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Help! Understanding Proctitis??

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Ulcerative Colitis
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Posted 10/17/2013 6:37 PM (GMT 0)
Hello

I have been flaring for over a year but was only diagnosed in April.  I was diagnosed with Ulcerative Procitis and my doctor said it was only the first few inches of my rectum and assured me it was nothing major.  I was initally started on Canasa Supps but my bleeding continued to get worse.  I was then put on Lialda and Canasa and saw very little improvement.  I was then placed on Lialda and Pred and was still not in full remission.  I eventually stopped all medication to try taking natural supplements.  I found remission for 22 days, the best 22 days I've had in the past year, but I've been flaring again for a few months.  I've seen two different docs and neither of them are helpful.  All I keep hearing is that my disease is mild.  I completely understand I have the disease mild because of how little is infected, and my heart genuinely breaks for those with this disease much worse, but my quality of life has decreased significantly still.  I'm in constant pain, I miss work a lot, I can't make plans because I can't keep them, I've had two accidents, I've had countless times of passing gas and leaving a puddle of blood in my pants, I have joint pain that keeps me from moving as much as I'd like, I have to run to the bathroom, and I have these gross sores in my mouth (currently they're pretty small, thank goodness).  Anyways, my whole point to writitng this is seeing if anyone else has "mild" proctitis that isn't responding to treatment.  I don't want to live the rest of my life feeling like this.  I want my old life back.  I'm seeing a new doctor on Nov 7th so I'm hoping he takes it more seriously than the last two who just threw their hands up when I didn't respond well to the medication.  I want a doctor who will try another course of treatment for me and see my point that while it is mild, it's still horrible to live every day like this.  I'm hoping some of you have more insight for me.

Thanks and I hope all of you are feeling well today.

 

Posted 10/17/2013 6:50 PM (GMT 0)
Hi and welcome to the forum! I can relate to your story in many ways. I also have proctitis and my flare lasted almost a year as well until I got diagnosed and found treatment that worked. From what I learned on this forum the rectum is the hardest part and usually last part to heal. I was also initially put on canasa but it didn't work. When the doctor added an oral medicine I did see improvement. I do know that the different mesalamine drugs work in different areas of the digestive tract. I'm not sure where lialda releases in the digestive tract. You may want to try another type of oral medication. You may also want to ask your doctor for a mesalamine enema. It reaches more of an area and at a higher dose. From what I have learned the canasa is more for maintained rather than reaching remission.

Have you tried any diet changes. Everyone is individual but a food journal may be helpful. Also dairy is a problem for many with UC. You may want to try to eliminate that first.

Also, if you add your current meds and any meds or supplements tried into your signature others will be able to offer you better advice. Good luck and things will get better. It takes time.
Posted 10/17/2013 6:54 PM (GMT 0)
I think you have more than mild proctitis. What natural supplements did you take that put you into remission for 22 days? Unfortunately, I think you are expecting too much out of the docs. This is a disease where they don't know what causes it and there is no cure. There are other treatments you can take but they are harsher than what you have done so far. They can often work to help put you into remission but they do have risks to them and from the tone of your posts they might seem a little too much for you. Maybe I'm wrong. There are no doctors with magic cures. Have you done any high powered probiotics or tried any diet changes?
Posted 10/17/2013 6:55 PM (GMT 0)
Thank you for the response. I have tried diet changes, I notice gluten to be a problem, however recently I've been having a very bad burning pain under my ribcage and I've been very nauseous. Bread and pretzels seem to be the only thing that give me mild relief. I avoid corn, soy, and anything with preservatives. The only dairy I get is the occasional greek yogurt, but I use rice or almond milk for everything else.

I did have my medication in my signature but it's changed so many times. I'm currently taking Tumeric, Vitamin D, Slippery Elm, Psyllium Husk, and VSL #3 DS.
Posted 10/17/2013 6:56 PM (GMT 0)
If meslamine-based medications (Canasa and Lialda) aren't working for you then it is time to move up the medication ladder and try something stronger. Ask you GI about trying a corticosteroid enema (E.g., Proctofoam) for short term use to see if you can knock the inflammation down. Immunosuppressants are also an option (6mp, Imuran, Aza) but take several months to build up to therapeutic levels. Best of luck!
Posted 10/17/2013 6:59 PM (GMT 0)
Psyllium Husk seems to help some but I suspect that it makes others worse. Are you sure that it is helping you? Turmeric and Curcumin are kind of the same thing. Fruits, raw veggies, and nuts of any kind make me worse.
Posted 10/17/2013 7:00 PM (GMT 0)
I loooove how doctors refer to our condition as "mild" while we are struggling daily to get through the day. Don't you wish you could zap them with a little "mild" and see what they would say then? "OMG OMG this is horrible."

Sorry you are dealing with it (as we all have).

I can relate to your non-response to meds because that's mine also. However...mesalamine enemas have been effective for me for bleeding while nothing else (except diet modification) has worked. I highly suggest you give them a 30 day try. No they are not the same as those dinky Canasa supps. Enemas treat more area in a much better way. If your doc says anything other than "Yes" get a new doc. Seriously. You need a partner in this, not a know-it-all, cause they don't know it all.

Gas (for me) come from certain foods: dairy, fruit and juices, anything with sugar really. You could cut these out for 2 weeks and see if you have less gas. Since healing I've been able to eat a little dairy but no sugar/dairy/fruit after 5 pm or it's a bumpy night.

Good luck. (and get those enemas started nightly asap. There's a learning curve to using them but if you want to get better you'll learn).
Posted 10/17/2013 7:05 PM (GMT 0)
Hi Gary,

I just changed my signature because I've changed my medicaiton and diet. I've only recently started the Psyllium Husk and haven't seen too much change. I went a whole day without having a BM which hasn't happened since I was diagnosed but it came at the price of pretty severe cramping and pain. I'm not taking it as often and my very soft stools are back about 5 times a day, but I go to the bathroom to pass blood and mucous more frequently. I used to be able to handle fruits and veggies, but now I can't. These days I'm eating very minimal amounts of food because the list of what I can't tolerate seems to be growing. I'm drinking a lot of dairy free meal replacement shakes since eating is a problem. I haven't dropped weight and I'm trying not to (as much as I'd like to lose a few pounds I don't want it to come this way). Even though I was really hoping to stay on the natural route, I'll take anything at this point just to find remission again, I feel like a shell of my former self and it's causing a bit of depression with it.
Posted 10/17/2013 7:36 PM (GMT 0)
I really think you need a rectal med. I am sorry that Canasa made things worse for you - it might be worthwhile to try a mesalamine enema instead. At the least, steroid enemas should help to get you better even if you can't use them forever.
Posted 10/17/2013 7:36 PM (GMT 0)
You really need some meds to reduce your inflammation. I would try the various mesalamines first to make sure there is not one out there that will work for you. Keep in mind you need to give it time and if you are even seeing slight improvement at first that is a good sign.

I too was not able to handle hardly any foods during a flare. I could take a sip of water and be running to the bathroom. You will find when symptoms subside you can handle more food. Have you tried a low residue diet. You might want to look at the ingredients of your dairy replacement shake. There may be ingredients in there that are not agreeing with you.
Posted 10/17/2013 7:41 PM (GMT 0)
This may be a dumb question but my last doctor had mentioned an enema, I'm not sure how to take it or what to do. Let me re-phrase that, I understand how to take it, I don't understand what to do afterwards. Do you take it lying down then go to bed, does it come out after x amount of minutes? I'd like some information on what to expect with a steroid enema before I take it, my boyfriend and I live together and even though he'd be fully supportive and understanding, I'd be beyond humiliated if it came out while we were sleeping.
Posted 10/17/2013 7:49 PM (GMT 0)
You you take it in the evening and then go to bed. You may have urgency and not be able to retain at first until the inflammation decreases. I was scared of the same thing happening and wore disposable underwear the first couple nights and put plastic under my sheet. Nothing ever happened to me during the night. I did have a few times where I needed to run the the bathroom when first inserted. It is really not as bad as it sounds.
Posted 10/17/2013 7:59 PM (GMT 0)
I've heard it's easier to retain the foam ones so I might ask this new doc for that. I have a lot of issues taking medicine rectally. When I first started taking Canasa I saw a psychologist because I kept having nightmares regarding it. I'm not sure why it affects me so much psychologically but I'm going to need to work through it in order to try the enema.
Posted 10/17/2013 8:02 PM (GMT 0)
It took me a while to get used to it as well. Keep in mind you can only be on a steroid enema for a short time. You will need a maintence medicine.
Posted 10/17/2013 8:10 PM (GMT 0)
HippieKas, the oral meds are helpful, but rectal inflammation is incredibly stubborn and requires treatment with rectal meds. I'm sorry that you have issues with this and hope that you can get over it. Maybe the therapist you saw can help you develop some relaxation techniques to get you past this, or some behavior modification methods that will help you build tolerance to this medication pathway.

You are not the first one to come to this forum with this issue. You should be strongly motivated by your year-long flare to get better. Rectal meds are the answer.
Posted 10/17/2013 8:11 PM (GMT 0)
That's why I didn't take them when this last doctor recommended them. He was recommeding the steroid enemas for three months and if I found remission he said I could stay on those. I'm not a doctor but I do know that prolonged steroid use is terrible for you, I'm not sure if they are the same as Pred pills, but I was a mess on those!!!
Posted 10/17/2013 8:17 PM (GMT 0)
It's my understanding that rectal steroids do not have the same systemic side effects. Some will get absorbed into your bloodstream but not nearly as much.
Posted 10/17/2013 8:26 PM (GMT 0)
Some people do experience steroid side effects on the steroid enemas. But more than that, long term use of steroids as a topical medicine anywhere isn't good - these will thin the tissue of your rectum if you use them for too long.

Rectal mesalamine is a great choice if you can tolerate it. Your experience with the Canasa might indicate an issue, but you did alright on the oral mesalamine (assuming the Lialda didn't give you symptoms of intolerance) so I think it's worth trying mesalamine enemas.

If you cannot tolerate mesalamine then I would suggest getting the steroid enemas and also getting on some other systemic med - your choice how to proceed with that.

The upper GI problems you described earlier in this thread sound like reflux, which you can treat with OTC antacids or ppis, also follow a low acid diet and eat small meals, etc. etc. Believe it or not, proctitis can trigger reflux.

Posted 10/17/2013 8:28 PM (GMT 0)
The Canasa didn't work from the start, I saw no improvement. The Lialda got rid of the bleeding at first but I still had all my other symptoms and then eventually the bleeding returned so it was doing nothing for me, that's why I quit taking them.
Posted 10/17/2013 8:31 PM (GMT 0)
How long we're you on the Lialda before you quit taking it?
Posted 10/17/2013 8:37 PM (GMT 0)
I very recently quit taking it so around 6 months. The bleeding returned after three months and like I said, I still had the diarrhea, cramping, pain, gas, joint pain, etc while on it the whole time. I was put on Pred when my bleeding returned. I would get better but every time they tapered me it would come back worse than before. Then they kept upping it and upping it and I was very steroid dependent because when they tried to decrease me down to the inital dose I was flaring really badly. I ended up tapering myself off of it because I couldn't handle all the side effects it was giving me and the fact that I was still flaring. I was on steroids for three months before I tapered off.
Posted 10/17/2013 10:15 PM (GMT 0)
I am still wondering if a different mesalamine would be helpful. I was originally on Apriso and was switched to colazal because of possible drug reaction. At that time the doctor explained to me that people react differently to the same type of drugs. He used the example of nexium and prilosec. I believe there are others on this sie that have switched types of mesalamines with better results. It may be a good idea to use the steroid enema to get things under control and then switch to a rectal mesalamine along with oral. I don't know enough about the other options to give you advice if you feel the best option is to move on.
Posted 10/22/2013 3:08 AM (GMT 0)
I also have Ulcerative Proctitis and it's just plain ugly. My regular meds, Asacol and Canasa, wouldn't touch my most recent flare (brought on by Aleve) so my doc has me trying Uceris. Four days in and my symptoms are gone. Praying this will be what I need to get me into remission. As for food, I eat very similarly to you. Tough for a true foodie! I would talk to your doc about Uceris. Look it up for yourself...
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