Surgery

[Bloom]

Hi All,

Its been a while since i last posted a comment and things havent been too good for me! I have been having this flare now since june 2010 and can not seem to get better with all the meds and tips i have been given. Even tho i have only been diagnosed in oct 2010 that i have crohn's disease i have been suffering around ten years now since i was 16! I am currently on prednisolne 8mg starting now tapering 5mg per week, puri-nethol (mercaptopurine) 50mg per day, calcichew. Thats just a brief history as i would like to ask some questions any anwsers would be great.

First question has any body been given Puri-nethol ( mercaptopurine ) all i no is this med is given to people who have cancer?

Second question is i have now been told that there is no more that they can do for me other then have surgery, they reckon i need two feet roughly 60cm of intestine thats attached to my bowel that needs to come out!

I have never had surgery and do not no what to expect i am meeting my surgery teem in two weeks and will be told for sure what to expect but as many of you have been through this i would like to hear from you and if you could give me any advise, tips anything really to help me that would be great.

If you want to ask me any questions please feel free if it helps in giving me advise.

Thanks alot,

Love Karen.

 

[handle]

Hi,
Mercaptopurine is given to Crohns patients quite regularly. It's used at a lower dose than for cancer patients - to adjust the immune response. The dose you are on is very low. It can be a very good maintenance med.
Have they talked about the newer meds like Humira and Infliximab? I would think they would try those before surgery. People often have really good results from those drugs.
I don't know where your Crohns is located, or how severe it is (obstructing?) - sometimes surgery is necessary.
Hope you get some more answers. Good luck.

 

[Bloom]

Thank you Handle for your reply!

Yes they have spoke about the new meds but i have tried humira and that didnt go too well it effected my pancrise so i was taken off that pretty quick... I have tried all the other meds some made me sick and gave me some side effects but no relief! I just met with my specialist team and i tink they spoke about Infiximab is that the newer drug that goes into your arm by drip? If so they were going to try me on that but my white blood cells are too high so they said there was no point as this drug was more for maintenance.... My crohn's is located in my intestine and bowel and the part they are going to take out is the last peice of my intestine that is attached to my bowel, as far as i know there isint any obstructions but the thickning is bad enough. I have been given a date 4th November thats when i will have my operation arrrrrrr!!! Have you had this surgery done? I dont have a clue what to expect yet i am meeting with the surgery team in two weeks to find out for sure but am just wondering in the mean time what i am in for..... Thanks for your reply hope your keeping well.

Love Karen.

 

[Crohn's 35]

Hi Karen, I know how you feel and given what I went through with the remicade it may not be as good for you, I too have reactions to all meds. Mercaptopurine started to affect me within a week, so I had to go off, was affecting my liver.

I have had 2 resections. I dont have much Ileum left and had 2 separate resections. If you can have it laproscopiclly it is way less invasive. Surgery can be a blessing for most. You will have to be on something after the surgery but a low dose of a medication so you dont have a reoccurance, because it can come back. My Gi says that 2 weeks of Flagyl before and after really makes a difference.

For pain options there is and epidural and or morphine, either way they make you comfortable as much as they can. Depends on where the surgery is and how it is done. :hang: try not to worry but it is hard to do I know. Keep us posted ok?

 

[Feather]

Karen,

Hello! Sorry to hear that you've been having a hard time. I am also taking 50mg of mercaptopurine. It's definitely a scary drug, but I think it has been helping me. I have been taking it for a little over a year. Although I did require surgery (due to an obstruction and scar tissue) about 5 weeks ago, mercaptopurine has worked well as a maintenance drug since then.

I had the same surgery as you're describing. Definitely see if you can get it done laparoscopically, because it will make recovery much easier. Push your surgeons on this one, too--if they say they can't do it this way, make sure they give you a good reason.

Stay strong! Most likely, you will feel much better after you've recovered from surgery, so you can look forward to it! I am 5 weeks post-op, and I definitely already feel better than I did for years before surgery.