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Hi, Ive been diagnosed with mild Proctitis two years ago.(had it for around five years) Recently had another scope, they found slight inflammation.. They told me nothing about my condition. After noticing side affects to pentasa, I started researching alternatives. So I'm sure you can all guessa what bought me here.. I have to say, reading all the stories from this site and others has left me very depressed.. I almost feel I've a certain life of misery ahead.. I've been so depressed I can't get out of bed..sometimes ignorance is bliss. From this site I've learnt my side affects are something I have to put up with because I'm pretty much on the safest treatment.. Though I hardly considered them safe. I can't shake the feeling of doom.. I'm sorry if I sound selfish, knowing how greatly others suffer. I can only pray I don't get worst side affects and my condition stays the same.. I've three children I couldn't bare to leave.. Apart from their father we have no one, so I'm putting much faith in God.. ATM I can't talk about it without crying.. I'm not a strong person.. I've suffered all my life with GAD.. God knows I don't cope with my mortality.. Yet here I am. Though I know none of you, I've prayed for us all.. We need a cure. I have an appointment with the CDD in Sydney. I will enquire about feacal transplant.. Don't know that it will be an option.. It may be expensive or I might be considered to mild a case.. Not sure.. Just so happens the Dr that diagnosed my Proctitis works from CDD in sydney, and comes to my hometown to perform colonoscopys. Small world..

"I've three children I couldn't bare to leave"

I'm not sure what this means. Are you talking about death? UC or it's treatments rarely kill anyone. Many people get a mild case and always have a mild case. That could very well be you. Mild cases are obviously easier to treat and it is easier to go into remission. Don't let the stress of it all make you sicker than the disease itself.

Sadly, depression is brought up on the uc forum from time to time. Getting diagnosed with any chronic condition is without any doubt a life changing event and some of us get through it emotionally faster than others. Counseling is available for those who would like extra help getting through it. At first, it was rough for me to know I'd never be cured and have to take medication the rest of my life -- a tough pill to swallow emotionally for a guy in his 30's (and the ASA5's are horse-pill-sized to boot). I'd say that many have had good enough results with the medication to be close to leading normal lives with the inconvenience of rough mornings of going to the bathroom between 1 and 6 times. The medication certainly doesn't work for everyone, some are much worse off and are considering surgery to get back to a more normal state. Everyone is different.

Sorry to hear you're feeling so down. It's completely possible, in fact, it's probably likely that your illness will not progress. I was told it rarely does. Unfortunately, mine did. Perhaps because I wasn't taking medication to control it, maybe I was just doomed and it would have progressed regardless. I wouldn't' worry, that only makes things worse. Try to keep positive for your family and your mental health. Fecal transplant is a great option but it's not a magic cure and it's quite expensive. If it works for you, great!! I personally would be scared to stop taking medication even if I saw positive results with FB. I believe the FB procedure was pioneered in Australia by a Dr. Brody. Maybe you can see him. I've heard of people traveling from the US to see him...

You should really be using enemas or suppositories for inflammation in the rectum. They probably wouldn't cause side effects, it's mostly a topical treatment. Ask your GI for meslamine enemas and suppositories and give them a try.

Omg thank you all so much.. I've had a rough few days. I've suffered for five years, and been on pentasa for two.. I found out about this disease through this forum and Internet. My Dr told me nothing. I only started to question it when noticing side affects..
Such as, acne, ear problems, irregular periods. Joint pain. I found out all about this disease on my own. So you can imagine how depressed I felt, and yes I felt like I was given a death sentence. I felt if it didn't kill me the medication would, after researching side affects I was terrified. Then the realization I had no choice. I took out life insurance so my children would have something. I don't think I've stopped crying for three days. The enormity of it is overwhelming, especially learning from a site where it's mostly severe suffers. I'm
Sorry if it sounds selfish. I am from Australia, and have very close access to the CDD. I have an appointment Jan 31st.. Hopefully I will be a candidate for fecal transplant. My hopes aren't high. I've put more faith in God. I have to try though. If nothing else I'll get to see a decent gastro, instead of the quacks that left me to fend for
Myself self.. Thanks for
Listening

Hello,

I had to chime in here... I was diagnosed with ulcerative proctitis back in 2005. A bit of blood and constipation were my main symptoms... I was in a bad marriage and super stressed out about things at that time... Over the next 5 years, my symptoms got gradually worse, and I ended up going on Prednisone and eventually Remicade... Nothing seemed to help or work for long UNTIL I got out of my stressful situation... I divorced my alcoholic/addict husband, lived alone for over a year, then I met and am with the man of my dreams now, and I've never been better! What I am saying is that stress is a major trigger for this disease and if you are dwelling on it to such a degree, that is not going to help you get better :(  Find a way to get some support or stay grounded in this forum.. it has been a life-saver for me several times.. The people here are amazing and some have been through way worse than I have ever been. My disease is still active at times, but it's at a MUCH lower and controllable level and I FEEL a lot better emotionally which I am sure has an effect on my health overall... Also, UC is NOT a death sentence... Most people can manage normal lives and do everything they want to :D

 

I use 1x 1g pentasa at night

Yes sorry it's a suppository. 1 at night

Hi Petah

I am from Australia like yourself...Sydney (southwest).

It is very overwhelming when you are told you have this disease. I too felt like you last year when I was diagnosed. I have two daugthers and if nothing else it is about the kids as well as the rest of the family.

I have come to terms with it and it does get better, as soon as you have found the correct treatment, it does settle down...but it always plays on your mind.

You have to try to relax as I think this plays an important role in your recovery. It does take a while to find the right treatment. I totally believe the rectal meds are important. They work better for flares than taking prednisone. I was taking the pentasa in the morning and salofalk enemas in the evening. I am currently on Mezavant 4.8mg and 175mg Imuran.

I find this forum so helpful, more so than what the doctors tell you. PS My doctor is pretty good Dr Koo.

Btw I live in Wagga Wagga NSW. Have you visited the center for digestive disease in Sydney Jovana?

Thankyou lodi. I guess I'm more scared about the medications than anything. I use one 1g suppository of pentasa a night. I think I'm in shock, which is weird because I've lived with it for five years, oblivious, until recently. Now the reality has overwhelmed me. :(

OK, Petah. You are getting so much good support on the anxiety issue - I don't have anything to add there, but I agree that stresses in life definitely exxacerbate our illness.

A 1g suppository at night is probably not enough medication to get you into remission. There are 2g and 4g enemas that will cover more of your rectum and sigmoid colon with this medication, and that will be a faster route to wellness IMO. I don't know how easy it is for you to get a new prescription from your GI, but I would recommend this approach.

The rectum and colon do not absorb medications very readily. While some people have side effects from rectal meds, it seems to me that your acne, ear problems, irregular periods and joint pain are more likely symptoms of the illness or other things than they are from the Pentasa. In fact, about 25% of people with inflammatory bowel disease get joint pain.

Hi Petah

It does take a while to get used to the medication. The rectal meds can make you feel gassy also, but it does settle down. They are very soothing and they seem to act immediately, but you have to be consistent with the medication (usually the doctor advises to use it for 6 - 8 weeks). I think one of the tricks with this disease is even if you seem to be better don't be tempted to stop taking the medication. Initially I was overwhelmed with how much I was taking. Prednisone, antibiotics, Imuran, Mezavant. At the same time, rectally I used the pentasa supp in the morning and at night, as well as salofalk enema at night and the steroid enema in the morning. Its enough to send you round the bend...but it does settle..trust me.

I too had so many days where all I could do was cry. In terms of the side effects, I was losing hair...not sure which of the orals caused this...maybe all of them combined, but this has finally settled. Prednisone made me hypo...couldn't sleep (while on the higher doses 70mg....100mg x 4 times a day, via drip in hospital). The worst side effect which was from the prednisone was that I developed pneumonia, pericarditis (inflammation around the heart) and worst of all a blood clot (which thankfully resolved on its own) in my lung. Prednisone is the worst. I am scared of the Imuran...what it might potentially expose me to picking up other infections.

I ended up with my doctor through the hospital. I have had no need to go anywhere else at this stage. I am very confident with his choices so far. Even the doctors are guessing with what will and won't work. There is no exact medication which fits everyone. I am glad mine did not opt for the remicade which was a choice while I was in hospital.

You have to be as well as you can for your kids...show them you are strong even though you are being thrown a tough situation. It is a good lesson for them. It is hard on them also seeing their mum sick. I will never forget when my six year old starting crying the second time I went to the ER. You have to trust that you will get better...half of the recovery is in positive thinking and try to eliminate from your diet what you think affects your situation (very much trial and error).