Crohn's Disease - alternatives medicines to surgery

[hana26]

Hiya.

I'm 25 years old and have Crohn's Disease/Ulcerative Colitis.  I was diagnosed with UC in 2006 but since going back to hospital they now think I have Crohn's.  Unfortunately they can't decide which it is as I was in too much pain to investigate further.

I've recently been to hospital with another flare up and the hospital want to do surgery and remove my whole bowel if my current medication does not work.  I'm on 50mg of MP6 (mercaptopurine) and Asacol tablets (currently on steroids as well but weening them down).

I know that I mentally would not be able to cope with the surgery and would find it too hard to deal with so this really is not an option for me.  I'm thinking about getting a second opinion and going private to see if there is anything else available, but have just come across this website and wondered if anyone can recommend any medication etc that I can look into before having to discuss surgery?

Please help,

Hannah x

[Ogz]

Hannah, that is wonderful news!!!  So glad that they are looking into other options.  Unfortunately you're right, had you not mentioned it you would probably be looking at surgery.  It's sad that they go so quickly to that now a days instead of trying different treatment options first.  Surgery should always be your very last option, always!  I hope that one of those medications works for you and you do not end up having to have surgery.  I wish you the best of luck with everything and hope everything works out well for you.  If you ever have any questions or just want to talk feel free to send me a message  =)   Take care!!

- Danielle

[hana26]

Thank you both so much! I do live in the UK (in Wales though) :-)

I have spoken to my specialist today and mentioned the medication you have both recommended and she has said that is something we can look into! So fingers crossed, it will work for me!  I'm so glad to have heard from you both as I think if I had not specifically mentioned this, surgery would have been the only thing left to discuss.

I hope you are both feeling well soon and keep smiling! xx

[lizziecee]

Hi Hana - first of all, where do you live? I only ask because you mention "going privately" and suspect you live in Britain. In the US the majority of people have private medical insurance, and indigents get Medicaid.

I would seriously ascertain if you do indeed have Crohn's as well as colitis. I have Pan Crohn's/colitis - which means I have Crohn's in my small intestine as well as the large colon. Crohn's is very different to UC - although both are inflammatory bowel diseases, and although some medications overlap, the surgical interventions are very different. UC affects only the large bowel, and the innermost layer of the colonic mucosa, whereas Crohn's affects all three layers in both large and small intestines and can cause fistulas into other organs.

I have had Crohn's for 40 yrs...took huge amounts of steroids for 25 yrs, as there were no other medications that kept my disease in occasional remission. However, I was on methotrexate (initially tablets, then self administered injections) for 9 years, but these also failed to work eventually, and last year I had my first surgery. It was a "right hemicolectomy", with the last part of my small intestine, terminal ileum and first part of the large colon removed. It was major surgery and I was in hospital for 2 weeks. The reason for the surgery were strictures in the colon and multiple ulcers/abscesses in the small intestine. I did get slightly better and managed to put on a little weight (I was on nightly 10 hr tube feeding for 2 months before the surgery) but had a huge flare some 4 months later, again hospitalised for 2 weeks, and started on Infliximab (remicade).  I have now been on these 8 weekly  infusions (in hospital as a day patient) for almost a year, but my gastro said they will discontinue them in July to see if the Crohn's flares again. I was horrified, but there is little one can do except accept the Consultant Gastr's advice.

You may wish to discuss methotrexate and/or infliximab with your gastro before making any decision about surgery. My health is a lot better, but I now have "short bowel syndrome" due to the resection, and have diarrhea within an hour each morning after first eating. Think I can live with this - there is not really an alternative.

If you live in England, please contact me further - I have two wonderful Consultant Gastro's and if you are not within our area (Cornwall/Devon) I am sure they can recommend a good gastro near to where you live.

Take care,
Liz.

[Ogz]

Hi Hannah,

            Have you talked with your GI doctor about Remicade or Humira or any of those types of medications?  My GI doctor told me they are the strongest on the market and the last option medication wise before surgery.  I was on remicade but unfortunately my crohn's was too far gone along with other complications so it was not working so I had no other option but surgery.  Remicade is done by an infusion which takes about 2-3 hours.  It can be boring but if it keeps the surgery away it is definitely worth it.  Also, if your doctor does decide to go that route I can give you the website of a place that will help you pay for your infusions (the amount is ridiculous even with insurance).  But I would definitely ask my doctor about it if I were you.  I hope that this helps, if you have any additional questions please feel free to ask.

- Danielle