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Ulcerative Colitis
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Posted 4/30/2018 4:17 AM (GMT 0)
I was diagnosed with proctitis/uc April 2018. (32 yr old mom of 1) My doctor has made some suggestions on treatment but I'm not sure what is the best route. I went to see the Dr mainly because I was having blood and mucos in my stool for over a year. It started a few months before I gave birth to my son. I have had bad stomach pains only 2 times and it was pretty bad and I feel like it was because of terrible food choices. Other than that I frequently feel nauseated and tired(could be my super low progesterone). I have no diarrhea and I have 1-2 realitively normal bm a day. I seem to be able to keep most of the symptoms under control if I manage my diet but I'm still playing with that. So I'm just not sure if I should start the reccommended treatment of a pill 3x a day for forever and a enema every evening for 3 weeks or wait it out for a year and try to manage it naturally. I would go back for a colonoscopy and see if there's any progression. The treatment just seems like a big decision but I don't want to be stupid and put my health at risk if I don't do anything. Any suggestions are greatly appreciated.
Posted 4/30/2018 5:16 AM (GMT 0)
I would start the treatment without hesitation if it is mesalamine tabs and enemas. Unless you are sensitive or allergic to it, there are minimal side effects. Unfortunately U.C. is a chronic condition, so you don't want to leave it untreated, especially since you have been having symptoms for over a year.
BTW, nausea and fatigue are classic symptoms of active U.C.

Post Edited (C_G_K) : 4/29/2018 11:19:01 PM (GMT-6)

Posted 4/30/2018 8:53 AM (GMT 0)
good advice from C G K. Don't play around with it....it doesn't just go away; at least it certainly didn't for me.
Posted 4/30/2018 11:59 AM (GMT 0)
Begin the treatment. Whether you treat it or not, you will have this disease the rest of your life. By not treating it you risk worsening symptoms and increase your chances of colon cancer later in life. While your symptoms are light now, left untreated you could progressively worsen. Which medication were you prescribed and what are your fears?
Posted 4/30/2018 12:32 PM (GMT 0)
Ditto all of the above. Don't underestimate your UC, as that only allows your UC to spread in extent and severity. Then you have a much bigger problem to contend with!

As an ongoing treatment for ulcerative proctitis, a canasa suppository once a day is likely sufficient. For now, do as they say: oral pills and enemas.
Posted 4/30/2018 1:00 PM (GMT 0)

OP said...
I seem to be able to keep most of the symptoms under control if I manage my diet but I'm still playing with that. So I'm just not sure if I should start the reccommended treatment of a pill 3x a day for forever and a enema every evening for 3 weeks or wait it out for a year and try to manage it


Don't even think of forgoing treatment while you are still experiencing symptoms. An oral pill that is sometimes taken with an enema will hopefully put you into remission or at least prevent your mild symptoms from getting worse. These are milder meds with very few side effects. You don't want to allow your condition to get worse and later be forced into taking very expensive “big gun” meds with possible serious side effects.

As far as playing with diet, I find that a food diary can save a lot of aggravation by isolating foods that trigger symptoms. Gluten (wheat) and dairy are the usual suspects but anything can be a problem. Everyone is different and there are some, in agreement with most doctors, who swear that food doesn't matter. But there are many others who have seen with their own eyes the value of diet modification.

BTW I understand your reluctance to take meds and wanting to treat your condition naturally. There are studies indicating that those who take prednisone have a much harder time eventually getting to a med-free remission. But this may not be a problem with the mesalamines prescribed by your doctor.
Posted 4/30/2018 1:05 PM (GMT 0)
Jen your story is nearly the same as mine. Diagnosed with UC proctitis half way through my pregnancy, earlier this year.
I’ve just recently had my first appointment with my long term GI. She is wonderful, I felt the same as you. The idea of medication long term is rather upsetting when you’ve never really had more than a headache tablet your whole life.
But honestly. After doing A Lot of reading. It is by far the most sensible thing to do... at least for now:

I’m using nightly suppositories which takes less time to use than it does to take my make up off.
They give me no bother, and they are the lowest of the low in terms of meds available for UC.
I’m incredibly grateful they work well and I’ll happily use them forever. I’m awaiting a colonoscopy in June to see whether she will give me some oral meds as well. Which I will also happily take.
You want to keep that fire out for as long as possible. I’m hoping mine will stay mild. But you can’t predict anything with this disease. So I will definitely be compliant with what ever my doc recommends.

If you’ve made head way with your diet changes, why not add some low dose meds into that mix as well. It can only help.

Stay well smile X
Posted 4/30/2018 1:48 PM (GMT 0)
Welcome to the forum.

Limiting to a 3 week regimen of enemas and then off will set you up for failure. They need to be tapered and it's suggested to maintenance dosage.

I disagree with suppositories being sufficient.....i agree with them as supportive treatment while learning the symptoms of early stages of flaring and healing, etc.

experience is your teacher, and all intentions are only that because your butt rules the game.

q
Posted 4/30/2018 2:50 PM (GMT 0)
Over the short term, mesalamine medications are extremely low-risk. Over the long term, there are some risks of kidney issues but the risks are very low there as well.

At a minimum, you should take them until you are 100% free from symptoms and get a clear scope from your GI. You can make a decision from there on what you want to do. I think this is reasonable for someone who doesn't really want to take medication long-term. There are not a lot of "natural" treatments shown to be effective for UC with large, placebo controlled studies. The article below lists a few diets and supplements, and is a good starting point if you are trying to learn more about that sort of thing.

/www.dietvsdisease.org/ulcerative-colitis-diet/

There are some studies on paleo AIP, IBD-AID and SCD diets if you google them but they are very small studies.
Posted 4/30/2018 5:07 PM (GMT 0)
Wow I am so thankful for all the responses. I will begin treatment! Just as someone else mentioned its just overwhelming considering I have never had any health issues. I am so glad to find this forum. Both the tablet (3xday) and the enema 1xday - 3 weeks are mesalamine.
Posted 4/30/2018 5:47 PM (GMT 0)
All of our stories are strikingly the same, never had any health problems, never took any medications, often very healthy and young, and then *wham* UC.
Posted 5/1/2018 1:12 AM (GMT 0)
After my original diagnosis, my GI doc told me that mesalamine can take 3 weeks or so to even start working if you never have taken it before, so you may have to do the enema longer than 3 weeks. Basically it's symptom driven not time driven. You adjust meds based on symptoms. You don't taper until you have been stable for a while.
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