Adam1980 said...
Its a complicated question, "have you ever gone into remission without med." Short answer is yes. I have gone into remission without meds and lasted for a while. Like, I would be in a flare for 6 months and than boom, get better. That has happened. Now, that does not mean it was a good idea and over the years, i now know its a terrible idea to do that, because of all the complications that come from doing that over and over. Its just not good for your colon to be that angry, for that long. Lets remember, that this is going to be with you until you die, so making sure your colon is healthy, for prolonged periods of time is important (u only get one colon :)). Only proven way to do that is by being on these maintenance meds, aka, the biologic's. There is no magic diet or pill. If there was, someone much smarter than people on this forum, would have done a study and proven it.
As far as the side effects, I will talk about Humira, since thats what i have been on now for 6 months and have done the most research on. Humira has been on the market for 10+ years. Below is a link on a 10 year safety study of 20k+ patients. You can read yourself, but basically the chances of serious side effects is tiny and in fact pretty close to what you would expect in the general population. My doctor puts it like this. Chances of someone developing a rare cancer is 1/10000, well, chances of developing that rare cancer once on humira is 2/10000. So as you can see, you can interpret that result is saying, well, im twice as likely to develop it, if i take humira or you can look at it like, those are still astronomically small odds.
As far as why imuran it didnt work, basically 10%-15% of people are allergic to it. I was in that category, I dont know the biologic reasons behind it. I suppose as with any medicine, some people just dont respond to certain things.
http://ard.bmj.com/content/early/2012/05/18/annrheumdis-2011-201244.full
Makes sense. Some of them do concern me, like an increased risk of skin cancer because my mom had skin cancer so even if the general populations risk is low mine is relatively high (I'm very pale too). I've already potentially screwed myself with medication as my doctor thinks (and a lot of anecdotal evidence suggests) that my use of Accutane may have caused colitis/crohns. Last thing I need is another medication causing cancer or something else bad.
Also, as for the increased risk of infection, I have an invasive surgery scheduled on 12/23. Gynecomastia + liposuction surgery for pubertal gynecomastia. Should I be avoiding taking these medications until that's over with?
BRelaxed said...
Hydrocortisone enemas are usually something that don't get rid of a flare on their own - you need to hit this thing from multiple angles. It is possible for a flare to go away on its own but not likely. Again, it will take longer than with meds and the inflammation will be worse which you do not want to do.
There will be problems that come up with meds that are not forseeable. They pale in comparison to the problems of long term crohn's not treated adequately. My side effects from 6mp are not significant because they are not even close to every day and usually only one at a time. Most days I feel fine and the closest to normal since I was diagnosed. Skin sensitivity with rashes/eczema happens every once in a while.
After one med fails, you try another one. No options are good options but anything that works for a while is better than nothing. Eventually, if you're inflammation is too bad or colon is too beat up, or no meds left you have surgery - a resection or colectomy or similar type with an ostomy bag. I used to think like you before my crohn's got worse and thought about delaying treatment because of long terms complications. It's the wrong choice. You're actually hurting your long term prognosis by not treating your disease adequately right now. It's the people who treat aggressively from the beginning that get to stay "normal" for longer because they had less inflammation/symptoms early on.
Also, why the hell are you eating whole wheat pasta in a flare? It might have been not that bad but it's certainly maintaining your current inflammation. This is what I mean about priorities, eat low residue - look it up.
Unfortunately my doctor said she wouldn't prescribe me any new medication until I got the blood work :\ she should have those results in a few days.
Have you had any hair loss from the 6-MP?
There are surgeries without having to get the bag right? At 23 I cannot imagine having to have that bag for the rest of my life and would rather be in the pain I'm in now than have that honestly. Also, maybe a stupid question but why can't we just get the area of the diseased colon removed? Because of all the inherent complications with surgery? I mean a one-and-done surgery seems better than 50+ years of various harsh medications but I'm sure it's not as simple as that.
As for the whole wheat pasta...yea, dumb. I woke up 3 times with diarrhea last night and 3 times this morning. I was eating white pasta and white rice but ran out. Not too many good foods with me, all my fruits and vegetables are going bad lol. Today is probably just going to be chicken, avocado, peanut butter and eggs with some Parmesan cheese. I have a bunch of cottage cheese too but I know most would say that's not the best idea.
Lastly, do you guys have any confirmed evidence about
Crohns Disease lifespan? Obviously quality is lowered but are we able to live as long with the meds and surgery? I would love to hit 85+ like a number of my grandparents have but I never really hear about
very old people with Crohns? I imagine dealing with it is much more troublesome the older you get.