I was diagnosed with UC a year ago (started bleeding on my 22nd birthday...lots of fun). Since my diagnoses my doctor had done a pretty good job of keeping my symptoms in check for the majority of the year. About a month ago I feel like I really started to go down hill fast, I started getting these cramps where I could barely move, the pain was awful but as soon as I went to the bathroom the cramps would ease up. Of course, bleeding started to increase dramatically as well. My doctor prescribed me another round of prednisone to keep the symptoms at bay and started working with my insurance to get me on the biologic Humira. I went home and two days later ended up being admitted to the hospital, I had lost so much blood that I became anemic, I stopped wanting to eat because it hurt so bad, and I had lost 23 pounds in the prior two weeks.
I stayed in the hospital for four days, they gave me a iron transfusion, and ran tons of tests trying to figure out what was going on. Tests results came back positive for C diff. I was instantly taken off the prednisone and started on a 14 days of vancomycin.
I'm on the last day of vanco and I have not really seen dramatic results. I know antibiotics can cause havoc with UC symptoms...has anyone else had a situation similar? If so did you start feeling better once the antibiotic had ended? and for those that are on the biologic Humira, how long did it take for the medication to really kick in?
My doctor seems to think what I will be back to normal by the 30th, he even wrote me a letter for my employer saying that I would be able to go back to work with no restrictions... but I am horribly scared that its unrealistic.
I'm kinda reaching my limit.. this disease really sucks...especially with C diff!
Reply posted for nanalyly.
Instead of coming here to ask everyone to find the best answer, you should go to the hospital to get the best advice from a specialist doctor. That will definitely be strands nyt very helpful for you and I think that is the best thing for you at this time.
Reply posted for mysticmochi.
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Reply posted for kristendwyer.
Have you experienced any side effects from the Humira? The stuff on the commercial sounds too risky.
Reply posted for mysticmochi.
I have found that antifungals make me feel better, but research shows that no matter what we do, we will get a flare up. So there is no prevention.
I take fluconazol 125mg every other day as it makes my guts feelgreat and I eat whatever I want. A recent Baylor U medical school publication concluded that there was no prevention for a flare up ( I have uc) but you can do things to feel better , such as take antifungals. I found nystatin to work well also. No diet prevents a flare.
I also have lomotil in my car everyday and take one only if I get a soft stool that day. If I get a full flare up I take 3mg budesonide/day for 5 days.
I call it my emergency kit which allows me to hav e a normal life free from emergency rooms and doctors. Problem is finding a doctor who will prescribe those things and not want to just give you colonoscopies and prednisone .
I recommend stating away from specialists. I have only found gp s who are willing to prescribe in a practical sense. Gastros want to keep you suffering and think colonoscopies some how help.
I am a dentist and science author. I research treatments that work.
Reply posted for mysticmochi.
I've noticed so much response about C Diff, but I was surprised no one has mentioned fecal transplant. Has anyone had a fecal transplant in response to a C Diff diagnosis? I've heard it can clear symptoms in a matter of days. I found this website in case anyone is still experiencing symptoms.
http://thefecaltransplantfoundation.org/providers-trials/
Reply posted for kjb 22.
God Bless ya bud. Alot of people have positive feelings to surgery. Im glad too hear your positive. I recently been hearing that from my doctor cs it keeps coming back in my rectum while on entyvio. Its painful there. I dont know if i am a candidate for the j pouch cs of the flares in the rectum? I c doc Thursday. Anyways im glad you accept what you had too do and u feel good. Just think hopefully no more prednisone and these biologicals they have some side effects that scare the heck out of ya. My daughter keeps telling me to remove my colon its just a tough one. People like you are very brave .Good luck to you inspiration is what u can be for those of us you should remove it and dont
Reply posted for kjb 22.
I should have posted some kind of update here. It has been a hectic few months. My GI decided that humira was no longer working and decided to move me onto Remicade. They had me give some blood, and when I got back to the GI lobby I ended up passing out, which spurred a onslaught of more tests. GI was concerned that I had the beginning symptoms of toxic mega colon. They tested my inflammation levels and did a scope and it was determined that surgery was necessary. (All in the same day.. It was quite rough). My body had taken too big of a hit with all the weight loss, at this time I had been on TPN for a few weeks already. The surgeon refused to do a two step surgery for a J pouch with the state my body was in, so the next day they took me in and removed my entire colon. My rectum was left in tact and I was told six months from my surgery they would go in and make my J pouch. I am now stuck with a end ileostomy.
Overall it has been almost 9 weeks since I went through the surgery. I started getting better so fast after the procedure it was just crazy. Three weeks after the procedure I was completely off the TPN and back at work full time. (I did push myself a little too hard). At this stage I am better than 100%. I cannot wait for the ostomy to no longer be a part of my stomach, but it has made me feel more amazing then I have felt in a very long time.
Thank you everyone for your helpful comments.
-Robert
Reply posted for kjb 22.
If the cdiff is gone thats great. Humira takes time 2 get in ur system . i had no luck on humira. I guess the steroids r being given due to ur bleeding. I was on remicade back when i had cdiff i remember it took awhile too get better cs the cdiff plus uc really wipes u out. Lost alot of weight and i say maybe 3mos total 2 get 95 % better i had thrush from antibiotics ur swells and gets real funky what a mess but it will get better. Ur flare should relax with the steroids they work but side effects r tough. One day at a time we can try. Good luck with humira hopefully it works for u. They put me on entvyio in and out of remission. 25 years i have this its been pretty tough i hope u feel better ...good luck easy does it
Reply posted for mysticmochi.
Hi. With having uc cdiff is an infection in the bowels u can get it easily due to having uc if ur flare was bleeding alot as bacteria can gather at the inflammed area were the bleeding is. Or u can contract from public bathrooms etc. I had it years ago it took a few months for everything 2 quiet down. As cdiff will create its on havoc and take out of remission or vice versa. Alot of times they check my stools during a flare 2 c if any cdiff or other infections r present. Plenty of liquids for u and small consumption of pasta bland will give u some energy . best to you hope i was of help
Reply posted for hare.
I thought the same thing. When I had my first flare up I had just returned from the amazon so thought I had contracted a parasite.
I took metronidazole and the diarhea immediately stopped. Years later I had a flare up and had to go to the hospital. I learned then that a side efdfect of metronidazole is constipation. You do not hav e a bacterial infection. Fire your doctor.
Reply posted for kristendwyer.
I might had snswered before on this. Anti candidiasis only reduces chances of a flare. Budesonide stops the flare up cold. No side effects. Have your doc write it for 100 caps and buy on canadapharmacy.com for $1/ cap
Reply posted for mysticmochi.
I tried all sorts of different medications and Budesonide worked miracles!
However, since this is a short term steroid I had to try something else for long term.
I was on Cimzia for almost a year and it did absolutely nothing, so I switched to Humira. I have been taking Humira since March 2016 and after a few weeks ALL of my symptoms were gone.
Reply posted for capuchin.
Also i found Candidase (over the counter on internet) to work as well as prescription antifungals. I take it everyday.
Reply posted for mysticmochi.
Budesonide works great. Stay away from biologics. Take nystatin or flucanozole for the candidiasis. I am a dentist snd found a gp who suffers from uc. Most docs are ignorant and simply follow throretical guidelines instead of examining what works
Sorry for taking so long to respond to this. Humira never worked for me. I ended up loosing close to 40 pounds because I was unable to eat. I also became terribly anemic due to the blood loss. I had many appointments with GI but they wanted to make sure my body had time to see if humira would work... My most epic GI appointment came around and they came to the conclusion that I may have started getting toxic mega colon so they had me walk to get X-rays. On my return to the GI lobby I passed out and was taken to the ER. Following my admission into the hospital they did more scans and ran more tests and GI told me that they were going to put me on remicade for 48 hours at the maximum amount to see if my body would react.. if it didn't it would mean surgery... literally like a hour after that decision a surgen came and was encouraging me to opt into surgery so that they could do it in the morning instead of waiting until after the weekend.. he said that it was already dangerous since I was so malnourished... I didn't like that so I made my GI doctor come back to talk with me as to what caused the change, apparently test results came back and I indeed had started getting mega colon and everything was terribly inflamed (we knew that already..). Even through everything I feel my GI doctor is one of the best... I think my system just got too messed up to recover. I had surgery near the end of December and no longer have my dreaded colon. I never wanted surgery, especially one that leaves you with a crap bag hanging from your stomach... but imediately after surgery I felt so much better then I had felt in a year since my diagnosis. In 9 months I'll have two more surgeries to create and attach my J pouch. Things are looking up every day.
Reply posted for mysticmochi.
UC FLARES COME after you eat yeast products.
Reply posted for mysticmochi.
Mucous in stools or nose cold or vaginal yeast mucous infection is caused by yeast overgrowth from white bread. Stop white bread donuts and brewers yeast in beer and you will find that's it. Only thing I found about diahrrea is yeast eating your food and turning it into diahrrea. Stop yeast for a while you"ll never put yeast in your mouth again. Do not eat leavened bread from the one who created bread
Reply posted for mysticmochi.
I can only speak for myself, but my UC flares seem to be triggered by bacterial overgrowth. My last two flares were put into remission within 10 days by Metronitazole. C-diff is a gram positive bacteria. Vancomycin is generally for gram positive bacteria. I've read that gram negative bacteria have resistance to in. It's possible that the c-diff either didn't cause the flare or is not the only bacteria causing problems. The Metronitazole is gram negative.
When I have a flare I ask my GP for a 10 day regimen of metronitazole and with every dose take a good probiotic with every dose (min 30 billion) because I am also scared of c-diff. This approach has worked 2 out of 2 times so far.
Reply posted for mysticmochi.
Your story is almost identical to mine. In February I had so much blood I freaked out, never noticed before, went and saw a GI, prepped for my colonoscopy on my 31st birthday (what a way to spend your birthday) and went in the next day and was diagnosed with Ulcerative Pancolitis. I was immediately put on prednisone, felt better, then about a month or two later, way worse. Went to the GI, found out I had this lovely bacteria C. Diff... Off steroids, first round of antibiotics,nothing, then vancomycin. I was told that vancomycin would make a healthy person have diarrhea, awesome as I was going at least 10 times a day. remember when battling C diff, I got home from work (I'm a mechanic, lovely working conditions for c diff haha) laid in the bed and curled up in the fetal position. At that point I probably should've went to the hospital as I was absolutely miserable. My fiancé came home and stood over me and asked if there was anything she could do, sadly there was nothing. C diff with UC wrecks your life to say the least. I remember walking bent over because it felt better haha. It wasn't until almost the end, like 10-11 day that I felt the antibiotics were working but the C diff had made me flare horribly so even after antibiotics I was still messed up pretty bad. You won't feel great because the c diff will make you flare, but you'll notice a difference for sure. I remember I voluntarily put myself on a "liquid diet" which consisted of 20oz of water and a cup of broth a day because I was so sick I couldn't/didn't want to eat or even drink. I battled C diff for about 2-3 months, it was horrible. My GI verified the C diff was gone and then put me back on steroids and prescribed Humira as all symptoms returned immediately.
I heard Humira takes anywhere from 3 weeks to 3 months to work, that's what the Humira ambassador told me, I'll be starting soon as well. How are you now? Have you started Humira?
I also have been passing a odd amount of mucus... Is that a sign that things are healing up? Or is it just another fun symptom of the C diff. disease combo?
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