HealingWell
Search Close Search
☰

Struggling

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/29/2016 3:30 PM (GMT 0)
Hi everyone, I come here today just needing a place to vent. I am miserable. This current flare has lasted four months and it seems despite whatever measures are taken to make it better, it just keeps getting worse. I was on a high dosage of Prednisone for a while but began weening off of that when we decided to begin humira. It's been 11 days since I started humira and I just finished taking Prednisone 4 days ago. All of my original symptoms are back from before I began the Prednisone, it seems as though it simply masked the problem and now it is back in full force. I haven't slept in months and over the last two nights I think I got a combined 7-8 hours of sleep of course with a max of 2 hours at a time. The sleepless nights have caught up to me and I am just exhausted all the time. I don't have any energy to do more than I have to, even getting to work is a battle. I hope the humira eventually does the trick, but I know that can take weeks or even months in some people, or not work at all. I'm struggling and fed up with this disease and really just want my normal life back. I've tried to stay positive, and I've gotten a lot of good feedback from others on this site that I've tried but just no luck. Well thanks for listening to my rant. I hope you all are doing better than i!
Posted 9/29/2016 3:57 PM (GMT 0)
I ditto what you said....but I'm flaring for 3 years.
I was instantly better after my first Humira dose...then after the 2nd dose my bm's increased to 4 times/day but formed. Then last Friday....full blown flare. I have my 3rd dose today. My GI may give me an extra 1 next week if I don't get better.

But I get it. Bowel disease really, really sucks. I'm at the end of my rope as most ppl here know
Posted 9/29/2016 5:32 PM (GMT 0)
Maybe you should have been on the Pred a bit longer, I'm not sure really, but I do think it is unfortunate that you seem to be back to square one, that can't be easy for you, and so I think you need to speak with your GI and get in to see him asap to discuss your situation.
Posted 9/29/2016 5:34 PM (GMT 0)
Uc truly and thoroughly sucks. For best results you should be on humira + an immunomodulator (6mp ot Imuran) + prednisone until you get a response from humira. Afterwards, reduce the prednisone.
Posted 9/29/2016 6:11 PM (GMT 0)
11 days is not enough for Humira. For some it takes several loading doses.

I hope it kicks in
Posted 9/29/2016 8:12 PM (GMT 0)
I'm at day 12 and just maybe starting to see some minor improvement, but it's not a trend, it's the usual UC roller coaster.
Posted 9/29/2016 8:16 PM (GMT 0)
Yeah, I didn't really notice any real difference until after the 2nd round of loading doses. Until then, I was getting through my work day living from Imodium dose to Imodium dose.

Hope it kicks in soon!
Posted 9/29/2016 8:24 PM (GMT 0)
So sorry to hear about this. I know exactly how you're feeling. If it's not the cramping and urgencies, it's the pure exhaustion. If it's not the exhaustion, it's the medications not working. It never seems to end at times. Just know that you still have a lot of tools in the tool box -- there's remicade and other medicines that can help if humira doesn't do the trick. I know it's tiring, but keep fighting this disease. You got this :)
Posted 9/29/2016 9:28 PM (GMT 0)
I just wanted to tell you I love you even if it feels and
looks like no one else does.

I found a phrase come to me that can help the torture
in the mind.

no thoughts = no stress

So try to think of nothing, and only listen to nice
happy, peaceful music sometimes. Otherwise just
listen to the sound of your breath. once you let
thoughts into your mind they spread like cancer
and torture you and continue building the stress
and madness.

Tell yourself
"I love you, I am so sorry"

Research and try LDN
Research and try FMT fecal transplant even if you have to go to argentina
or australia to get one and can afford 10k plus travel.
Posted 9/29/2016 9:39 PM (GMT 0)
I can relate. I've had flare ups that lasted well over a year and wouldn't subside. Eventually I had surgery because I couldn't take it anymore. I think you're going to have to be patient. In reality, 3 months isn't that long, and if your course of pred was over a short period, maybe it was too fast? Have you had stool tests to check for pathogens? Are you using rectals? It gets really tiring fighting, especially when it goes on for months or years, the only way I was able to get sleep was to eat extremely light. The more I ate, the more I was on the toilet. Nothing to do with what i ate, only the quantity. You will get this under control. Even if Humira isn't magic for you, you have tons of options - but you need to give the Humira time. You also should use rectals and continue your other maintenance meds. Get stool tested. Some people have luck with various diets or probiotics, it's worth a try...
Posted 10/1/2016 12:09 AM (GMT 0)
Thank you all for the responses, your words go a long way so thank you. I have had a stool sample taken for c diff, but the results came back negative. Luckily I was abl3 to get an appointment with my doc next Monday, the same day as my second round of doses for humira. IPoop, what is Imuran (sp)? Is it more pills? And also, I see some of you said your flares lasted years... Wow! I would not be able to make it at this pace if it lasted a whole year! I saw one of you decided to do surgery... I know that is a last resort but I like knowing all potential possibilities. What were the steps taken before you decided that was the only option?
Posted 10/1/2016 12:26 AM (GMT 0)
Ulcerative colitis is treated with three classes of medications: first class is anti-inflammatory mesalamine (lialda, asacol, apriso), second class is immunomodulators (Imuran or 6mp), and third class is biologics (remicade, humira, etc).

Yeah, Imuran is a pill that slightly suppresses your immune system.
Posted 10/2/2016 11:23 AM (GMT 0)
I'm sorry! My very first flare I was on here writing similar thoughts. I got bettering, but never had full remission until I went in Imuran.

If I've learned one thing watching these boards it's everybody seems to need to find what works for them and for everyone it's different.

I remember laying in bed crying g and thinking my family would be better off without me. 3 years later I still have my awesome job and family,and even though this current round of Prednisone is making me a bit cray-cray it's a far cry from those days.

You'll make it over the hump!!!
✚ New Topic ✚ Reply