22 Yr Old Recently Diagnosed With Active Proctitis -- Need Suggestions

Hi everybody. After reading a ton of posts on this forum after my diagnosis, I've decided to make an account and try and get some suggestions for how to proceed with the disease.

I was diagnosed with proctitis and my only symptoms are blood and mucus. I occasionally have some bright blood with my BMs, mostly only on the paper. The mucus often comes out on its own when I'm not making a BM but also occurs occasionally with BMs. I SOMETIMES get lower abdomen cramps but I am not sure that is related.

My doctor told me that 10 cm of my rectum is inflammed and full of mucus and blood. He stated that there is a chance that the procititis will spread, stay the same, or go into remission whether or not I decide to pursue medication.

He prescribed to me three things: Rowasa enemas, Canasa Suppositories, and Cortenemas. He said he thought the gold standard would be Rowasa and Canasa, together. I am currently planning to get a prescription for Rowasa, but I cannot afford Canasa right now, as my insurance won't cover it. I will be contacting my doctor to see if there is an alternative form that is covered by my insurance (unless anyone can suggest how I can get it cheaper).

My question to everyone here is if I should pursue these enemas or if I should try and maybe eat really clean and see if that helps? I am very nervous this will become something so much worse than it is. I am very lucky to have such easy to deal with symptoms but I am terrified that it is slowly spreading and that there is nothing I can do to stop it.

Thanks so much in advance.

When were you diagnosed? I would definitely do the enemas. At the same time you can try diet change but that only works in a few people. It would probably be a mistake to not do the enemas and rely on diet change only. If you're wrong then you will be in a lot more trouble.

Yes, you should start with Rowasa. Another thing you can do to prevent further spreading is to take an oral mesalamine like Lialda or Colazal (I take the generic for colazal, balsalazide). It is really important to get this inflammation into remission and then to keep it there.

As others have said, diet may be helpful, it may not. This is something that will take a while to figure out.

Alright. So from what everyone is saying, I think I'll begin with the Rowasa enemas tomorrow for a month and then go see a GI to talk about an addition of oral meds.

Really appreciate the help. I am hoping that I can get this into remission or keep it the same, at the least!

I am roughly your age and I have had proctosigmoiditis since I was 18, it hasn't spread, but that is mostly because I have remained on my oral medications. My advice is that you ought to try a combination of suppositories, enemas, and oral medications. Believe me, it is weird and depressing, but it becomes something you learn to deal with and disregard in due time. My days used to be full of moments where I would constantly dread the medications, especially the rectal medications, but I have learned to relax to the point where taking a dose is something I must remind myself to do before bed, and something I have learned to have alongside my breakfast. It is merely a matter of practice, and you shall become comfortable with the routine in no time.

Having gone through flare ups with this disease on a constant basis, I have learned a few things along the way, since my condition is most severe in the rectum. Every flare up has its own severity and the symptoms fluctuate on a constant basis, I used to have blood without mucus, then came the mucus without the blood, then the blood with severe urgency, then the frequent urge to use the bathroom, then the bloody mucus, and it carried on. As for medication, certain drugs can help certain flare ups whereas they are ineffective against others, it has to do with the severity of the disease. My worst flare ups were worsened and uneffected by certain rectal medications, whereas those same medications helped me deal with minor flares. Do not lose faith in any drugs, their potential may be realized by you at different points in time.

The deal is as follows, diet is hard to use in order to deal with proctitis or proctosigmoiditis because of their distal nature. What helped most was an antibody test that showed an allergy to dairy. Certain foods should be avoided according to a food journal that has notes on what you ate and how you felt, please keep it as detailed as possible. The best rule of thumb is to stick away from certain stimulants such as spicy foods, processed foods, foods high in fat, alcohol, sodas, caffeine, etc.

Another thing I must stress is the need to deal with stress, since stress is virtually unavoidable, and the best method is physical activity, especially cardiovascular endurance work instead of resistance training. Also, stay hydrated and measure the amount of liquids that go into your body.

Remember, treat your inflammation and ulceration as best as you can until you attain remission, do not forget to stay on a maintenance dose when you are in remission, keep a food diary, stay hydrated, and exercise.

You may also search about different supplements that people take on here, they include but are not limited to probiotics, digestive enzymes, vitamins (mainly D3), L-Glutamine powder, and fish oils.

(If you have any questions, need advice, or want someone to talk to, contact me at [email protected])

Post Edited (Izzy13) : 1/6/2014 11:11:40 PM (GMT-7)

Saranade,
Welcome to the forum.


As a newbie to the forum, I think it's important for you to know that you have options, which your doc probably won't tell you about. So let me share with you what's worked for me in the hopes it might help you too.

Some meds work for some and not for others.
IMO, it isn't one size fits all, and you have to find what works for you, and it may be a combination of things like diet, meds, supplements, etc...

For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by taking certain proactive steps, it put me in full remission.
My steps to remission included: diet modification, various supplements, probiotics, and LDN, low lose naltrexone..

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

InSoFla, wow, I will take a look at that post when I get home! Thank you as well!!

I'm fine with the idea of enemas and suppositories right now but am a little frightened by the idea of taking them everyday for the rest of my life.

I could absolutely handle that.
Now I just have to find a pharmacy that actually has Rowasa in their warehouse.

A couple of more suggestions along the line of InSoFla's post - most people with UC benefit tremendously from adding a daily dose of probiotics (many GIs recommend and many UCers agree that VSL#3 is an excellent product). You might also consider adding psyllium (although you might want to wait until the blood is gone). Both of these should be increased slowly.

Third and fourth - add an omega-3 and vitamin D. I choose flax seed oil as my source of omega-3 and I take 2 capsules/day. As for vitamin D, most Americans are deficient in this fat-soluble vitamin, but people with IBD are especially at risk. You can ask your regular DR for a blood test to see if you are at the right level.

Saranade,

My pleasure.