What treatment comes after Pentasa for Crohn's Disease

[vickyj]

Hi.
I was (finally) diagnosed with Crohns about 6 months ago....after being treated for UC for nearly 40 years.
I have "moderate" crohns - am taking only Pentasa - but have my next appt. with specialist early September.
For the last 4 weeks I have been feeling unwell - with bad cramps, constant D. and a horrible fatigue.
I work 9 till 3. Some days I don´t know how I drive home - the urgency of the D. plus fatigue that just wipes me out. It is not a normal tiredness - I just HAVE to lie down before I fall down. I sleep really heavily for about 3 hours....... and then I have no trouble sleeping the whole night through. A deep sleep.
Could anyone tell me what treatment I can expect when I go back to the hospital? What would the first treatment be, after Pentasa.......which doesn´t seem to be helping any? Is cortisone the next stop for me? Or is there anything else before that?
I can´t take immodium or similar for the D. It does stop it - but the pain and gases I get outweigh any benefit.

Sorry to whinge. I know there are so many people out there alot worse off than me.
Thanks for listening.

 

[MapleLeafGirl]

I would think a round of prednisone would be next, but you never know as it really depends on the doctor and your individual situation. It does really help, even though the side effects aren't the greatest.

 

[Crohns08]

They might go the prednisone route, but if your crohn's is in the terminal ileum you can ask for Entocort, which is a steroid, but it isn't systemic. They might also try humira or remicade before that, it just depends on the case and other factors.

 

[vickyj]

Thanks for that. The Crohns is in the terminal ileum. I have to find out what Entocort would be in Spain. (Where I live.) I will check out the others too. I will obviously go with what the doctor advises - but it is so good to find so much information on here - and not be completely ignorant on the subject.
I don´t know anybody at all with Crohns - so it can get a bit "lonely" at times......people think that we just spend alot of time in the bathroom, and that´s it. Sometimes the symptoms are so undignified....you just don´t feel like explaining. It´s great that on here you can.
Thanks again. Vicky

 

[DustyKat]

Hi vicky,

Since your Crohns is in the terminal ileum are you taking any B12 or iron supplements?

Have you had any bloods done recently?

Dusty.

 

[Guest]

hi Vicky, & welcome to the forum! what a lovely part of the world you live in

i'm afraid that despite my having Crohn's for 2/3 of my life, i'm not much good when it comes to medicinal advice or experience, as i've hardly had any medications for it - instead i've had surgeries.

but, i can give you a warm welcome - and i'm glad you joined us! i don't think there is any aspect of bowels and bottoms that doesn't get discussed here, so don't worry about sharing

 

[vickyj]

Thanks Dingbat for the kind words.
I don´t take any medication for Crohns except Pentasa ("Claversal" in Spain btw.) Dusty -but feel sure I should be having some sort of treatment after the month I´ve just had.
I have an appt for more blood tests 1st Sept and a follow up appt. with the specialist 10 days later. (Last full blood tests were 6 months ago...and there didn´t seem to be any problem.)
Can I take B12 or iron supplements off my own bat - or do you think I should wait to see the doc? Also - I have been reading alot on here about the benefits of fish oil supplements - would you have any advice on this for me?
So grateful for your input.
thanks, Vicky

 

[Astra]

Hiya Vicky

I should think they'll try you on the Pred too, or Entocort which is a 10% derivitive of Pred, milder and nonsystemic, in that it'll only go to the terminal ileum, in slow release capsules, rather than the whole body, less side effects too. But Pred will certainly give you tons of energy, so much in fact, you'll probably get insomnia! I loved Pred, it made me feel so well and healed me nicely. If you do go on steroids, be sure to take some calcium supps, cos steroids can rob us of our calcium, not good in later life, ie osteoporosis.
I take over the counter multi vitamins and iron tablets, and omega 3 fish oils, these can be bought from any supermarket.
good luck
xxxx

 

[6pounds7ounces]

Seems like ANY time I bring up something not going right with my Crohns to my G.I, she'll put me on prednison faster than I called her. I was on Remicade for a couple years and it seemed to work untill my body recieved an allergic reaction to it. Check with your G.I, there are so many meds out there...just gotta keep going through them until you find the right one.

 

[DustyKat]

Hey Vicky,

I agree with the others re: the pred. As to the B12 and iron supplements I think it would be better to see the doc and have bloods done. The reason I say this is, you will know if you actually require supplementation and if you do they will often tailor the B12 injections to suit your needs initially before you go onto a standard regime. Also in Roo's case some iron tablet supplements suited her better than others.

I don't see that taking fish oil supplements would be an issue.

HTH,
Dusty

 

[vickyj]

Will do Dusty. (wait to see the doctor, that is.) I bought the fish oil capsules, which I started today.
I will let you all know how I get on in September.
Thanks. Vick.