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no medication after surgery??

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Crohn's Disease
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Posted 11/5/2009 12:47 AM (GMT 0)
Before I was discharged from the hospital (resection surgery Oct. 13th) I spoke to the surgeon (I live in a rural area and the hospital I had my surgery does not have GI's on staff) about maintenance meds and he said that I didn't need to be taking anything as there was no research to suggest that maintenance meds actually help with preventing (or prolonging) recurrence?????

I've done a lot of reading of posts on this site as well as others and from what I read I really feel like I should be taking something because I certianly want remission to last as long as it possibly can. 

I am scheduled for an appointment with a GI in Jan. and I am hoping that he will prescribe something in terms of maintenance.   In the meantime, prior to the surgery I was taking pentasa and my prescription is good for much longer on those...I've resumed taking those even though I didn't discuss this with any doctor...bad idea?

 

Posted 11/5/2009 1:01 AM (GMT 0)
I you have Crohn's then I completely disagree with what your doctor said, but admittidely most of the maintenance meds I have tried (Asacol, Pentassa, Imuran) have been completely useless for me and have sometimes made things even worse. Some people actually do pretty well on Imuran, 6MP, and Methotrexate. If I were you I would try the SCD and combine it with LDN. Now is the perfect window of opportunity for you to ramp up on LDN because you are presumably in remission and are not taking any other meds.
Posted 11/5/2009 1:26 AM (GMT 0)
sorry for not being more specific :)  yes, I do have crohn's....narrowing in the portion of the bowel that was removed, was always the problem....led to frequent obstructions...

I have been eating...well in some respects, pretty carelessly...mostly all types of foods...   However, the last things I want is for the remission to be short lived....I have looked at the SCD, but I'm not sure I could manage or stick with a diet like that...

Posted 11/5/2009 1:46 AM (GMT 0)
If the diet is not an option for you I would not walk, but run, to your doctor to see about LDN.  From what I understand it has basically the same toxicity as asprin.  That is to say it is basically non-toxic and, in clinical trials, has been close to the effectiveness of prednisone.  If you are not taking anything right now as maintenance (and are not doing anything special with diet) that is sort of the equivalent to standing in the middle of an open field with your pants around you ankles -- an invitation for something to bite you in the ass!  All of this is just IMHO of course :-)
Posted 11/5/2009 4:17 AM (GMT 0)
I just had surgery a little over a month ago. My surgeon said it was okay to stop the Humira, but that I should stay on a maintenance drug (Pentasa, in my case). He said the meds you're on after surgery have a lot to do with how your incisions heal and how the scar tissue forms. I guess doctor's tend to have differing opinions.

EDIT: SCD really isn't that hard to follow. But if you go with LDN, you'll need to at least follow an anti-candida diet. I've read that it's important for the LDN to work well.
Posted 11/5/2009 1:23 PM (GMT 0)
I was on Pentasa, 6MP and varying doses of Prednisone after my last resection, heck after all of my resections. Eventually the Pentasa stopped working for me and I added in Xifaxan instead, but this has been the magic combo that has kept me out of the operating room for the last 12 years. I am a firm believer in being on some maintenance medication or combination. What caused me to have 3 re sections in such a short period of time, no maintenance drugs, pure and simple. I believe that diet is important and can help you feel better, but it can not stop the microscopic damage that is being done. I spent 10 years unmedicated because I was undiagnosed. I at a very healthy diet and restricted my food intake to only foods that didn't bother me. I actually felt pretty good during that time, but the disease was working its magic and it took 3 re sections to get things under control.

Can you call your GI and ask for advice? I would not be going on the word of a surgeon, I would want to speak with a GI. And if I couldn't talk to my doctor, I think I would start the Pentasa on my own until my appointment. Since it isn't like Prednisone and you can just stop it, there is no harm done if the doctor wants you on something else.
Posted 11/5/2009 2:23 PM (GMT 0)
My personal opinion is go ahead and take the Pentasa, it can't hurt. I am a firm beleiver in maintainence meds, as I learned the hard way what happens when you don't use them. After my first resection, I was not put on maintainence meds and was basically told the same as you, "oh, you shouldn't need any meds now that you had surgery". WRONG!! I ended up having to have another resection 3 years later. I am only maintained on Asacol right now, and have been in remission for awhile. I will never be med free again, the consequences have been too painful for me. JMHO

Hugs
Gail*Nanners*
Posted 11/5/2009 7:13 PM (GMT 0)
I had a resection last feb., i was told to continue my asacol cause that will help to make sure I don't get colon cancer. I also was told to stay on remicade it would help me stay remission.
Posted 11/5/2009 7:41 PM (GMT 0)
Hi, I was also told i wouldn't need to take anything by my GI's sidekick i had to literally demand somthing i am now on Pentasa if i was you i would continue with yours till you get to see your doc. Bev
Posted 11/5/2009 11:05 PM (GMT 0)

Hi CN1980,

I recently had a small bowel resection (7/30/09) due to stricturing from Crohn's, and my GI doc said I should ABSOLUTELY resume maintenance medication.  To give my body a chance to do some healing post-surgery, he had me start up my meds again about one month post-op.  My "maintenance medication" is Humira every other week, as I'm allergic to everything else.

Good luck!

 

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