parts out of me now I'm not going to have much left by the time I get older LOL!
Did they go straight from Pred to Surgery with you??

The different medications and things are so confusing!

 

[stickman7755]

I was diagnosed last Sept and put on predisone and imuran. In Oct they did a small bowel follow through xray and it showed that the inflammation wasn't going away. At a certain point surgery is the only way. I then had the surgery in early Dec.
Although I was just diagnosed in September, I have looked back and have had crohns symptoms since I was a child its just a really hard disease to diagnose

 

[David]

I'd do what you can to push them to get you on the Azathioprine sooner rather than later. I say that because it can sometimes take a few months to reach therapeutic levels in your system It seems like they don't have a plan to bridge the time between your prednisolone use and when the Azathioprine becomes active.

If they won't move it up (and even if they do) I want to once again reaffirm my suggestion to research and discuss enteral nutrition with your doctor.

 

[xSophiexx]

David it's so hard with the NHS to push for ANYTHING.. I have to wait until my appointment in 3 months time now for more / different medication. They really do not have a plan to bridge the gap, I have read up about Aza now but the doc gave me the impression that it can only be use after the inflammation has gone down - it seemed as if his main aim at the moment is to bring down the inflammation I have and give me an MRI to see if there is any narrowing etc. and then in 3 MONTHS see where we're at. It's such a long process, from reading on here it seems like American health care is so much quicker and they actually want to help you. The NHS on the other hand is sooooo slooooowww!

I thought the Budesonide and Pentasa plan sounded good but he changed his mind, I asked if I could please do that instead of staying on Pred and he said no. It's Pred or nothing sort of thing! I researched Enteral Nutrition and it does sound like a great way to enduce remission but I'm doubtful I'd be able to do the whole NO eating thing! However, If this bout of steroids doesn't nuke my inflammation this will definately be something I will be hounding the doc about.

This is all ever so frustrating and there is no set in stone treatment plan that will help everyone, its all very 'trial and error'. I feel like I'm just repeating myself over and over and annoying people but I'm finding it hard to get my head around!

 

[David]

That must be so frustrating

Azathioprine can definitely be given while you have active inflammation, it is not just a maintenance drug.

Even supplemental nutrition (replacing one or two of your meals instead of all of them) is better than nothing. If they're not going to bridge the gap, find a way to yourself.

*hugs*

 

[bumble_bee]

I know how you feel about the prednisone, when i was diagnosed i was in bad shape and the pred did not do a thing for me. It didn't make me feel any better, only worse because of all the side effects. If it makes you feel any better, i did try budesonide before the pred and it did nothing for me either! I ended up having surgery 5 months after i was diagnosed because the steroids weren't working and i felt so awful i wanted it done! I was 25 then and had 2.5 feet of small intestine taken out. That was almost 7 years ago now and up until last year, I was med free and for the most part, felt good. Last year I started Remicade (Infliximab) after a flare and since then I've been in remission. My blood work comes back within normal ranges for everything which is great as i've always had problems with anemia, high inflammation markers etc so my doctor says the Remicade is working. Now I seem to be suffering partial obstructions whenever I eat anything of substance which my doctor thinks is due to narrowing from scar tissue. This more than likely means another surgery in the near future but i'm ok with that I think...once that's cleared up hopefully I'll be good for a long time with the Remicade!