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Young, scared, and Ulcerative Proctitis

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Ulcerative Colitis
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Posted 3/9/2014 5:05 PM (GMT 0)
Hi everyone,


I am 19 and I have been diagnosed with ulcerative proctitis in early Janurary it is now the beginning of March. Before I knew what I had I was just going to the restroom a lot and it was accompanied by blood. So I went to the doctor and I had a colonoscopy done and I had my results shortly after. My GI doctor perscribed me Aspriso 4 pills in the morning. And it worked pretty well. But I went off of it for about two weeks and I was still okay, no pain just a little blood. But then my stomach started hurting more and more, with more blood. Then my menstrual cycle came and OMGsh all hell broke loose. I have to go to the restroom like every 5-20 mins and I have sever cramps. Then my period ended and still more really painful cramps. I got my refill of the prescription since I now had money to buy it. One night they were so bad while I was sleeping that I started to cry. Then the next night I could not sleep on my right side because it hurt so much. Now every night I cramping or abdominal pain and I always feel the need to use the restroom.

Will this pass? I am very scared and feel very alone because my family and boyfriend want to understand but they really have no idea what I am going through. This is stressing me out. Can someone just please give me any advice. I'm new to this.
Posted 3/9/2014 5:23 PM (GMT 0)
Sorry about your diagnosis. It's very important when your doctor prescribes you a medication (especially one that works well) that you keep taking it and do not stop. Unfortunately, UC is a disease that even when in remission, you need to be on a maintenance medication. Are you back on the aspriso? If you don't start feeling better, call your doctor. Lots of people here to help you so it's good you found this site. Best to you.
Posted 3/9/2014 5:40 PM (GMT 0)
I agree with BBUC. I'm sorry you're here but glad you found us!

There is a lot of good advice here. My best advice is to ask for rectal mesalamine and use it in addition to the oral meds.
Posted 3/9/2014 6:30 PM (GMT 0)
I agree with the above. Having proctitis you need to be on rectal meds along with the oral med.
Posted 3/9/2014 6:53 PM (GMT 0)
Hi Zoa, welcome to our group where you can just let it all out!
No such thing as TMI, so ask anything!
I remember before being diagnosed waking up to pain that was unreal! It would be in by whole belly and shoot down my legs. I thought it was worse than delivering a baby! At that time I was still having menstral periods, and it was horrible!
I don't have pain like that often, but once in awhile I will wake up to it.
You have to stay on the meds like the others have advised. If I try slowly tapering my meds, the pain comes back.
I have recently started the rectal meds and have been amazed at how much they help.
You and your doc will get it all figured out, it just takes time.
Posted 3/9/2014 10:26 PM (GMT 0)
I am sorry you're struggling. You really need to remain on your medication to keep the symptoms at bay. I understand how difficult it can be to afford to keep up with medication, especially when you're young and you may not have steady income :( There are programs that can help. I know with Lialda, there is a program that brings copays down to $10. I think there is one for apriso too. You should definitely look into it. You should also ask your GI about rectal medication. Proctitis is best treated with something rectal because it's not easy to reach that area with oral medication.

www.aprisorx.com/apriso/savings-card
Posted 3/9/2014 10:37 PM (GMT 0)
I'm really sorry, I know how you must be feeling right now. =( I was diagnosed when I was only a year older than you are now. It's so scary. I'm so lucky to have a loving family and SO to help me out.

Are you still on your parents medical insurance? Unfortunately you most likely will have to stay on those meds as long as they work for you. Each time a flare reappears it gets increasingly harder to treat, so the best thing to do is to avoid going back into a flare by staying on your meds even when you feel back to normal.
Posted 3/9/2014 11:27 PM (GMT 0)
I'm surprised the doc didn't give you any kind of rectal meds at all with proctitus. Oral meds usually aren't good enough to treat this area. I hope you learned your lesson though that when you find something that works you need to stick with it, forever, meaning the rest of your life, even if you have been in remission for 25 years. UC is always hiding in the shadows, just waiting for you to let up on your treatments and then it can come back with a vengeance, with previous meds often not working or not working as well, forcing you to use harsher and harsher meds.
Posted 3/10/2014 12:34 AM (GMT 0)
Thank you everyone,

I've been taking my medicine everyday now and I will continue to take them. I am in school now and soon it'll be spring break and I am going to visit my doctor. I will ask him about some rectal medicine. Right now I feel like maybe the Apriso isn't working or maybe this is just a really bad flare. This has been the worst week of my life. But thank you all with your advice and support I really do appreciate it. It means a lot to me that you all took the time to respond to me. Be blessed.
Posted 3/10/2014 12:37 AM (GMT 0)
**hugs** sorry you have to join us darlin, but I am glad you found us!!

It sounds like you are slipping back into a flare... and that good ol menstrual cycle decided to up the ante! Pain and cramping can be so horrible with this disease. Not everyone gets it, but girl, I feel you!!

That stinks you went off your meds... they really need to send us home with a stern warning. DO NOT STOP THESE NO MATTER WHAT. ...question is if we'd listen anyways. Well now you will! :D now you know!

Best bet is to get back into the doc and let them know whats up. Getting back on your meds might not be enough now. Luckily with proctitis you can hopefully just add a rectal to your regimen and get back to your life!!

Let us know how the call to the doctor goes. And as Coffeencake said: no question is off limits. Let us know if you need anything! Someone probably has the answer :D
Posted 3/10/2014 12:42 AM (GMT 0)
I am sorry to hear of your diagnosis...your not alone, as someone said, you have found this site, and I dont mind admitting that I am glad I did too, because unless you have the disease yourself, its difficult for others to fully comprehend how it makes you feel...also there are many people on this site that are extremely knowledgeable, and will help you...if you ask.....best to you.
Posted 3/10/2014 1:27 AM (GMT 0)
Zoa...

I rarely do this, but PLEASE do this for me...ask your doctor to put you on Canasa. The retention enemas don't work very well because they usually pass by that point at the very end and go to the left side of the colon...you need something that sits RIGHT AT THE END where the proctitis is.

I've had UC and proctitis for almost 40 years. Proctitis (at the very end of the sigmoid colon right before the anal canal) is VERY hard to treat with oral meds, because by the time it gets down to the very end of the colon, most all of the medicine is gone. It is best treated with rectal meds, and best treated with Canasa, a rectal suppository. I was introduced to that about 10 years go by my doctor, and ever since it has put the proctitis part into remission....no exceptions, daily use, no matter what. It is the best thing ever for urgency and the pain.

Even recently, when my UC was so bad he started me on Simponi, he commented on how amusing it was that I was flared up moderate to severe in most of my colon, EXCEPT for the last 10-15 cm....where the Canasa was doing it's job on the proctitis!!! He saw nothing there.....Easy to use, no problems holding it in, and there is an online coupon for the copay.....try it, you'll like it!
Posted 3/10/2014 4:58 PM (GMT 0)
First, as others have said, never miss your medication. Getting your medication should be your financial priority number 1. Not getting your medication will result in worse flareups that will end up costing you more in the future. Don't ever start thinking that you're feeling better and that you can stop taking your medication - I think EVERYONE thinks that at one point, and everyone goes into a flareup because of it. This disease does not just go away.

The 'will this pass?' questions I ask myself a lot. If you're seeing blood, or if you're in so much pain you can't sleep, you need to tell your doctor.

A lot of times I start thinking "it's only a little bit of blood. . ." but it's important to remember that blood in your stool is never normal, and your doctor may need to change something to stop the flareup.
Posted 6/22/2014 10:38 PM (GMT 0)
Are you all saying you have to stay on these suppositories the rest of your life? I was recently diagnosed with proctitis. It started while on three weeks of doxycycline for a suspected tick disease. I started passing mucus and then blood. Had a colonoscopy which confirmed it. Then a barium x-ray (never again, most vile tasting crap) which showed small intestine not affected. I'm waiting for my order of canasa from a canadian pharmacy as I could not afford it in the U.S. I went gluten/dairy free last week and showed a little improvement on how many times to the toilet, but after the barium x-ray, I am back to frequent trips to the bathroom. Still passing mucus and blood. How long once starting the drug therapy will it take for a remission? I know everyone is different, but I would like to know what to expect about this disease. Thanks.
Posted 6/23/2014 1:28 AM (GMT 0)
Are you taking any other meds? Usually suppositories all by themselves aren't going to put you into a complete remission. UC is a lifelong disease so most have to take some kind of drugs forever. It is a mistake to get to remission and quit drugs because the disease will come back and what worked before often doesn't work again or as well again, causing you to have to take worse and worse drugs. It's way better to take less invasive drugs forever than to go into remission, flare again, and then have to take worse drugs with worse side effects. This is not a disease where once you get better you are home free.
Posted 6/23/2014 6:58 PM (GMT 0)
The suppository is all that has been prescribed for me so far. Have not even met with the doctor to discuss this treatment.
Posted 6/23/2014 11:58 PM (GMT 0)
Make sure you understand your diagnosis-proctitis is possible without having UC. Learn where the inflammation is, and see a Gastroenterologist (GI) for an opinion. Read up on it here. Then post again-start your own thread with what the suggestions are from the GI, and we can guide you a bit. They will probably put you on a maintenance medicine and there is a good chance that with a little time, your rectum will heal. Keep us posted.
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