"Very Mild" Ulcerative Proctitis and now I have anxiety :(

Hey everyone,

I'm a 22 year old college senior that was diagnosed with a "very mild" case of Ulcerative Proctitis in early November of 2015. I had blood in my stool since Jan/Feb 2014 where I would bleed for weeks, have 2 weeks with no blood, and then the blood in the stool would come back. What really concerned me was how the blood would appear clotted sometimes and then became accompanied by mucus. Finally, after a year and a half I saw a doctor for it. Had a colonoscopy done with biopsies. My biopsies came back "normal" and my gastro doctor said the inflammation was limited to the last 4cm of my rectum (If I remember correctly).

Anywho, my only symptom for the past 2 years has only been blood and mucus in the stool.
I'm on Canasa 1x/nightly and oral delayed release mesalamine (400mg 4x/day).

The Canasa has helped a lot but I still don't think I'm completely in remission. I've been on Canasa for the past 2 months and I'll go several days with normal bm's but occasionally I'll see a small amount of blood, sometimes clotted, once every 7-14 days. The mucus is totally gone. I know proctitis is extremely stubborn and the occasional blood is a whole lot more minimal than it used to be, after I pass that proctitis BM I go back to having normal bm's so it's like this one and done thing for the next several days.

PLOT TWIST: Before my colonoscopy, my initial GP told me there was a small possibility that the 18 months of bleeding could be cancer. I had to wait 3 weeks for a diagnosis and during this time I worried excessively about cancer. After my diagnosis, I still was anxious and scared. Now I suffer from some pretty bad health anxiety. My anxiety has gotten so persistent and bad that I'm experiencing physical anxiety symptoms which furthers the fear.

One of my anxiety triggers seems to be UP. Every time I notice a small amount of blood in my stool, despite knowing that I'll got the next 1-2 weeks fine, I get really scared and start thinking about UP worst case scenarios and that leads me to experience more anxiety/stress. This is a horrible cycle to be in because it's known that stress is a contributing factor for flares and anxiety is a contributing factor for gastro issues in general.

It's so hard to stay calm and not worry about my UP especially when I get these random bm's with blood in it.
It makes me so anxious and depressed. I was diagnosed with "adjustment disorder with anxiety" so, according to my therapist, this anxiety should clear in 3 - 6 months but its so hard with UP. I'll feel my anxiety going away and then the bloody bm will strike and I find myself back in the anxiety fear cycle where I google excessively and start worrying about the future.

My quality of life has also been effected as a result of this. I'm scared to go out to bars and drink, i'm overly cautious about groceries, and moreso I feel like I'm losing some of the best years of my life. The good ol' last year of college. My final year in my home away from home.

I just don't know how to cope. I know my proctitis is super mild and am grateful that the only symptom I've had the past 2 years is blood but I'm also terrified of the future with this.

I've read so many proctitis horror stories.

I guess I wrote this for answers but I'm not even sure what my question is. I guess I just want some positive insight?

Also that cancer scare didnt help! ;/(

Its very disturbing and can really affect you mentally, IF U LET IT!

I shouted at you! :/)

Really you got this! Its a freaking bummer but you are so lucky!

I read once and always TRY to remember that 99% of the things we worry about dont happen.

Go finish school strong! Have a few drinks, be smart about it though!

You got this!

Your therapist nailed it!!

Go be happy!

Really. ;-)

This is going to sound strange, but you might want to stay away from this board for a while. Those of us who are here tend to be the worst of the worst; when people get better they tend to drop off the board because they don't need it any more. Staying away from websites that stress the negative about your condition can help a lot with your anxiety. We have a saying around here: "Avoid Dr. Google."

UC and anxiety are like a puppy chasing its tail. Anxiety only tends to increase the UC symptoms. Go, live your life and put those worries on a shelf for a while.

I'd suggest you increase the Asacol and split it to a twice a day dosage. 3 asacol twice daily. That'll take your mind off of taking it 4x daily. Talk to your doctor about that.

Ask the doctor for mesalamine retention enemas of 4g strength.

Regarding your anxiety...it's a natural thing for people to be worried. It seems you don't have a lot of experience dealing with flares, the meds, etc.
Once you've got a bit more under your belt (so to say), you'll have a better understanding.

I disagree for you to leave the forum....the more information you have the better. Do more research and ask questions.

The reason those of us who aren't flaring stick around is because we want to....not being here doesn't mean living life.

q

I would also stay away from the boards and IBD stuff on the net as a whole. If the net had existed when I was first diagnosed with proctitis I think I would have limited my life unnecessarily. The fact you went with it for a long time and it didn't progress to UC sounds like your body copes well to keep it at bay. You know to see a GI quickly should things get worse but there's no reason to think that they will.

It's safe to experiment, if you do bleed consistently after drinking then cut it out, if you don't, no problem (in moderation of course, as we would say to anyone, regardless of current health). If alcohol does aggravate you then still go out but find ways to replace the alcohol with soft drinks.

You mention that you are in therapy, not sure what sort but this is a good self help package for health anxiety if you want something focused to work on http://www.cci.health.wa.gov.au/resources/infopax.cfm?Info_id=53

Good luck and be well.

London Lurker,

Thanks for the reassurance and that awesome self-help packet. Right now I'm seeing a therapist that specializes in anxiety and cognitive behavioral therapy. Health anxiety is tricky because anxiety gives you weird physical symptoms after you spend weeks on edge an those symptoms further fuel the health anxiety. I've seen 10+ doctors in the past 2 months all agree that I'm fine but anxiety is hard to silence even with reassurance. Definitely going to take a look at that packet.

Also, I don't think alcohol aggravates my UP too much. In the 1.5 years where I was experiencing symptoms but was undiagnosed, I drank normally and didn't really notice a dramatic change. Even after diagnosis and now that I'm going days without blood, I've had drinks and still don't notice blood that correlates with my drinking. Regardless, because now I'm more cautious about my health, I've decided to cut back on drinking to only on social occasions where I feel like I need to go out and enjoy being in college.

Health anxiety has its benefits. I've learned frequent alcohol consumption increases a person's risk for all types of cancer by 6 times. It's pretty crazy. Also, I'm getting back into the gym (I haven't been in 5 weeks because the anxiety knocked me off my rocker but I used to go 5x's a week). When I workout I hate drinking because it ruins 2 hours of gym time.

I'm going to avoid the Internet and health forums for a while. Thanks so much!

Hi , pretty new to forum and found this post I too have been diagnosed with proctitis and suffer with horrendous health anxiety ( this has been lifelong not due to this )

First got symptoms last Feb after quitting smoking - went to the doctors a total of 14 times ( was fobbed off with fissure and piles or it was all in my head until referred for piles banding and turned out I had distal proctitis , they took biopsies told me I would get a letter in a week -(still not had this letter) that was November - they then have put me on 1g pentasa suppositories per night - had a specialist appointment Feb 18 -specialist was busy so saw the registrar - biopsies inconclusive but 100 percent either crohns or ulcerative colitis and also added I had brought this on my self by quitting smoking - subscribed me Octasa 2.4 a day ( not made any difference except more bleeding therapist has now signed me off as I am no longer depressed and health anxiety is just part of who I am


Anyway my main question is my main symptom is just feeling like I need to go at least every hour but nothing but thick yellow mucus with sometimes a hint of blood ( mainly just the mucus - is this a normal symptom as I can not find anything on these forums with just this every day for the last year this is happening and it's so unconfortable holding it in all the time - I do sometimes have 3-6? per day the norm is usually three sometimes formed sometimes not - but this doesn't bother me it's just the mucus as it's worrying me as no one else seems to just have these symptoms ?

Thanks in advance any advice would be appreciated ( again I'm sorry I know I shouldn't be marding about my mild symptoms just highly anxious

Oh thanks I was just worried as that doesn't really get mentioned that much and when I mentioned to the registrar he said "could be something to do with it " sorry octasa is oral which I take 3 times a day not been on long but doesn't seem to be making a difference other than more blood than usual - not a major amount - the registrar said they will see me again in 4 months but I don't know if i should pester to go back and maybe ask for enemas or something as the Pentasa worked for like 3 days I had Hardly any mucus and now it's not making any difference
Thanks again

I think it was most people were saying it was with the bms but mine is just on its own and maybe I wasn't looking at the correct threads - thanks for your advice