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Posted 8/17/2015 10:11 PM (GMT 0)
Hello fellow patients!
I'm 28 and I was diagnosed with UC recently and I got one thing to say: IT SUCKS yeah

Any advice and mostly,some love would be great!
Here's my story,(generally I was a really healthy person)

In Feb 2015 my first real flare started,8-15 daily visits to the WC,blood,diarrhea,gases,the whole package!
I continued to ignore the problem for 5 months(young and stupid,you know how it goes),until I finally went to the doctor on mid july,I got examined,biopsy results got back and here I am now with UC (40cm),trying to figure out how to handle it.

The doctor gave me mezavant 1.2(2 pills morning-2 pills night) for 20 days and 1 salofalk enema 4g before sleep for 14 days.,everything was going GREAT after so many months of suffering,Solid stuff was coming out,1-2 visits to the WC maximum,no blood.I really thought I was done with this nasty thing!Not a chance..
After 14 days on the meds suddenly all hell broke loose!
The symptoms came back,diarrhea,some blood,and this time also lower back pain.

I went back to the doctor and got new meds.
Now I'm on 2 Salofalk granu-stix 1000mg in the morning and 2 in the night,1 salofalk enema before sleep,plus some antibiotics.I'm still on a flare with blood and diarrhea and a mental wreck!

That's it for now
rolleyes rolleyes

Thanks for "listening",it means the world to me!
Posted 8/17/2015 10:20 PM (GMT 0)
I send you lots of love from Poland and my full support :)
Posted 8/17/2015 10:43 PM (GMT 0)
Yeah, uc sucks. Your story is similar to most of us, young, healthy no issues until bam uc. I delayed diagnosis, and many do (the prospect of a colonoscopy isn't anything that anyone rushed to). Most of the treatment of uc is a trial-and-error process. It takes a while to find the right medications and dosages for you. It's frustrating, that it's not a simple solution, but unfortunately, that's the way it is.

Salkfolk enema plus oral sounds like a good treatment plan to start. If you don't show a response in a few weeks then you'll likely need a stronger medication (imuran/aza/6mp). Keep in touch with your gastroenterologist and make sure he/she knows about your progress or lack thereof.

Did you have your stool tested for cdiff?
Posted 8/17/2015 10:45 PM (GMT 0)
Yuck it stinks a whole lot to get UC.
Is it possible you have a c. Diff infection?
A stool test can usually detect it.
Some of the symptoms of c. Diff can be but are not limited to
Fever, abdominal bloating, explosive gas or diearrea
Loose stools, yellow, extremely foul smelling, stingy, mucousy...
Because you were doing better and than bam it got worse it causes me to suspect c. Diff it's not fun but it's usually treatable with antibiotics like vankomaycin.
I know it's really hard to get diagnosed also family and friends don't get it and can make things stressful
Know that all of us don't judge because we are in a similar boat and can relate to what others are going through
Posted 8/17/2015 10:46 PM (GMT 0)
Welcome to the club. Sorry you are also dealing with this wretched disease. Please make sure you get tested for bacterial infections. They are common among uc'ers and make us much worse.
Sounds like you are on the right track medication wise, but remember to be your strongest advocate if things aren't getting better.
Posted 8/17/2015 10:55 PM (GMT 0)
THANK YOU EVERYBODY!!

I don't know what c.diff is exactly,I haven't done any tests,but the doctor gave me 2 different antibiotics per day for 10 days.

I know I sound like a newbie,but I have a stressful job for another 45 days,working long hours,and dealing with UC at the same time is really difficult.
Anyhow,I'm doing lots of research on diet,probiotics,etc, and I promise I will try to BEAT this thing(well,at least control the flare hehehe)
Posted 8/17/2015 11:06 PM (GMT 0)
John,

I feel your pain!! Your story is very similar to mine, i ignored it and was diagnosed in my early 30's.

Hang in there, this forum is amazing and when I'm feeling lost with my UC i come straight to my forum buddies, you will learn much more on here from others experiences. I myself have struggled to stay in remission longer than 4mnths. I just lost my job due to my UC, i just was at a low and my work performance struggled.

It is the DEVIL so i won't sugar coat it, it is a ride that you never expected and it will change the way you view the world for better or worse.


Good luck!!
Posted 8/17/2015 11:16 PM (GMT 0)
C. Diff is short for clostridium difficile. It's a bacteria that is in many people's colon in very small numbers. Various things can cause it to become pathogenic and reproduce rapidly causing an infection.
People with ibd are very prone to c. Diff
A main cause of it is antibiotic use... Many of the bacteria in our gut get killed out but the c diff spores may not have been killed out and it reproduces rapidly. Ironically a broad spectrum antibiotic can get the infection under control. Often doctors will start with flagyl and then move onto vankomaycin if the flagyl doesn't work ( very common)
And lastly they can try dificid.
Another treatment option that sounds gross but actually had an astonishing success rate is fmt or fecal microbiota transplant
It's basically taking a healthy persons poop and transplanting it to your colon
Posted 8/18/2015 12:06 AM (GMT 0)
Sorry you have to be here john6543! Welcome though, always sad when another new member shows up, they really need to get IBD cured already!
Posted 8/18/2015 1:35 AM (GMT 0)
Weelcome! Having to come here is the craps, but the people are great yeah
Posted 8/18/2015 4:01 AM (GMT 0)
Hi and Welcome! So sorry you're struggling with this awful illness. I was diagnosed around your age as well. It's really a bummer. I hope you heal and that it is easy to treat so you can live your life without worry of pooping your pants. Please let us know how you do, and yes, get stool tests!
Posted 8/18/2015 3:10 PM (GMT 0)
I was diagnosed at 22 and yep, it's definitely a long and painful ride for some!

This forum has been incredible to me over the years and has helped in ways I didn't think was possible. I was in the dark for a long time before I found HW. So welcome! I'm sorry you had to find us under such circumstances but ask any question or concerns you have anytime and any day.
Posted 8/18/2015 7:52 PM (GMT 0)
Thank you very much for the support people!

It's day #4 on antibiotics and salofalk enemas and granu-stix and things are a little better.
Still not having solid stool(probably from c.diff.waiting for the antibiotics to kick in ),and some blood when going to the WC.
The good thing is that the visits to the WC have been limited to 3-5,which means I don't have to run like crazy to the closest toilet smilewinkgrin

Side effects are: feeling tired all day(not getting enough nutrition probably),and a sense of "wanting-to-vomit" at times,and mild headache sometimes.

I still have 6 days of antibiotics,hopefuly stool will get solid tongue
Posted 8/18/2015 7:59 PM (GMT 0)
Chamomile tea can help with the nausea but you can also ask your doc for some zofran or reglin they are prescription drugs that help cut the nausea
Also, c diff makes spores that regular cleaning will not kill
Make sure to wash hands with soap and water and clean hard bathroom surfaces with bleach
Purell will not kill the spores
You do not want to reinfect yourself.
What antibiotics did they give you to treat the c. Diff?
Posted 8/18/2015 8:36 PM (GMT 0)
I haven't been tested for c.diff yet.Doctor gave me 2 different general antibiotics for 10 days,ciprofloxacin and metronidazole,plus the salofalk treatment.

nausea was the word i was looking for ;)
Posted 8/18/2015 8:57 PM (GMT 0)
some doctors just throw antibiotics at you because they aren't sure what to do. if you haven't had a c diff stool test, then the antibiotics might not be needed at all and could possibly make you worse.

please make sure you are taking probiotics and eating yogurt/drinking kefir. if you dont have c diff right now, the antibiotics could give you c diff if you don't replace the good bacteria. this is why it's so important to only take antibiotics when there is a positive infection for sure.
Posted 8/18/2015 9:09 PM (GMT 0)
I second banana that if there is no infection do not take antibiotics
Flagyl can actually cause c. Diff even though it's one of the drugs used to treat it
Ask your doctor why he antibiotics were prescribed.
Also ask for a stool test to rule out c. Diff or some other pathogen
Posted 8/20/2015 2:47 PM (GMT 0)
If your doctor did not test for C-Diff, I would consider another doctor. You may find that they already tested you, but did not tell you about it. My only advice to you as a fellow new UC'er is try your best not to spend too much time on this forum. It is full of great and helpful people, but lurking here too long is not good for the brain...too many horror stories. A majority of people with UC live relatively normal and happy lives. Also, good luck with the diet modifications, I went with the Specific Carbohydrate Diet and it has given me a real energy boost and has helped my overall outlook on the disease...although I am still skeptical on its effectiveness overall for UC.
Posted 8/20/2015 3:49 PM (GMT 0)
Welcome but sorry you have to be a part of this club. A real blow to how you thought your young life would be. Hopefully you will find a good combo to keep u in remission. It is good you are on the rectal meds...not glamorous but very helpful for a lot of us. Keep us posted...this is a great community!
B
Posted 8/20/2015 5:44 PM (GMT 0)
Sending you lots of love. I was diagnosed April 2015 and yes...this sucks. Presently taking Flagyl 500 mg x 3, Cipro 500 mg x 3, Bentyl 10 mg x 4 and Pentasa 500 mg x 4. This is a great community, and I am appreciative of all the support I have seen here. I hope its gets better for you soon. Keep us updated. Question: Can anyone tell me when the bloating and abdominal cramps stops? Thanks!
Posted 8/20/2015 6:23 PM (GMT 0)
Welcome and sorry you are going through this!
Posted 8/20/2015 6:52 PM (GMT 0)

tigres487 said...
Question: Can anyone tell me when the bloating and abdominal cramps stops? Thanks!

Once your uc is healed it'll go away. Bloating and cramping are both signs of a uc flare up. Make sure you're in contact with your gastroenterologist about those symptoms, they're being proactively treated, and keep your doctor posted about your progress or lack thereof. Good luck.
Posted 8/25/2015 8:25 PM (GMT 0)
Thank you iPoop.
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