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Feel like I am losing my mind- UC related

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Posted 1/4/2012 11:36 AM (GMT 0)
I've had UC since I was 20 years old (I am 33 now) and I've had my bouts of remission, but this is the longest flare I've been in since I was 20 years old. All I have is pain in the transverse colon, and tons of mucous that comes out when I pass gas. Talk about needing a lot of underwear! :) I am just tired of this. I called in sick from work once again because of this issue. I usually get up early (5:15am) to get ready for work and to give myself time to have bm, etc. All I've been having lately is mucous and pain. I am tired of this. I started Humira a few weeks ago and have not felt any improvement. This is getting me depressed and I feel I cannot be the whole 100 percent teacher that my 6th graders deserve. I try to put on a facade and go along with what i have to teach, but some days I just cannot handle it like today. So what can I do? Any suggestions? I wish there was something I could take to help the pain and mucous while I change my diet. Btw, my doctor prescribed klonopin for my anxiety and can that made the uc worse? I am also finishing up some antibotics (z-pack) for a sinus infection. I just can't take this anymore....

Heather
Posted 1/4/2012 12:25 PM (GMT 0)
Sounds stupid but when I have this mucus-gas problem, I use the long pads like I would as if I was on my period. Helps not to waste that much underwear during the day.
Posted 1/4/2012 2:07 PM (GMT 0)
iluvsunflowers15,

Heather, I'm sorry you're feeling so crappy (no pun intended).

UC is a tough disease to deal with, no question about that.

And one you have to be proactive about and in charge of, I know that sounds very hard to do, so you have to break it up in a few pieces and work on each one at a time.

- if the drugs aren't totally helping, you need IMO to find adjunct things that will help you, i.e. L-Glutamine powder for the D, slippery elm powder to coat the whole tract, probiotics - espcecially that you are now on antibiotics (you'll need to at the very least double your intake of probiotics)

- diet - start a food journal and write everything down and the resultant effects. if you can try dairy, wheat, gluten free and you'll find IMO quite an improvement.

- have you considered giving LDN - low dose naltrexone - a try?

many on this forum have been greatly helped by it:

Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works! Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

 

You can do LDN while on biologics, and when it starts to help, many are able to wean off them entirely.

 

I hope you start to feel better soon. Sending you a big hug.


 

Posted 1/4/2012 2:11 PM (GMT 0)
Don't approach changing your diet as something monumental, take it one small step at a time, while keeping notes. Start with going dairy-free and perhaps wheat-free for one week (no alcohol either). For me dairy is the cause of gas, you need to see if that's true for you too.

Earlier you said you only do the enemas 1x a week, that's not enough. Used at night they actually help you in the morning, not slow things down, so I'm not understanding why you can't use them every night.

It is very hard to sort out what things (food, drinks) are causing what symptoms but it's faster to start with the common foods known to cause problems: dairy, wheat, fruit, juices and other sugars (again = gas for me).

Take a weekend and plan out what you can take to school and eat for lunch that is dairy-free and wheat-free. Egg-salad or chicken-salad in a container. LaraBar. Drink lots of water at times you have access to the restroom, water helps heal.

Start with baby steps and look for any improvement that will give you courage to go forward. If you have no improvement with diet modification then admit that too so you can move in a different direction, perhaps surgery.

Best wishes.
Posted 1/4/2012 2:12 PM (GMT 0)
Antibiotics can make your gut issues much worse!! Even without UC folks get gut issues when on them!!
Take some immodium?? My GI says its safe for a few days to see if it helps.
Call your HR people at work and ask about some LOA hours or short term disability until you can get better.
I finally did that this year and have been so grateful for the time to heal.
Call your stinkin' doctor (GI) and tell them what is going on. At least leave a message through your advice nurse!!
Tell him to do his/her job, and what you PAY them for, and help you figure out what will make this better. If they don't know, then tell them to refer you to
another MD.
Are you taking supplements?
Are you eating LOW FIBER foods?? Or do you take the Metamucil route??
RICE girl, eat RICE and bananas if you can tolerate them, I can't.
WATER, and Gatorade if you can tolerate that. It has electrolytes in it, but not tons of it as it has a lot of sugar too.
Rest, rest, rest.
Good luck,
Mary
Posted 1/5/2012 8:59 PM (GMT 0)
Sorry you are getting so worn out.
My doc says she observes, as do her GI colleagues in big towns, that Remicade works better than Humira for UC. Just weighing in on that.
Posted 1/5/2012 9:15 PM (GMT 0)
OMG it is aweful when it is like that the no control the unwanted accidents the UTI's that go with it, the others are right try some diet changes they may work, 6th graders would be difficult to treat with these symptoms. Am praying for you, have you tried going to a naturopath it worked for me, and alot of others I have also read of accupunture that has been successful

cheers mum of 3
Posted 1/7/2012 9:20 AM (GMT 0)
I have been reading your posts for the last few weeks and they have been great reassurance to me, I was diagnosed in Oct last year and have had active flare since, I am currently 30 weeks pregnant and was initially treated with prednisone foam, GI doc, my Obstetrician and family doc between them do not want to take accountability because I'm pregnant the predfoam worked for 2 weeks but now it has stopped working and doctors do not want to give me anything stronger. I live in Ireland and feel UC is taken more seriously in the States. I am exhausted in pain and really fed up I'm worried also that in labour what sorts of issues I will have as even when I pass urine now I also have to pass alot of blood and clots mixed with small amount of diaherrea without even bearing down so the thoughts of all the bearing down associated with labour upsets me (I have had 2 other children naturally so it's not labour that scares me) just what I am going to expel. Anyone had any experience of this in labour?
Posted 1/8/2012 5:04 AM (GMT 0)
Sorry to hear you're having such a hard time. I really admire all of you who have normal lives and work. I've been home bound for the past month.

With regards to your sinus infection, the last time I had one my ENT suggested I have the antibiotic injected rather than take it orally, so it would bypass my GI tract. Just an FYI for the next time.

I'm sure I caused my current flare because I had minor elective surgery. 3 weeks of antibiotics and pain meds brought it on. I'll never take antibiotics again.
Posted 1/8/2012 7:19 AM (GMT 0)

yeah  nicrob08 said...
I have been reading your posts for the last few weeks and they have been great reassurance to me, I was diagnosed in Oct last year and have had active flare since, I am currently 30 weeks pregnant and was initially treated with prednisone foam, GI doc, my Obstetrician and family doc between them do not want to take accountability because I'm pregnant the predfoam worked for 2 weeks but now it has stopped working and doctors do not want to give me anything stronger. I live in Ireland and feel UC is taken more seriously in the States. I am exhausted in pain and really fed up I'm worried also that in labour what sorts of issues I will have as even when I pass urine now I also have to pass alot of blood and clots mixed with small amount of diaherrea without even bearing down so the thoughts of all the bearing down associated with labour upsets me (I have had 2 other children naturally so it's not labour that scares me) just what I am going to expel. Anyone had any experience of this in labour?

hi nicrob08,

I live in Ireland too and they are constantly saying not to go on the american sites because they will scare us!!!  what a load of crap!!! (npi)  If anything it easier getting proper advise here than to get thru to my GI. 

sorry to hear you are having a bad time but if you want good advise you should start a thread of your own cuz no1 every1 will see (iykwim).  Every1 here is very helpfull.  lots of females too that im sure have been through pregnancies.  i have 2 kids but b4 i got sick.  dx'd this year in summer.   

sorry for jumping in on your post luvsunflowers.

Posted 1/8/2012 9:31 AM (GMT 0)
I kind of wish someone had scared me, because I ignored things for a long time. I t was easy because my symptoms weren't that bad for the first four years. But that would have been the time for me to really try diet changes and stick to my meds better to see what really works. I was told food didn't matter, never looked anything up except to read that only 20% of people with proctitis get worse, so I figured that would not be me. Those numbers are probably wrong anyway. I don't know if things would have been different in the progression, but docs don't realize young people don't feel like they should be sick, or take meds, and moms with young kids ignore their own problems. After your labor you may not be that bad, so don't psych yourself out, but do research about treatments so you go prepared to your doc to ask questions, and be patient about giving things enough time to work.
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