Crohn's Disease

shalalala

I haven't heard anything about markers but my official diagnosis is crohns colitis. So i seem to have both. Fun times!

Janedoe10

shalalala wrote: »

I haven't heard anything about markers but my official diagnosis is crohns colitis. So i seem to have both. Fun times!

Cool at least there are 2 of us shalalala! Fun times indeed.

Turtwig

Crohn's can occur anywhere in the digestive tract. Crohn's colitis is just medics fancy term for crohn's disease manifestation in the colons.
Indeterminate colitis is when they can't discern whether the colitis is due to Crohn's disease or Ulcerative Colitis. Ulcerative Colitis, is well, UC.

The_Conductor

shalalala wrote: »

I haven't heard anything about markers but my official diagnosis is crohns colitis. So i seem to have both. Fun times!

Crohn's colitis- means you have Crohn's Disease, however its only found in your large intestine. Its one of the 5 types of Crohn's diease (the 5 different types referring to the area in question that is affected). Its possible (and common) to have more than 1 of the 5 types- however Crohn's colitis simply means you have a definitive diagnosis of Crohn's Disease- however, its found solely in the large intestine.

The_Conductor

Heres a good description of the 5 different types of Crohn's Disease

Click Here

SmileandNod

Hi All

Can I ask if anyone has had any issues with steroids not working for them?

Tony H

How long have you been taking the steroids without them having any effect ? I'm just coming out of a bad flare up and it took nearly two weeks for prednisone @40mg and predfoam twice a day before I started to feel normal again .

Turtwig

budesonide (Entocort) was a total disaster for me.

As for how long it depends what you mean? Controlling the flare may only take a day or so. Reducing your symptoms, healing and managing damage done though may take a whole lot longer.

The_Conductor

Sometimes I need hydrocorisone by infusion- sometimes as an inpatient, sometimes on a day ward- taking it by tablet form just doesn't cut it- I don't absorb enough of it (or at the start of a flare-up- fast enough).

Different things work for different people- and what works for you at a particular point in time will vary depending on the intensity of your Crohn's- there isn't a one-size fits all.

princess-lala

I genuinely never thought I'd be posting in this thread. A different thread in LTI yes but defo not here.

So 4 weeks ago I got my diagnosis, ended up back in hospital last Wednesday. Steroids straight into the vein isn't helping as of yet.

Anyone care to tell me that it will get better?? I will get my normal life back??

The_Conductor

princess-lala wrote: »

I genuinely never thought I'd be posting in this thread. A different thread in LTI yes but defo not here.

Sorry to see you round these parts!

princess-lala wrote: »

So 4 weeks ago I got my diagnosis, ended up back in hospital last Wednesday. Steroids straight into the vein isn't helping as of yet.

Its early days in all fairness. From personal experience- it always took a few days for the hydrocortisone to kick in- but kick in it did. You do need to talk to the consultant when hes doing his rounds- get his assessment of what he thinks of your progress (thus far) and what roadmap he sees for you. There are different regimens out there- he may have plans to treat you in a different manner than you may anticipate- whats key here though, is communication- you need to talk to him- to find out whats happening.

princess-lala wrote: »

Anyone care to tell me that it will get better?? I will get my normal life back??

Better? Normal? Most of us live semi normal lives- it all depends on whether we're undergoing a flareup or not. There aren't a list of definite things to avoid- or a list of foods that will help you- it really is a personal thing- what works for one person may not work for another.

If you look at websites you'll see all manner of wisdom- smoking is terrible for Crohns, avoid alcohol at all costs, you'll never eat a curry ever again, coffee is lethal........ Its all a load of bollox. What works for one person, may or may not work for another. Normal may include having a handful of tablets in the morning- and what was normal last week, may have a new 'normal' next week- the only constant in life, is change.........

Relax- take things easy, try not to get frustrated or bored there, you obviously have the internet- get family or friends to bring you in some DVDs or shows- but the main thing now- is get rest- and talk to the consultant, and find out whats happening..........

Be nice to yourself!

princess-lala

I'm on 2mg pentasa twice a day, 20mg nexium and 20mg of steroids.

I'm on 4mg pentasa twice daily, 40mg nexium and 100mg steroids 4 times a day since I came in. As well as other stuffs.

its mad how much my life has changed in 5 months

Turtwig

princess-lala wrote: »

I genuinely never thought I'd be posting in this thread. A different thread in LTI yes but defo not here.

So 4 weeks ago I got my diagnosis, ended up back in hospital last Wednesday. Steroids straight into the vein isn't helping as of yet.

Anyone care to tell me that it will get better?? I will get my normal life back??

*Hugs*

In general most people will get back to a semi normal life with periods of little to no symptoms and remission. In general, people can affected both emotionally and physically. In general, people who smoke face further complications than those who don't. In general, a low fibre diet following a flare up produces the least discomfort. In general, everything will be generalities. Every individual is different though. Only time and trials will really tell. Your consultant will probably offer you the best guesses depending on where the flare is primarily affecting.

You're going to need find to find what works for you and remain open to the fact that this can change depending on how your body is doing. One year banana might be ok. The next, you may be ready to thump lumps out the person who suggests banana to you because that sickens you! Trial and error is really the only way. Hopefully find stuff that works and stick to that. Alcohol may be grand, it may be shyte, it may just be wine, or it may be all alcohol, you're not going to know until you try. After the next flare it might be fruit juice that's problematic and lo and behold alcohol might be grand but are you going to risk it? Then, if you're one of the really lucky ones, you may find that a few months after a flare you can resume a normal diet. Or you may also find that certain foods seem to provoke flares. Or it may in fact be a type of exercise that does! Or a medication! Trial and error. Following the generalities at first is the probably the most efficient way because once you find stuff that works it's probably best to stick to those and not take too many chances. Find the foods, exercise regime, medicines and treatment plan that work and stick to those until they don't work seems to be the overall generality. :rolleyes:

As Conducty said, all that will probably remains constant is that things change. You won't though, you'll still be the same awesome self you always were and you WILL find ways to manage the condition with your life.
Be uber nice to yourself and by all means free to vent here.

princess-lala

*waves*

Me again, quick question here now.

Imuran has been mentioned today. So obviously me having far too much time on my hands I googled the sh1t out of it

Does it work enough to counteract the side effects? I'm seeing an unbelievable amount of side effects :eek:

I know and before anyone says it I'm not looking for medical advice just an opinion. My team will be down to see me in the morning so I'll know more then

The_Conductor

You may- or may not have side effects.
When you google things- you see the very best case scenarios- and the absolute horror stories- you don't see stories about what happens to the average person walking down the street....... Its only those who have horror stories- or miracle stories- who tend to tell their tales.

Personally I was on Imuran for 7 years- before being taken off it (as my white cell count crashed to nothing- and I needed constant plasma transfusions for 3 years before things have returned to some semblence of normality).

It worked fine for me- for a number of years- before for whatever reason, I became hyper sensitive to it- and it was no longer suitable.

I'm now on anti-inflamatories on a daily basis, alongside warfarin (no-one told me a common complication of Crohn's was a propensity for blood clots, though I now know that)........ aside from that- and infrequent day patient appointments for iron infusions, I'm pretty normal. I have a 4 year old and a soon to be 3 year old- who were jumping up and down on my tummy earlier- aside from kicking me in a way that may mean they have no more siblings- I have no ill effects- that sounds to me like normal.

Normal- means different things for different people. You can have a normal life- it may be different from other people- but it can be your life- it can be fulfilling, you can have fun and enjoy yourself- and having Crohn's doesn't have to define you in any way.

Hope you're feeling better in there- keep asking those questions!

princess-lala

Aaah now I understand the warfarin injections I did wonder

My IBD nurse will be down first thing to answer my 3 pages of questions. At least then I can understand some more.

They almost sent me home today but I'm on some painkillers that I can't drive on so if I go I can't drive, get back to work until I'm back here in another 2 weeks. I thought the point was trying to give me a normal life

Surgery was mentioned today the feckers.

The_Conductor

The warfarin / innohep / heparin injections are to make sure you don't get clots while you're in bed there. They'd normally give you pressure stockings too.

I'm on daily warfarin because of recurrent pulmonary clots, they tend to form below the knee and travel. Its not a big deal to be honest, I just have to attend the warfarin clinic every few weeks to have an INR done, its actually handy, I can get them to do a FBC at the same time.

If they are suggesting surgery for you, don't necessarily dismiss it out of hand. It can be remarkable, you can have a new lease on life. I've had few times, I may even be a bit blasé about it, Ive had remarkable success with surgery, I just wish it was done sooner in my case.

Keep asking keeping questions, get answers, make informed decisions.

princess-lala

Oh I didn't dismiss or agree to anything as of yet.

I'm taking everything on board and listening. My doc is away until Tuesday so nothing major will be done before then anyway

Turtwig

A key thing to keep in mind with imuran is that with long term use the side effects of it are far rarer than the side effects from long term use of steroids. Imuran is also used for a plethora other things including chemotherapy and organ transplants so keep that in mind when googling people's reactions to the drug. It is around a long time so the side effects are pretty appreciated by now. You'll have regular blood tests to test for the most serious and common side effects.

Does it negate the side effects? Tough to answer. The serious side effects are very rare but they do exist. The drug can be a slow burner to work (2-6 months). It's just a guess but I'd say your consultants plan is to wean you off the steroids and by the time you're fully off the steroids the imuran should be making some contribution and their thinking is along the lines of the long term use of steroids posing far more risk to you than the imuran. It's all about balancing the lottery so to speak. Imuran has serious consequences but those consequences are far less likely than those of long term corticosteroids.

Seeeing as you've apparently got the time.:P This talk may be helpful for you. It's a little old now, but I found it invaluable at the time.


Transcript:http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Slides: http://www.ccfa.org/assets/pdfs/decision-making-slides.pdf

Relative bit on Aziothorpine [AZA] (Imuran)* begins at slide 5.

Klair88

princess-lala wrote: »

Oh I didn't dismiss or agree to anything as of yet.

I'm taking everything on board and listening. My doc is away until Tuesday so nothing major will be done before then anyway

princess-lala wrote: »

Oh I didn't dismiss or agree to anything as of yet.

I'm taking everything on board and listening. My doc is away until Tuesday so nothing major will be done before then anyway

Hey.
Was reading your posts and just wanted to give you a few details about how I got on after diagnosis. I was diagnosed in Spring of '12 and went through about 6-7 months of steroids & other medication (was mostly on Prednisone) before eventually having the surgery to remove the infected part of my Large & Small bowel.

Surgery was great for me, although I suffered the obvious effects of having a major surgery done, I had the ability to eat without pain again! I got my weight back up from 7.5 st to 9.5 st in about 2-3 months and finally felt positive about life for a long time! I was scared of having surgery as well, I actually asked my GI doc to give me more time on higher steroids than do the surgery! steroid side effects really bad, Prednisone wasn't nice for me.

Now it's been about 15 months since the surgery and I am still in remission, after claiming about 75% of my life back! I'm pain free and can eat freely again but I do suffer daily issues related to crohns as a result but what I go through to daily now compared to when I was in a flare is incomparable.

As an above poster said you'll just have to try & find what's right for your body. I don't drink alcohol or many other things but I have a herbal remedy that extremely helps me deal with the after issues of crohns!

I hope you get better soon, get relief and remember; There's many great threads and communities of Crohns out there with people in all stages of the disease. Their advice and knowledge of what you are going through can greatly help & assist you.

This thread and the people in it are fantastic. I also recommend checking out r/crohns on Reddit. It's a big community filled with world wide suffers.

Stephen P

Does anybody else experience night sweats. Lately I wake in the morning and my body is soaking with sweat and the bed sheets are wet. I thought it may be my pjs so I changed to lighter ones but didn't have any effect and the room isn't warm.
I've been looking online and there seems to be some connection to Crohns. I'm away in Manchester at the moment but will ring my IBD nurse on Friday so get her advice.

Turtwig

Night sweats could be many things. Need to talk to your GP if they persist. Could be something innocuous or serious need to get it checked. From personal experience had them once from imuran when white blood cell count was low.

Stephen P

I'm on Imuran for the last year & half. I had my bloods checked in the last 2-3 weeks and everything was fine. I'll talk to my IBD nurse and see what she says and then might have to visit my GP Hopefully nothing serious

Turtwig wrote: »

Night sweats could be many things. Need to talk to your GP if they persist. Could be something innocuous or serious need to get it checked. From personal experience had them once from imuran when white blood cell count was low.

princess-lala

Stephen P wrote: »

Does anybody else experience night sweats.

I've been experiencing this for about 5 weeks now.

Last few weeks I was blaming being in hospital. My ibd nurse told me yesterday it can be part of the meds/low white cells/infection looming.

My bloods are ok so she's reckoning mine is my body settling into the meds.

Stephen P

princess-lala wrote: »

I've been experiencing this for about 5 weeks now.

Last few weeks I was blaming being in hospital. My ibd nurse told me yesterday it can be part of the meds/low white cells/infection looming.

My bloods are ok so she's reckoning mine is my body settling into the meds.

What meds are you on? How long are you on the meds? I'm on Imuran since October 2012. I'm going to ring my IBD nurse today to see what she says.

princess-lala

I'm only diagnosed 5ish weeks.

Taking
4mg pentasa daily
30mg (reducing weekly) prednisone
40mg emazole daily

Been on the above 8 weeks. The emazole was upped from 20mg to 40mg 2 weeks ago.

For pain at the minute paracetamol and tramadol.

Also on colofac for spasms.

When I went back into hospital 3 weeks ago they were injecting the steroids 4 times a day and 100mg each time.

Stephen P

princess-lala wrote: »

I'm only diagnosed 5ish weeks.

Taking
4mg pentasa daily
30mg (reducing weekly) prednisone
40mg emazole daily

Been on the above 8 weeks. The emazole was upped from 20mg to 40mg 2 weeks ago.

For pain at the minute paracetamol and tramadol.

Also on colofac for spasms.

When I went back into hospital 3 weeks ago they were injecting the steroids 4 times a day and 100mg each time.

I was on the Pentasa when first diagnosed in 1997/1998 for about 8 years. Was on the Prednisone a couple of years ago, didn't like that at all, face bloated out and skin was oily. Never heard of the other meds you're on.

Turtwig

One drawback to imuran and pred (and possibly IBD itself) that today reminded of is the possibility of hypersensitivity towards the sun.

The_Conductor

Turtwig wrote: »

One drawback to imuran and pred (and possibly IBD itself) that today reminded of is the possibility of hypersensitivity towards the sun.

Ditto- quite unusually vicious migraines.......

shalalala

Another random question. Anyone brought meds abroad? Going to Italy and on mezavant which is so incredibly expensive here wondering if anyone had an idea of the price abroad?