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Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
Hi im gracie
- Thread starter gracie89
- Start date
Hi Gracie and welcome,
I also have a beautiful Grace. She's the one with Colitis, not me.
Please have a look around and ask a lot of questions.
So my Q's to you are.......
Where is your Crohn's located?
How is Imuran working for you? An side effects still bothering you?
Have you had your vitamins checked? I lot of IBD'er are deficient in these.
I also have a beautiful Grace. She's the one with Colitis, not me.
Please have a look around and ask a lot of questions.
So my Q's to you are.......
Where is your Crohn's located?
How is Imuran working for you? An side effects still bothering you?
Have you had your vitamins checked? I lot of IBD'er are deficient in these.
Cat-a-Tonic
Super Moderator
Hi Gracie, welcome to the forum. I'm also the only one in my family with IBD (except for my aunt, but she's related by marriage). It can get lonely and isolating to be the only one. I hope you get good support from your family and friends. Hang in there, I hope the medications work well for you and are helping you feel better!
nogutsnoglory
Moderator
Astra
Moderator
Hiya Gracie
and welcome
You're no longer alone with this, lots of friends here for you, any questions, don't be afraid to ask.
Spend some time mooching around the sections on here.
Or try the Crohns and Colitis UK
http://www.nacc.org.uk/content/home.asp
Lotsa luv
Joan xxx
and welcome
You're no longer alone with this, lots of friends here for you, any questions, don't be afraid to ask.
Spend some time mooching around the sections on here.
Or try the Crohns and Colitis UK
http://www.nacc.org.uk/content/home.asp
Lotsa luv
Joan xxx
hey gracie, sorry to hear about your recent diagnosis
i too am the only one in my family who has it (of the family i know anyway) and they have been very supportive of me, it might be worth your close family reading this section.. http://www.crohnsforum.com/forumdisplay.php?f=90 lots of useful information for families on how to deal with another family member with Crohns.
try and keep stress to a minimum if you can, which im sure as a new mother wont be easy, but hopefully your family can help you out!.. stress is a very big contributer to a crohns flare up for most people with the disease, so less stress is good!
also, a low residue diet, have you been told about that? basically reduce your fibre intake so food can pass easier through the bowel.. at least until the drugs start working and get you better which hopefully they will do!
Anyway, i hope you start feeling better soon! and if you have any other questions there is always someone on here who can help you, you have definitley come to the right place
i too am the only one in my family who has it (of the family i know anyway) and they have been very supportive of me, it might be worth your close family reading this section.. http://www.crohnsforum.com/forumdisplay.php?f=90 lots of useful information for families on how to deal with another family member with Crohns.
try and keep stress to a minimum if you can, which im sure as a new mother wont be easy, but hopefully your family can help you out!.. stress is a very big contributer to a crohns flare up for most people with the disease, so less stress is good!
also, a low residue diet, have you been told about that? basically reduce your fibre intake so food can pass easier through the bowel.. at least until the drugs start working and get you better which hopefully they will do!
Anyway, i hope you start feeling better soon! and if you have any other questions there is always someone on here who can help you, you have definitley come to the right place
hi all thank you all for your kind words I was back in hospital last week and was told they think i may need my small intestines remove(or part of them) they said that is were most of the crohns is an alittle in my stomach they said i will need injections for my stomach and that removing my intestines should stop most of the pain has anyone else had this done ? my mams not to happy about the idea but i figure anything is better than everyday pain
Not sure how sever your pain is, but surgery is definitely the last option and only used if you got strictures.
How long have you been on entocort? That's not something you should take in the long term. How long have you taken imuran and what dose at what body weight? if not that long, you can't know yet if it works.
Has your GI talked to you about biologics or imuran/biologics combination therapy?
im on the entocort since dec 12 and the imuran since dec 12 also the pain seems to be getting worse rather than better and went from pain every day or 2 to pain every single day so bad i find it had to stand sometimes. no i havent heard of that before. the doctor didnt seen to have any other options for me other than surgery he just said its spreeding very fast
Hi Gracie, basically when you treat Crohn's you have three broad categories of drugs used for treatment.
First, you have cortisteroids like entocort and prednisolone which are used to fight inflammation short term, but should not be taken long term. You normally start with a high dose such as 40mg to 50mg if you got big problems and then lower it step by step mostly on a weekly basis.
Imuran (that's the brand name, the drug is azathioprine) or 6mp is an immunsuppressive drug that is used in long-term management of Crohn's and is effective (gets them into remission without significant symptoms) in about 1/3rd of the patients. It only kicks in fully after 2-3 months, so it still might work for you as you haven't been on it very long. One important thing is the correct dosage, it's about 2mg to 2.5mg per kg body weight. The daily dose should be split into half in the morning and half in the evening. How much do you take?
Lastly, the most effective drugs to treat Crohn's are biologic TNF-a blockers. The most common one used in Europe is infliximab (remicade is the brand name). The other common one used is adalimumba (humira is the brand name). Cimzia, which is approved in the US, isn't available in the EU. Those aren't pills but remicade is given via iv at the beginning every 2 weeks and later on ever 6-8 weeks. Humira is self injected every few weeks. Biologics are effective in 40-50% of the patients.
Lately doctors have advocated combination therapy of immunosuppressives and biologics as this, in one larger study in 2010, has been shown to be effective in nearly 60% of the patients, especially people who have been diagnosed recently (last 2-3 years). Here is a recently article on combination therapy http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3380260/.
Of course, just as imuran, biologics can have side effects, but compared to the pain and effects of Crohn's they are a (small) risk worth taking.
I have to still say I completely puzzled by your doc saying your only treatment option is surgery. If it is inflammation that you are battling with (and not strictures that might lead to dangerous blockages) then having surgery is absurd before treating the Crohn's medically. I would definitely ask your doc soon about biologics and if he doesn't know much about them, you should consider switching your GI.
I hope that helps a bit as an overview, I know that an active Crohn's is really bad and in the years after I was diagnosed I also had months with daily pain. There are options you can still try and there is definitely a very good chance you can get much better.
If you have any specific further questions, just ask - one thing I learned in my 14 years with Crohn's is that information about the disease is a powerful thing to manage it.
Jim (POPS)
Jim (Pops)
- Location
- Antioch, Ca
Hi Grace. I'm so sorry you are going through this. Yes, I have had 3 surgerys for a resection of the small intestines. Alot of people here will say try to avoid surgery at all cost. I'm not one of them. Every time I have a surgery I am much better afterwards. I can put a person into remission. I also take Imuran and it has just started working for me. I've been taking it for a little over 3 months now. It can take up to 6 months to get the full effect though. I sure hope you feel better soon.
Jim (Pops)
Jim (Pops)
Jim, it can put you into remission in certain cases, correct. But you also need to add that it leads to short bowel syndrome, potential chronic malnutrition, new inflammation problems long term at the position where the resection is performed etc.
When I had my only surgery in 2003 it was because of 2 strictures. It wasn't a decision taken lightly, actually the surgeon was against it saying we hadn't exhausted all non-surgical options (he was probably right, but I was scared of a potential blockage and was in big pain PLUS my GI back then sucked and didn't even put me on aza before - remicade wasn't really commonly used back then)
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Artisan105
Yondaime
Alex is so great. lol He always gives very informative posts
Thanks for putting in the time and effort to help others.
Artisan105
Yondaime
Welcome to the Family
I would respond with some informative comments but everything has been said properly. If you need any help or someone to talk to, everyone is here to help- me too Have a great day.
Artisan105
Yondaime
Keep us updated
I would ask your GI about remicade and humira. And a GI who doesn't explain things to you is usually not a good GI. You need to know what's going on and why certain decisions are taken.