Ulcerative proctitis

Hi everyone, I am a newbie hear. Actually I’ve been recently diagnosed with ulcerative proctitis after a month of continuous rectal bleeding and a colonoscopy confirmed it it a proctitis up to 15cm of the rectum is affected. I will try to be organised as much as I can in my questions, here they are:
1. Is it normal to pass so much blood and sometimes blood clots with every bowel movement?
2. The GI who performed the colonoscopy put me on a Colofoam about 3days ago, no improvement whatsoever, I wonder how long does it take for it to start working?
3. I am still waiting for the biopsy results, I am panicking it might reviel something more serious than just inflammation given all that much blood I am loosing, can they miss something like rectal cancer or confuse it with an inflammation or it is not possible?
4. If they take the biopsies to confirm the diagnosis, does it mean they are not sure of it at the first place?
5. I am getting a stinging pain in my left groin, is that because of my inflammation that has affected my lymph nodes?

I am currently putting myself in a state that I am imagining all sorts of horrible things. I am getting anxiety attacks all the time and hate the toilet trips.

Thanks so much for taking the time to read my post. Any feedback will be highly appreciated.

Hi Maggie,

Welcome to our group, and I hope you find answers. I’m sorry you are suffering and are worried—know you’re not alone. I have 22cm of proctitis, and yes, there was a lot of blood and mucus many, many times a day. I also had (and still have) abdominal cramping and a lot of anal pain. I can’t speak to your cancer fears, but know that the docs will want to rule that out ASAP.

This last flare I’m having is on month nine. It’s taken that long to sort my bowels out and find the right medication that works for me. We’re all so different in what our bodies respond to.

I understand your fears and anxiety. You may want to consider meditation or yoga as a way to calm down. I know how horrific UP can be. It is definitely not fun. However, with patience, some lifestyle changes and a good doctor, you’ll find a way to get back to your life. Most of us have.

Mari

Welcome to the forum Maggie, please take a deep breath, and try and relax a bit as your anxiety is running wild. Patience, give it a lot more time. You will be fine, everything you describe is 100% normal for a new Ulcerative Proctitis patient who's only 3-days into her treatment. Your medications are going to take 3-4 weeks to make big improvements in your symptoms.

1. "Is it normal to pass so much blood and sometimes blood clots with every bowel movement? "

While it's disconcerting to us all to see blood within stool, the amount actually present is minuscule. During a 24-hour period, we only pass between 1-teaspoon and 1-tablespoon of blood, so it is a very small amount cumulative and nothing to worry about. It always looks like a lot more blood than it actually is as water and diarrhea is mixed in with the blood making it look a lot worse than it actually is.

2. The GI who performed the colonoscopy put me on a Colofoam about 3days ago, no improvement whatsoever, I wonder how long does it take for it to start working?

Expect multiple weeks before steroids kick in.

3. I am still waiting for the biopsy results, I am panicking it might reviel something more serious than just inflammation given all that much blood I am loosing, can they miss something like rectal cancer or confuse it with an inflammation or it is not possible?

You are getting very, very carried away with what a biopsy could possibly find. You know you have UC, and they are looking to see severity of inflammation. It's a measure of how far does the inflammation extend, and how severe is that inflammation within each area sampled of UC. Standard diagnostics, a biopsy, that everyone with UC gets at every endoscopy.

You do not have colorectal cancer. Here's why, our CRC odds do not significantly increase until we've had UC for multiple decades. The two factors that influence our CRC risks are the number of years since initial diagnosis and UC -extent. With each decade of having UC, our odds of getting a CRC increase. Now on to extent, our UC with pancolitis (whole large intestine) friends have the highest risks, our proctosigmoiditis (left-side only) involvment friends have elevated risks, and our proctitis friends do not have an elevated CRC risk at all (and just follow CRC screening after 50 recommendations). Our lifetime odds of getting a CRC with UC are 3-5% (meaning 97-93% of us with UC will NOT get a CRC within our lifetimes).

You have ulcerative proctitis, and remember what I said above? Proctitis patients do NOT have elevated CRC risks at all, and follow 50+ year old CRC screenings just like the general, healthy population does.

4. If they take the biopsies to confirm the diagnosis, does it mean they are not sure of it at the first place?

No. We always have biopsies during endoscopy, it looks for severity and extent of inflammation. Gives them more insight into disease progression over time.

5. I am getting a stinging pain in my left groin, is that because of my inflammation that has affected my lymph nodes?

Could be from the biopsies, inflammation, irritation from the prep or endoscope. UC causes an immune response, so we can get a slight fever temperature, nausea, and other flu like symptoms during flares.

OMG, thank you all for being so supportive, I did not think I will get back all those replies so soon. I will try to follow your advice of not panicking so much over the biopsy results, as they are so professional and have seen it all before, so when they say it it proctitis, then probably it is.

And yes for sure I have a health anxiety that neede to be controlled and I will seek some help at some point, I always imagine the worst case scinario and that is not helping at all.

Once more thanks so much for your replies
Have a great day.

Welcome to the forum Maggie, please take a deep breath, and try and relax a bit as your anxiety is running wild. Patience, give it a lot more time. You will be fine, everything you describe is 100% normal for a new Ulcerative Proctitis patient who's only 3-days into her treatment. Your medications are going to take 3-4 weeks to make big improvements in your symptoms.

1. "Is it normal to pass so much blood and sometimes blood clots with every bowel movement? "

While it's disconcerting to us all to see blood within stool, the amount actually present is minuscule. During a 24-hour period, we only pass between 1-teaspoon and 1-tablespoon of blood, so it is a very small amount cumulative and nothing to worry about. It always looks like a lot more blood than it actually is as water and diarrhea is mixed in with the blood making it look a lot worse than it actually is.

2. The GI who performed the colonoscopy put me on a Colofoam about 3days ago, no improvement whatsoever, I wonder how long does it take for it to start working?

Expect multiple weeks before steroids kick in.

3. I am still waiting for the biopsy results, I am panicking it might reviel something more serious than just inflammation given all that much blood I am loosing, can they miss something like rectal cancer or confuse it with an inflammation or it is not possible?

You are getting very, very carried away with what a biopsy could possibly find. You know you have UC, and they are looking to see severity of inflammation. It's a measure of how far does the inflammation extend, and how severe is that inflammation within each area sampled of UC. Standard diagnostics, a biopsy, that everyone with UC gets at every endoscopy.

You do not have colorectal cancer. Here's why, our CRC odds do not significantly increase until we've had UC for multiple decades. The two factors that influence our CRC risks are the number of years since initial diagnosis and UC -extent. With each decade of having UC, our odds of getting a CRC increase. Now on to extent, our UC with pancolitis (whole large intestine) friends have the highest risks, our proctosigmoiditis (left-side only) involvment friends have elevated risks, and our proctitis friends do not have an elevated CRC risk at all (and just follow CRC screening after 50 recommendations). Our lifetime odds of getting a CRC with UC are 3-5% (meaning 97-93% of us with UC will NOT get a CRC within our lifetimes).

You have ulcerative proctitis, and remember what I said above? Proctitis patients do NOT have elevated CRC risks at all, and follow 50+ year old CRC screenings just like the general, healthy population does.

4. If they take the biopsies to confirm the diagnosis, does it mean they are not sure of it at the first place?

No. We always have biopsies during endoscopy, it looks for severity and extent of inflammation. Gives them more insight into disease progression over time.

5. I am getting a stinging pain in my left groin, is that because of my inflammation that has affected my lymph nodes?

Could be from the biopsies, inflammation, irritation from the prep or endoscope. UC causes an immune response, so we can get a slight fever temperature, nausea, and other flu like symptoms.


Thanks so much IPoop for the informative answer.