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Ulcerative Colitis
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Posted 4/15/2018 3:05 PM (GMT -5)
Hi all! This is my first time posting. I am really needing some support. I have had a terrible week. I developed 3 thrombosed hemmorhoids this past week as a result of the severe rectal inflammation from my UC making me strain alot while on the toilet. The colorectal surgeon did not want to touch them due to me having UC and being slow to heal, plus the fact that I have 10-20 bms a day. So I've just been trying to ride it out and hope they get better with the hydrocortisone cream he prescribed. On top of that, I am always in intense pain due to my rectal inflammation. I have constant pressure that feel like I need to have a BM but most of the time my trips to the bathroom only produce bloody tissue/mucus. I have to wear a diaper daily due to frequent accidents where I can't make it to the bathroom in time.

I missed the entire work of work this past week and I have no idea how I'm going to go tomorrow. I can't even sit on my comfy couch for more than 5 minutes, I can't imagine sitting in my hard office chair for 8 hours!!

I am so miserable! At what point do I say "let's do surgery"? I feel like I don't know how much longer I can take this 24/7 pain. confused
Posted 4/15/2018 4:17 PM (GMT -5)
Hi and welcome. I love your username, you sound like I did when I was suffering. I had surgery, but it's really only something to consider when you've exhausted all options thoroughly, and you've got a very concrete diagnosis with an upper GI scope / MRE. You definitely want to eliminate the chance that it's crohn's before considering surgery. Your symptoms sound very inline with what I dealt with living with UC. Tenesmus, inability to get to work, running to the toilet ALL the time.

The big questions are, what medications have you tried? Any alternatives? Have you been scoped recently? What was the extent and severity? Stool tests?

If you want to read about my experience with surgery, it is in my signature. With surgery, the #1 predictor of a good result is the surgeon. You want to use one who has done 1000s of procedures. That's an important question to ask if you ever consult "how many IPAA procedures have you done".
Posted 4/15/2018 4:21 PM (GMT -5)
On the bar above left of your post--next to "Log Off" is "My Profile" which you can (should) fill out so that when you post it appears. Tell us what RX meds you are currently taking, oral RX, enemas, suppositories, etc. Tell us what you've already tried and didn't work. This way we won't waste each others time by suggesting something you've already tried.

Have you ever used mesalamine enemas (brand name Rowasa but available generic)?
They really help with rectal inflammation because oral pills just do not get that far. Suppositories also do not reach as much area as enemas. These are diff from steroid enemas which should not be used long term as they can make the skin there thin and bleed. Mesalamine enemas can be used long term or as needed.

Treating the rectal area when it's in bad shape takes care and the enema tip has to be inserted carefully. Some manufacturers are better/worse than others with the enema tip. You don't need to use the whole enema when first starting out, there's a learning curve and you'll get better each time you use them.

If you are having pain sitting there are cushions for hemmoroids.

Get some mesalamine enemas (you need an RX from your GI) and they are expensive but they could be your answer and avoid surgery.

Good luck.
Posted 4/15/2018 4:21 PM (GMT -5)
Oh no, I'm sorry to hear you're having a hard time with it. A couple of things to try for the hemmies: 1-2 super hot baths a day -- it will sting at first but I find this really helps. Get yourself some flushable wipes for post-BM wiping, then wipe with a medicated Tuck's pads and put on on the hydrocortisone cream - yes, after every BM because you're wiping it off. I was able to get mine to stop throbbing after about 3 days doing this (then took a few more days to completely reabsorb). For the tenesmus (that constant need to go) -- try an antispasmodic if you have one, and also try sitting on a heating pad (this helps the hemmies too). The warmth will help calm the muscles and feels good when you've got some pain in the area.
Posted 4/15/2018 5:24 PM (GMT -5)
Thanks everyone for the replies... I had created my signature but AFTER my post 😉

I was originally diagnosed in September 2017 after having a colonoscopy with biopsies done that confirmed UC. After that I tried Rowasa enemas which caused incredible bloating and discomfort. I tried Lialda. I have been on numerous rounds of Prednisone, which is not preferable due to the fact that I am diabetic. I have also tried Colocort enemas and most recently Uceris rectal foam. I am currently on Imuran 75 mgs and Humira 2x month pens. I also just filled a script from my GI Friday for Bentyl, antispasmodic. It hasn't seemed to help much, if at all.

I had another colonoscopy in late March due to the fact that I'm not responding to any medicines, even Prednisone. He found significant inflammation in my rectum and sigmoid colon.

Post Edited (2young4diapers) : 4/15/2018 4:54:16 PM (GMT-6)

Posted 4/16/2018 8:53 AM (GMT -5)
Maybe you could switch to a different biologic like remicade or entyvio?

Post Edited (C_G_K) : 4/16/2018 8:00:52 AM (GMT-6)

Posted 4/16/2018 9:44 AM (GMT -5)
Read my post. I am diabetic and cured. I believe there is a strong relationship to sugar. I had also taken LDN. I was at my limit when God led me to LDN. I was up to 30 times per day no control etc.
https://www.healingwell.com/community/default.aspx?f=38&p=5&m=2099301#m4002718
Posted 4/16/2018 9:45 AM (GMT -5)
I think you should have stool tests. You should definitely try other biologics before considering surgery. What dose of prednisone are you on? What dose did you start on? There is another rescue med called cyclosporine, that may be an option, but it's not a long-term solution. You would still need to find something for maintenance. Are you on a therapeutic dose of Imuran?
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