Hi I'm new!

[Catattack]

Hi,

Ive recently been diagnosed (May 2012), Ive never posted on a forum before but thought now was as good a time as any! After two years of symptoms gradually getting worse I finally started on medication (yesterday!!). Im on prednisolone and mesalzine. I really hope they work and I dont get any nasty side effects :-/. Im just looking forward to a 'normal'life again which doesn't involve urgently searching for toilets!

 

[Grumbletum]

Hello Cat and a big warm welcome I guess you must be relieved after two years to be getting some treatment at last. Is it Crohns you've been diagnosed with? I started on the same meds as you when diagnosed so hope they get things under control for you.

 

[Catattack]

Thanks for such a quick reply! I was quite excited to see that someone had written something! I think this forum is great as although all my 'non crohns' friends have been great and really supportive its still nice to have contact with people who really understand. Yes I have crohns in my terminal ileum, half of my large colon and duodenum..aswell as a perianal fistulae(which was the first thing to develop a couple of years ago..my GP kept saying it was haemarrhoids and that I needed to eat more fibre!....so frustrating!) anyway I now have a lovely consultant who is great.

I see your now on lots of other medication? Is that because your first lot didnt work? I'm hlad your officially in remission it must feel great!

Cat xx

 

[Astra]

Hiya Cat
and welcome

Glad you found us, lots of Crohnie friends here for you.
I've been on Pred too, and I'm on Pentasa now (mesalazine) hopefully the Pred will work it's magic on you, it's good stuff!
Any questions just fire away!
Lotsa luv
Joan xxx

 

[David]

Hi Cat and welcome to the forum! It's great to have you here though I'm sorry to hear of your diagnosis I'm even more sorry to hear that it took two years and misdiagnosis first! You poor thing.

You mentioned that you're on Mesalazine. Do you know specifically which formulation? For example, is it Asacol, Ipocal, Pentasa, Salofalk, Mezavant XL? And what dose are you on?

The consultant you're working with now, are they a gastroenterologist? Did they discuss the idea of starting you on any other medications soon?

Sorry for all the questions, I just like to make sure people get the care that they deserve

Again, welcome!

 

[Angrybird]

Hello and welcome to the forum :bigwave: The pred does such a good job at hitting the inflammation so fingers crossed you will be feeling better very soon, this also usually increases the appetite so if you have lost a lot of weight that you didn't need to then it can help you regain some of it.

Glad you have decided to join - lots of helpful info and support here for you

AB
xx

 

[nevilletanner]

Hi cat, glad you found us, i was also diagnosed this year with crohns so your defo not the only one.

i was rushed to hospital originally due to being in sooo much pain, after 4 days and lots of pain killers/antibiotics i was released and also put on the same medications that your on.

the PRED - can cause problems when used for a long time, short use is fine (i was on then for two months) after this i spoke to my gp and weaned my self off dropping a tablet a week.

i still take ASACOL MR - there holding the crohns at bay and i guess ill be on them for ever (unless they stop working)

other tablets i am on now (which you may or may not get) :-

pretty strong pain killers
anti spasm tablets
immodium
anti sickness tablets
heartburn tablets
and a multi vitamin

sooner or later they will get you in to see a specialist, then after a few tests they will sort out your meds which will hopefully keep you in remission and leading that normall life that you want.

currently i still take ASACOL and the vitamin (forceval) every day, the rest i only use when required and to be honest life is pretty good for now.

any queries then ask away - the people on here are a great resorce of info and support

all the best

N

 

[Grumbletum]

Hey Cat. I'm just on the Azathioprine now To keep the Crohns at bay. I was ill for about 8 months before I got diagnosed and had an internal abscess and bowel to bladder fistula which took time and that bunch of meds to get under control. How are they dealing with your perianal fistula? Does it give you a lot of bother?

 

[PVail]

Hi Cat
It not nice to be diagnosed with anything but it will give you peace of mind and at least a direction to focus on. You will find loads of help and support on this forum as i have.
Hope you get some relief soon.
Peter

 

[Catattack]

Wow thanks everyone..your all so supportive! Just to answer a few peoples questions..David..yes I am seeing a Gastroenterologist who has done two colonoscopies, gastroscopy and a barium meal x ray. HEHe has put me on 30mg of Pred a day plus two lots of Salofalk enemas,2g (so embarressing I couldbt believe it when I picked them up from the pharmacy..I just thought they would be tablets!). So there we go! I have another appointment in two weeks to review how things are going. Grumbletum...the fistulae isnt too much bother I have had antibiotics which have reduced the swelling and pain a lot so its really just a niggle. They are not keen to do any surgery due to the poor bealing rate of Crohns bottoms!

And..yes the Pred is really magic! Ive only been taking it for two days and I already feel 100 times better..I cant believe it, after such a long time!

Thanks again everyone for all your messages. I hope I can be as supportive to other people.

Cat xx

 

[David]

Hi Cat,

When you go see your gastroenterologist again, be sure to ask him what other medication or treatment option they're going to utilize. Yes, the prednisolone should knock things down quickly for you, but it's a medicine that they want to get you off as quickly as possible. Thereafter, you need something to maintain/improve you further. The salofalk enema is only going to work for a small portion of your large intestine. You need something more based upon your disease activity.

That you have fistulae and they don't have you on something stronger is concerning to me. But that's maybe why you're having this followup, so they can put you on something else? Don't let them send you on your way without an additional treatment plan, it's imperative that you get this under control.

*hugs*

 

[Catattack]

Thanks David I will do...he did say he would look at other meds if the Pred didnt work or a flared back up as soon as I came off them. He also said (which I found odd) that there was no real evidence that maintenance drugs work for Crohns (they do for Ulcerative colitus)..although Gastroenterologist use them anyway? It sounded like I wouldnt be on anything if my flare went away (he said it would be a csse of going back onto Pred to treat any future flares :-/) I am concerned about the long term effects of the Pred and certainly dont want to be going on it too many times. I will make sure I ask the questikns. Thanks

 

[David]

Cat, in the next two weeks between now and your appointment I strongly suggest you learn every single thing you can about every available treatment option for Crohn's Disease. Ask any and every question of us you need to, we're happy to help. Become your own advocate so you can ensure you get the level of care you deserve.

Regarding what you said above:

1. There are maintenance medications that work for Crohn's Disease. NOW, he may have been referring to mesalazine which some refer to as a "maintenance medication" in which case I would agree although it would be strange that he would then put you on that.

2. Prednisone has the potential for lots of side effects and the less you have to use it, the better. Even more, it is not shown to work all that great for fistulas and it is not shown to be very good for inducing intestinal mucosa healing which is important.

I know this can be very overwhelming And I'm so sorry about that. Nobody should have to become their own advocate. Unfortunately, we're finding that when it comes to Crohn's Disease, that is sometimes the case. A few places to start reading and asking questions:

A. Our Treatment forum and subforums: http://www.crohnsforum.com/forumdisplay.php?f=16 -- Be sure to look into the enteral nutrition subforum there as well. It's a great treatment option with few to no side effects.

B. I'm reviewing a book called "Advanced Therapy of Inflammatory Bowel Disease" which backs up a lot of what I'm saying. You can follow along some of those reviews here: http://www.crohnsforum.com/showthread.php?t=36155

C. Read up in our fistula and abscess forum: http://www.crohnsforum.com/forumdisplay.php?f=76

Again, we're here to help. Don't be afraid to ask questions.

*hugs*

 

[Catattack]

Thanks for your concern David. I have been reading a book called 'The essential guide to controlling Crohn's disease, colitis and other IBD's by Professor John Hunter. I think the book is excellent...very patient friendly. He is a big advocate of using diet as the main way of controlling Crohns as it seems to have the highest success rate. I will discuss it with my consultant as I am interested by it although to me strictly controlling your diet for the rest of your life seems quite restrictive (although I suppose if your having a lot of problems maintaining remission it may be worth it).

I'm quite happy with treatment I have been given to start with. The histology results of my biopsies actually showed that the inflammation looks more like Ulcerative Colitis (although the fact that it is in my small intestines and the bottom problems mean it's definitely Crohns) which I suppose is why I am having the mesalazine enemas as the 'UC type' inflammation is mainly left
sided...although it does extend round to my transverse colon (I doubt an enema would reach that far!).

So yes lots to discuss next time I see my doctor. I'm certainly very
keen to stay as well informed as possible. At the moment I'm just trying to take things one step at a time and I am just so happy that the Prednisone is working (as he said it might not)so I'm taking that as a positive thing. it looks to me that Crohn's is such a varying disease and affects individuals so differently that I think it is important to work closely with your own doctors rather than getting too caught up with the experiences of others.

I'll keep you updated! Thanks again for all the advice

 

[Catattack]

Just an update....so the 30mg of Prednisolone a day has worked really week. I've been taking it for two and half weeks and feel fabulous. No symptoms and I'm as high a kite...so much energy! I went back to my gastroenterologist on Friday and he wants me to start weaning off it next weeks by 5mg a week. At the same time he wants me to start taking Pentsa which he said should reduce the number of flare ups (although won't stop them) I have. Incidentally the Salofalk enemas I was using were actually meant to have been Pentasa tablets in the first place (my crap GP couldnt even read the letter from my consultant properly to prescribe the right drug, so I've been squirting things up my bum for two weeks unnecessarily!). Anyway he said that if I flare up again whilst tapering off the steroids or again within sixth months then we could look at alternative drugs to the Pentasa.

So overall I think I'm happy with that treatment plan. It seems to make sense to start on the 'lighter' options i.e the Pentasa before drugs like Humira etc..what do you think? The only thing that concerned me slightly was that he said if I flared up once or twice a year then he would just treat those flares with steroids as and when they happened. Are the side effects of repeated short courses of steroids as bad as long term use? Also my husband and I were thinking of starting a family soon. My doctor said that the Crohns drugs are safe during pregnancy although I'm not sure I'd want to be taking high doses of steroids whilst pregnant?

Anyway hopefully the crohns will behave itself on the Pentasa and that will be that (wishful thinking I'm sure!) :shifty-t:

 

[David]

I'm glad you're feeling a lot better and hope it continues!

I feel a little better about your situation now knowing that it was supposed to be Pentasa all along. That they just had you on Salofalk made no sense to me and the outcome was not going to be good.

There are two primary schools of thought about using the "lighter" drugs first or using the "top down" approach and coming out with the heavy hitters first. Both have their positives and negatives. If you'd like more information on the top down approach, let me know.

 

[Catattack]

Thanks David. I did take your advice and read as much as I could...I do feel that I could give my GI a run for his money with treatment options now. He certainly lifted his head up when I started name dropping certain drugs and referring to my 'terminal ileum' as opposed to the ' bottom end of my intestines' which is how he has been referring to it (despite the fact I told him I was a secondary school Biology teacher/have a degree in Biology and so know a little bit about my own body!). I would be interested in the top down approach vs bottom (non pun intended!) up approach. I have read som articles about the the fact that trying to keep in remission aslong as possible as every time you flare you are increasing the chances of stricturing (and I already have a fretted of structuring in my ileo ceacal valve). At the same time If I can get away with something like Pentasa (which I presume has few side effects) then I think I would feel better about that?

 

[David]

Hi Cat,

If you haven't read these yet, I'd start with these:

http://www.crohnsforum.com/showthread.php?t=36292
http://www.crohnsforum.com/showthread.php?t=36253
http://www.crohnsforum.com/showpost.php?p=445564&postcount=8
http://www.crohnsforum.com/showpost.php?p=445199&postcount=3

Please let me know if you have questions as I know it can be a bit confusing.

And I agree with those articles about the more you flare the greater the chance for stricturing. The problem with Pentasa is:

1. It's not even approved for use in Crohn's Disease. Ask yourself why that might be.
2. It's topically active meaning it works on just the surface mucosa which is why it works well for Ulcerative Colitis. Conversely, Crohn's Disease can be the entire thickness of your intestines.
3. It has a very poor track record for mucosal healing which is very important.

Now, it definitely works for some. But if that's all I was going to be on, I'd make some serious dietary changes, probably utilize at least supplemental enteral nutrition, and make sure they monitored me VERY carefully to make sure I didn't have chronic inflammation that I wasn't aware of. Otherwise, that little stricture you have can become a serious one quite quickly and some very problematic complications can arise.

I'm not saying don't go on the Pentasa. I'm just saying that if that is the direction you want to take, don't just take the Pentasa and call it a day. Utilize the other myriad of proven treatment regimens that don't have any or few potential side effects that can compliment it.

 

[Catattack]

Mmmm those articles make for some interesting reading..thanks (very well summarised!) It is interesting why GI's use Pentasa for Crohns, I presume it's because it is so successful in UC patients that they 'might swell give it a go' so to speak. In my own case I'm wondering whether it's because my disease although diagnosed as Crohns as it's in the terminal ileum aswell as perianal pathology the histology results didn't confirm Crohns with the inflammation actually looking more like UC. Perhaps I have a mild form of Crohns that will do fine on Pentasa? Is is possible to have surface layer inflammation at the start and then for it to progress to full thickness over time? Also would I know if I had chronic inflammation somewhere (would that always present itself with symptoms?....I do remember my consultant saying that the inflammation and symptoms don't always correlate and the only way to be sure is by doing a colonoscopy....do you think they should be a regular thing in my life...I d have private healthcare (I've managed to stay clear of the NHS so far..apart from crap GP) so that could be a possibility) Finally how do you think I could utilise the enteral nutrition? Would that be instead of using steroids to induce remission in future flares? Sorry to bombard you with questions, it's just the more I get into this the more interested I become!

 

[David]

Hi Cat,

I don't know the answers to all your questions, sorry. Others might be able to answer what I can't.

I think Pentasa can definitely help some people, especially if it is more mild and surface layer inflammation. There's definitely people who report Pentasa working for them. My concern is always that it is helping the surface level inflammation but there is smoldering inflammation deeper down that one day catches up to them. I have no data to back this up, it's just a theory of mine, so take that as you will.

Chronic inflammation doesn't always present with symptoms. That's one of the difficult aspects of this disease and part of the reason I tell people who are trying to control this with diet alone to do it under the care of a physician so they can monitor things and make sure the inflammation is truly under control and hopefully find evidence of mucosal healing.

Yes, I think having regular colonoscopys is a good idea, how often would best be determined by your doctor.

There's a variety of ways to utilize enteral nutrition. The two main types of enteral nutrition are total enteral nutrition where that's all you eat and supplemental enteral nutrition where you have it once or twice a day. Even supplemental enteral nutrition has some good data to back it up. If you're able to stick with courses of total enteral nutrition to get flares under control then why take steroids? And conduct experiments on yourself to determine if supplemental enteral nutrition has a place during times of remission to potentially help maintain it. It's about knowing as much about the disease as possible so you can work to find what treatment options work best for you.

 

[Catattack]

Thanks David for all your support and advice. Its certainly been a steep learning curve! Lots to consider in the future. I will discuss enteral nutrition when I see my doctor again in five weeks.

Thanks once again.

 

[Beebop]

I am the same as you... I got diagnosed in November and was put on Prednizone and Pentasa. I was originally put on a drug called Purinethol however I had a really bad allergic reaction to that. I weaned down off the steroids and it was not that fun. Its the steroid that makes you feel so full of beans at the moment so be aware of that as you come down. I dread going back on the steroids if I have a flare up as I seem to get hit with most side affects. Just be aware of what they are because I found I got them at the lower doses as I was weaning off... Read as much as you can about it because it is horrible feeling a certain way and having no idea why.

I am now just on Pentasa and apart from headaches according to my bloods it appears to be working. I have crohn's all in my small intestine so was also lacking in nutrition so I had to have b12 injections and an iron infusion which was interesting. For now everything is settled and I feel great compared to how I did. I find it hard not knowing if a flare up is coming but I have not had one since starting treatment

 

[andreap]

hi cat and beebop
i also got diagnosed in november and since then my life as been a rollercoaster a very fast one.i was put on steroids and pentasa which all ok until i came off the steriods in the january and put me on something else which made me ache and be stiff so i came off them and left me just on the steriods then in march i was rushed to hospital and after a 3 wk stay and 1 long iron infusion and being put on infliximab infusion i felt great but i have now been off the steriods for 4 wks and every joint aches goin from sitting to standing i look like a 90 yr old lady iam just hoping this will go soon and is only a side affect to the long term steriods use. i go for my infliximab infusion every 6 wks and my body tells me when its nearly time fingers crossed no more steriods. i agree with beebop they make you feel full of beans but i have to also say given the choose i would not have started on them the weight gain the side affects can be horrid.

 

[Catattack]

Hi Beebop and Andreap,

Gosh it sounds like you've both had a rough time with your Crohns. I'm glad things are settling a bit better for you now. I suppose I'm lucky really in that I havnt had to spend any time in hospital and things never got too extreme. Most of my Crohns is in my large intestine (about 3/4s of it is affected) and then the terminal ileum, so I didn't have too many problems with malabsorption. Most of my symptoms were diarrhoea ( ten times a day) blood loss and fatigue.

Yeah I really can't believe how amazing the steroids make you feel. I dont think I have ever felt this good..ever! Beebop..I'm surprised you said that you started to get the negative side effects when weaning off and on the lower doses? Everything I have read suggests that the lower the dose the less severe the side effects! Did you taper slowly? I'm starting to wean off 5mg a week starting next week. I'm expecting to lose my 'full of beans' feeling but was hoping not to get negative side effects?! Fingers crossed.:shifty-t:

 

[Beebop]

I didn't really have any effects in the higher ranges... I was worried about weight gain etc but I have only gained 2 kilo since being diagnosed. I tapered off 5 mg a month and that is where things started playing up. I felt very emotional when I dropped from 10 - 5 for about a week and then things came right. When I came off all together my heart rate increased to 120 bpm for a weekend and then came down and I felt really blue for a while. I did some reading around this and found it quite common but it might not happen to you at all. I would just have liked to known what was happening as I felt very out of soughts and didn't know why. As far as crohn's go I dont know how bad I was... I had lots and lots of pain however not a lot of diarrhoea etc. Blood loss and fatigue also were an issue but I have managed to avoid the hospital

 

[Irene3]

Hi Cat, and welcome to the forum. David has already given some great advice, my gi told me Pantasia is for uc, and wouldn't help my crohns. When first diagnosed, I was put on pred, and felt the same as you. I didn't treat my crohns with a maintenance as David advised is important, and ended up with a lot of stricturing. I have to say, i personally think, that treating every possible future flare, with pred alone, sounds absurd. Long term, pred won't work the same on symptoms. It may temporarily reduce your inflammation, which by the way, you should have regular blood tests for, to keep your crp levels in check. It will hide other symptoms, and can cause many many problems!!!! Humira can heal fistulas without surgery, which I only recently was told by a recto surgeon, as I have one also. At least something like aza or 6mp should be taken into account, if you flare or your symptoms start to come back, rather then more pred alone. I don't have regular colonoscopies (I should but as is I have a prob with dehydration, and I get extremely sick with the prep), but always have bloodtests to see how my inflammation markers are doing. Hope it helps, best wishes. xo

 

[Catattack]

Thanks for the advice. I think your right and that regular doses of Prednisolone is not the way forward. To be fare to my doctor he said that if I flared again whilst tapering/soon after tapering or more regularly than once a year then we would explore other options. I think he is just trying to start with the milder drugs first in the hope they work. I certainly wont just let it keep flaring and not insist something else is done...I'll just wait and see.

It's interesting about what you said with checking for inflammation with blood tests...I had blood tests and they all came back clear and yet when I had my colonoscopy three quarters of my large bowel was quite badly inflammed aswell as the terminal ileum (with some structuring)...I suppose it just goes to show how random this disease can be andhow it affects everyone so differently!

 

[Beebop]

Yea my friend was like that too!!! She was super sick but the bloods would come back normal. CRAZY! My GI uses them as an indicator as to whether I am sick or not so maybe I should be a little weary of this. Hope things are getting better! It's not fun at the beginning... so many tests, doctors etc but it's def better now