Proctitis (UC) story; now on Azathioprine for weeks now; patience or other options?

Hi Everyone,

I am new to this forum (well signing up anyways). I have been reading so much on this forum in the past months and I finally decided to post my story. I am 23 years old and I have always been a pretty healthy guy, but about 5 months ago, I started having symptoms like mucous went I went to the bathroom (sometimes just mucous). At the time I didn't even really know about colitis (and other related diseases, such as proctitis). It was when I started noticing the blood that I got scared. Naturally I called my GI. My mom actually has this rare form of micro-organic colitis (not related to mine), so I went to her doctor (super nice guy by the way and has been very helpful and patient (no pun intended!). Anyways, I have gone through the usual: colonoscopy - diagnosed with proctitis, tried canasa, then lialda, was on prednisone to get my bleeding down (which helped), but at the end of my prednisone taper, my doctor wanted to see if lialda would be a working maintenance drug (4 lialda pills at 1.2gm each per day) but sadly it didn't really do anything. He talked to me about Azathioprine (Imuran generic) and I have currently been on that for 4 weeks now along with still taking the 4 lialda pills each day. I have noticed that my days are all over the place: some days I have a pretty good day, little to no mucous, and little to no blood. Other days I have mucous that comes out by itself, along with slight blood. Some days it seems like all of a sudden no mucous and a few blood drops. It is weird and I can't seem to pinpoint certain things. I tried reworking my diet (although I was probably impatient with waiting to see if something works over a long period of time) and no real changes. I cut caffeine, alcohol, seems to make a difference sometimes and sometimes not.

So here I am now, currently 4 weeks into azathioprine (blood tests look normal), and I don't know whether I should be more patient (I have heard it can take months - but I don't really understand why it takes so long), or to try other things. I have taken probiotics sometimes, but they don't seem to do much (again I am very impatient I guess) but I have recently discovered and have done a lot of research on a few remedies: VSL3 probiotic, alkaline diet, and those other strict diets. Let's face it, I know life doesn't revolve around food, but having a strict diet doesn't just mean staying away from foods, it means having to avoid social things because you can't eat certain things, you can't have a drink, you can't eat this, you can't eat that. I am willing to have to suffer for the rest of my life, it is just scary not being able to see what goes on every day inside my colon.

Does anyone have any advice: should I still be patient with the azathioprine? Does it take this long? (again my blood tests are completely normal and I have no real side-effects from it). Should I try VSL3? Has that worked for people? I am willing to pay the 60-odd dollars per month for this if it is going to change my life, I guess I am just nervous to spend that initial 60 to see if it works or not, it could end up being a waste. I have read basically miracle stories with that stuff. Should I even bother with a diet change? Is it worth it?

Any and all advice will be appreciated. I have such more sympathy and appreciation now for people who have internal diseases that no one really knows about. It may look like we are healthy people on the outside, but living with stuff like this is not easy. I'm really happy that there are a lot of people on this site that just UNDERSTAND what we are all going through. It is almost another home, if that doesn't sound weird. We are all here for each other I guess.

Thanks,
Mark

Thanks for your reply. Yeah it does seem to be very stubborn. I have also take hydrocortisone steroid enemas while on prednisone and like I said that seemed to get me down to normal bowel movements and no blood, but of course we sadly can't be on steroids forever. I just want to find that one thing that will keep me maintained.

What is everyone's take on VSL3 probiotic? I am really considering trying that out next while still on azathioprine. I have done a lot of research and know that research is being done on the causes of these inflammation diseases and they talk a lot about good bacteria being killed by our cells (when they shouldn't be killing it) and probiotics like VSL3 are the only probiotics to have enough potency.

Hi Mark -
Welcome!
I believe the azathioprine takes a number of months to be helpful. So, yes, patience.

Some kind of rectal meds ought to be helpful in the meantime. The ones based on 5 ASA, canasa suppositories or Rowasa enemas, would have the least side effects, but otherwise there are the steroid ones, and since the rectal meds work topically, not much is absorbed.

I take VSL and have for some years now. At this point I just take it. But 4 -5 years ago, I was flaring semi-badly and experimented with myself; I found that it really did help me. It, too, was slow... it seems to me I took 4 doses a day for 6-8 weeks. I had kinda stopped taking it about 6 months ago, and indeed I have had some inflammation. Is this related? Who knows? lol But I have resumed taking it on a regular basis.

There are a lot of probiotics out there and people seem to respond to different ones - or don't respond to them at all. One of the frustrating things about this whole disease is that we are all so different in how we respond to medications, food, etc!

What I have found over the years is that when I am flaring I need to really watch my diet, and it's not really a hardship because if I eat "dangerous" foods or drink I feel lousy! So it feels pretty normal to eat gently when flaring, and then branch out when my gut is quiet. (I don't go wild, but I can enjoy myself enough that I don't feel deprived.)

I'm sorry you've had to "join the club" but I am glad you have found us!

Azathioprine can take up to 3 months to kick in. If you "only" have proctitis I'd add enemas also. I hope you get better soon. Btw I'm in remission with azathioprine.

Took 3 months for me. I was also on uceris and cortenema. I also did the spinach and sunflower seed diet. Later I was able to stop all that and stay on aza only. When I do see mucus I grab a cortenema and CCherbal. Been doing well with this regime so far.

"Mesalalmine enemas (non-steroid) would be the best thing you can do for your proctitis, especially bleeding. These enermas can be used indefinitely (unlike steroids) and reach much more area than suppositories."