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Ulcerative Colitis
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Posted 3/30/2019 10:47 PM (GMT 0)
Hi all,
As an update, I am wearing myself to every other night salofalk enemas. I have been on every other night almost 3 weeks and I have just introduced a salofalk suppository for the nights I do not do an enema mostly for my mental state knowing o am going slow and still covering the rectum in case I go downhill.

I was on nightly enemas for 4 months or so. I had no symptoms really for at least 2 months I think.

So now, my anxiety is really trying to make me nervous about this. My goal is to get to twice weekly enemas and stay on my oral dose all as maintenance.

Here are some things I’ve been feeling. I’m having trouble separating fact from anxiety. Some of these I have been feeling while on nightly enemas too. It’s important to note that I get anxiety and panic attacks that are directly impacted by my uc. I am constantly afraid that every thing I feel will lead to a flare.

I feel itchy anus and a little swollen rectum at times. My stool had gotten firmer especially nights off enema and thicker so I think this may be the issue with the feeling of stretched out after bm.

I am having 1 bm when I wake up. I thought there may have been a streak of blood two days but not totally sure and then haven’t noticed that again.

I always seem to have some discomfort in my mid back and core area.

I wake up in the night usually around 4am just naturally as I shift and turn and then I start to get gas pains as if my colon is waking up. Eventually I pass gas and the cramps go away and I fall back asleep but this is causing me lots of anxiety. My husband thinks I have trained my body tonthia it’s waking then and then i get anxious and cause this to happen.

I can’t decide if I feel cramps, anxiety or gas or poor posture pain but I do feel discomfort in my stomach often. I get scared to eat sometimes.

Sorry this is so long. I’m hoping o can reduce the enemas, stay in remission and so if needed in future increase enemas again.

Do these things sound like I am going backwards? Or staying the same?

Thank you for the support. It really helps.
Posted 3/30/2019 11:49 PM (GMT 0)
For some it is not a straight line from flare to remission. I would stick with the enemas if I were in your shoes until cramping is gone and no more swollen rectum feeling. Have you tried consistent meditation for your anxiety? Made a world of difference for me. I have learned that a flare is coming when I start getting anxious about minor things. It is usually one of my first symptoms. I even became claustrophobic leading up to my first flare.
It sounds like you are getting there. Give yourself a break and accept what comes.
Posted 3/31/2019 12:14 AM (GMT 0)
Thanks. I think I was on the nightly enemas for about 4 months. I thought I was in the clear symptom wise and now I just don’t know.

I may go back to the nightly and see if I feel better symptom wise.
But I wonder if it’s anxiety or symptoms.
Posted 3/31/2019 1:12 AM (GMT 0)
Do you feel like maybe you have some constipation or what feels like constipation? Does it hurt or feel uncomfortable at all when you poop? Do the gas and cramps stop after you poop?

I ask these questions because I am at a point where my stools are very solid/harder, but my rectum/lower colon is still inflamed, still causing some narrowing. As a result, I feel like I do when I have constipation -- I can feel that the stool is in there wanting to pass, and after I go, my rectum does feel a little swollen/itchy/irritated, and sometimes it pisses off my hemmies and I get a streak of blood or two. Because it is taking longer for the stool to make its way through, I get some gas pains/cramps, which are typically relieved when I finally go.

You, like me, are likely not in remission. You may not have urgency, bloody d, go a gazillion times a day, but chances are you still have inflammation that hasn't gone away yet.
Posted 3/31/2019 6:34 AM (GMT 0)
Maybe it would help to do a scope (probably flexible sigmoidoscopy is enough )with biopsies. Then you would know definitively if you're in remission. Residual.discomfort could be ibs rather than inflammation.
Posted 3/31/2019 10:31 AM (GMT 0)
Yes I will be increasing my enemas to nightly again to see how I am when I do that. It is disappointing and frustrating but I am going to do it to hopefully stop this from getting worse.

Thanks
Posted 3/31/2019 4:29 PM (GMT 0)
I agree with having the doc take a look.....and while nightly might be an Ok thing to do, you really don't know what's going on in there. If all is good, then you may feel better knowing considering the anxiety about it.

q
Posted 3/31/2019 5:51 PM (GMT 0)
I’ve also just noted that I’m due for my period in about 5 days and I do get cramping and loose stools prior to period usually.

I will make an appointment for when he can get me in, I’ll call tomorrow. I’m hoping to book a full colonoscopy for July I’m due in February but maybe I can get one earlier. I don’t believe he does office scopes.

My scope feb 2018 was all clean and no active disease.

Let see how my symptoms are after going to nightly and if I feel they are better. That might be a good indicator as well.

Thanks for all the input.
Posted 4/1/2019 4:47 PM (GMT 0)
My vote is for it's all anxiety. I have nothing against scopes, but nothing you are saying warrants one.
Posted 4/1/2019 5:12 PM (GMT 0)
Sooooo, John....my GI who I love just said the same thing. And he had an opening for tomorrow but said to go get bloodwork but he does not feel with my ‘symptoms’ I need to be seen. If I wanted, he said to increase to nightly enemas but otherwise he will look at labs and let me know if there are any red flags. As well, he said to call back if things go downhill without hesitation.

So let’s see. Thanks all.
Posted 4/1/2019 6:23 PM (GMT 0)
You could call to see if a stool sample test could be done.
q
Posted 4/2/2019 3:41 AM (GMT 0)
I really despise the word (gut); however it is our second brain. Many of the same neurotransmitters are present there as they are in our brains. Often times it's hard to determine "which came first the chicken or the egg"...but more often than not when one is off it affects the other. UC manifests in our bodies in the strangest ways. Inflammation is the root of most illnesses. I wish you much healing. I'm right there with you! It rears its ugly head like "whack-a-mole" daily.
Posted 4/2/2019 12:27 PM (GMT 0)

kweeks said...
Sooooo, John....my GI who I love just said the same thing. And he had an opening for tomorrow but said to go get bloodwork but he does not feel with my ‘symptoms’ I need to be seen. If I wanted, he said to increase to nightly enemas but otherwise he will look at labs and let me know if there are any red flags. As well, he said to call back if things go downhill without hesitation.

So let’s see. Thanks all.

I'd agree. And I get the anxiety bit, it's the real devil of this awful disease. I had a flex-sig a couple months ago, convinced I had lingering inflammation (see blood off and on, a couple times a week), and was confirmed in an endoscopic remission instead (happy I'm in a remission but puzzled on the random blood; chalk it up to hemi's I guess *shrug*). It's a crazy disease, both in physical symptoms and in emotional collateral-damage. We can convince ourselves we have something going on, all for naught.
Posted 4/2/2019 6:10 PM (GMT 0)
Thanks all. Yes the head trip that uc does to us all is almost worse than the disease itself.

Having this forum to go to and get opinions and hear others stories definitely helps.

Today, bm was normal for doing an enema at night. And I do feel intense period cramps so I know that is on the horizon which never bodes well for digestive systems.

I am doing nightly enemas again however and will see how I feel in a couple weeks and try to taper.

Who has successfully tapered down mesalamine enemas to everyother day or 2 times a week?
Posted 4/3/2019 3:27 AM (GMT 0)
I suggest tapering after this period...if you wait a few weeks, it will be the same timing as like now.

q
Posted 4/3/2019 3:29 PM (GMT 0)
Yes agree Quincy. The thing is that my period length is unpredictable lately. So maybe tapers off at day 6 but not over for a few more days or longer!
I think I will taper enemas at day 7 though bc I agree that this whole cycle will just restart if I wait.

Thanks!
Posted 4/3/2019 4:39 PM (GMT 0)
Keep us updated.
q
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