Newbie Suffering - Looking for Encouragement/Advice

Summary:
Had some urgency, some blood when going so I went to the PA. Diagnosed me w/ Gallbladder issues due to family history. Went to see a GI just to make sure and set up a Colonscopy. Tests revealed "Severe, Active Ulcerative Colitis in the Transverse Colon." Stool sample revealed severe case of "C Diff Infection."

I started Vancomycin 12/17 - 125mg 4x daily. My GI tells me this has to be cleared up before the UC can be addressed. Some symptoms (Fever and Chills) of C Diff have improved but I'm having 10 - 15 loose BM's a day with blood almost always present. Had an appointment yesterday - Doc said I need to stay the course and when this is clear, I will probably go on Remicade.

I am having a really difficult time dealing with this. I am typically super high energy, in shape, etc. I am managing to squeeze in a workout every few days but it's very difficult to stay positive. I know for other people the blood is not that big a deal (it's not like it fills the bowl) but it creeps me out.

My folks are super concerned to the point where I can't disclose everything to them because they cry/go off the deep end. I guess I'm just reaching out to the far reaches of the internet for some hope. Thanks for reading and any advice/insight you have is more than welcome.

sorry about your diagnosis with UC, C. diff makes things worse. I have some questions and those might be able to help figure some things out.
firstly, when he said severe active ulcerative colitis in the transverse colon did he mean that the colitis is severe and active through the transverse colon or that there is only inflammation there?
were these results confirmed by pathology?

secondly, it is a bit odd that he is not treating your UC simultaneously as the C. diff. I would advise you start max dose of oral mesalamine. rectal mesalamine will probably not be useful yet as you are having many bowel movements a day.
you should have a second stool test to see if the C. diff is still active and causing issues or if it is "just" the UC at this point, I am asking this because the C. diff infection should not be still rampant after about a week of vankomaycin. it is also possible that you have reinfected yourself so be sure to practice excellent hand hygeine- washing with warm soapy water (purell will not get rid of C. diff spores) and making sure to bleach all hard bathroom surfaces with a 5-10 percent BLEACH solution. normal cleaners will not kill C. diff spores.


I agree with the remicade if there is not immediate improvement with the mesalamine as the second tier of medications that people usually use are immunomodulators and those take several weeks to have any therapeutic effect. they do however, work very well in combination with remicade as they will help your UC and they will also help you from preventing antibodies towards remicade.

feel better and feel free to ask any follow up questions
also if you post a signature than people can see what your sitation is without having to ask each time
this can be done in "my profile"

I added a signature - hopefully it works.

I did not know I could be treated for both simultaneously. My Dr. told me I needed to take care of the C Diff first. I practically begged him to give me something, anything. I even asked about fish oil, multi-vitamins, probiotics, etc. He said none of that will do any good. I am nervous about the Remicade.

My Dr. is a really nice guy but he is fairly old and I worry he's not up on the latest in medicine. In his defense he is extremely thorough (took 40 biopsies during my colonoscopy and ordered a ton of blood tests). I have access through a "Patient Portal" so I can see all my levels. If there's any specific thing I can list that would help, let me know.

I have the best insurance money can buy with locked-in, super low co-pays I just don't know about 2nd opinions. I would like to get a second opinion I just don't know how to do that without making him mad and making sure my insurance covers it. I could stay in the area for a referral but I also live a couple hours away from Upstate Medical (Syracuse) and Fletcher Allen (Burlington) which are excellent hospitals.

Most doctors should not have issues with 2nd opinions but you need to get over fear of offending your doctor and put your own health first not your doctors feelings. Do some research on your best area UC specialists and get an appointment there. A UC specialist is called for not a generalist GI, that doesn't mean the specialist is 100% correct (no one has all the answers in UC) but you will have a "second opinion" and then make your own informed decision on your treatment.

Some GI's start with big guns first (Remicade) and others go up the ladder starting with mesalamines. Mine started me on mesalamine (Asacol) and I spent years trying various oral meds with little relief. I never went to Remicade. One of the issues with going on Remicade is that there is no getting off it as far as I've read) so "if" you would have responded to mesalamines you'll never know that.

There is no one answer, it's always your decision guided by your GI and the more informed you are the better you'll feel about it.

If you have a C. diff re-occurrence you may be eligible for fecal transplant, something I wanted but my GI said I wasn't eligible because I did not have C. diff. read up on it, it's a viable choice. A teaching hospital may have this option.

Good luck. It takes some time to get things under control but you seem very capable. Welocome to the forum.

Thank you everyone for the input. I am definitely getting a 2nd opinion and will try and make sure it's with a UC Specialist. Starting right off with a "Tier 3 Med" like Remicade as someone referred to it scares me.

Not sure if this matters but just for additional background I am typically super healthy with a strong immune system. I'd never been in a hospital for treatment, had my blood drawn, or really any medical procedure before this fall and I'm almost 34. The nurses call me an "ideal physical specimen" b/c all my vitals and everything they tested me for other than this was perfect. Up until this I exercised and was probably in the 95th percentile or higher being in shape for my age. I'm really, really hoping there's a chance my body fights this infection off quick.

Tomorrow I'm going to buy more food that helps with UC Flares (have researched this pretty heavily). Any specific recommendations for vitamins, etc? I was planning on Fish Oil, Vitamin D, multi-vitamin maybe. Sorry my posts are so long but I'm kind of stuck in my house due to this situation. Thanks again everyone!

If Vancomycin doesn't clear up your C Diff then believe it or not, fecal transplants have over 90 percent cure rate for C Diff.


I agree with the previous posters on this thread who said that a drastic biologic like Remicade should be used as a last resort. If your doctor insists on Remicade then no problem, just get a 2nd opinion. Most doctors would probably agree that it is much safer if you are able to maintain remission with the mesalamines rather than those big gun meds. Ask your doctor about mesalamine enemas, they are the safest and most effective meds for most people even though most docs seem reluctant to mention them.


You asked your GI about “fish oil, multi-vitamins, probiotics, etc.” He said none of that will do any good. Almost all doctors say alternatives are ineffective. But many of us have found that a food diary helps symptoms along with various supplements especially vitamin D and probiotics. Curcumin and fish oil are also popular. Check out our signatures for various options that have worked for us and see what helps you individually. Of course nothing works for everyone so you need to find what helps you.

immunomodulators and remicade suppress the immune system in different ways. remicade binds to an inflammatory cell called tnf-alpah. this cell brings on the inflammation in UC. so anti-tnf medications essentially tie up this cell to prevent the inflammation in your gut. immunomodulators stop the proliferation of T and B cells (other immune cells in your body).
either way, they will prevent you from fighting infections as easily as you have fought them in the past. they will need to test you for things like TB, cmv, varicella (virus that causes chickenpox and shingles), hepatitis etc...

even though many people are horrified at the prospect of starting remicade as the first med it actually makes quite a bit of sense. many leading academic centers are starting with biologics instead of immunemodulators with big flare ups because htey work quickly. it makes sense to add the two simultaneously as research shows that a combination of the two is more effective than either one alone.
by starting with a biologic you may be able to avoid steroids which is a good thing.

I am being treated in one of the primary IBD centers in the country and they (a team of IBD experts decided, not just one GI) skipped the second class of meds and my first IBD therapy was remicade
i did have a couple of days of lialda before hospitalized (and that was a different GI who does not have much experience with IBD) but it was discontinued because it was not doing anything for me

getting a second opinon is always a good idea but I just wanted to let you know that this doctor might actually be current as newer data is suggesting starting biologics sooner rather than later (although much of this is in Crohns not in UC)

good luck

woodstock69 said...
I have the best insurance money can buy with locked-in, super low co-pays

Maybe that is another factor in your doc's decision to place you on Remicade right off the bat. He knows that you will be able to afford the astronomical costs of those infusions.

Use your own common sense about this. Biologics can curb inflammation which is a risk factor for bowel cancer. But if you give mesalamines a chance then they too might curb your inflammation without suppressing the rest of your immune system. And mesalamines have the added benefit that they are proven to have other anticancer properties on their own and fewer side effects.

Has there been legit research about this excersise theory.
It has been proven in the rest of the population that intense excersise is very good for us.
Just because several athletes come down with a disease does not mean it worsens the disease.
In fact I know many people (myself included) who get little to know excersise and have come down with Ibd.

Correlation does not imply causation. Saying not o excersize because athletes Hav Ibd islike saying don't eat ice cream cuz in the days that more ice cream is consumed there are more drownings...

I hope I don't sound harsh but you need to be very careful that information makes sense. Always weigh benefits versus risk. Example: One of the reasons I don't like very strict and limited diets for Ibd is because it is hard enough to get an intake of all necessary nutrients and limiting the diet more may only hurt the patient. If foods have been proven to be harmful ( say carrageenans) than by all means avoid them if you like.

Oh God no, I don't think exercise causes IBD at all. In fact, my GI has spouted multiple studies on moderate exercising HELPING symptoms. What I am referring to is extreme exercise. Extreme exercise is very different. I used to still try to keep up with my intense dance training (3 hours of ballet is very hard on the body) during a flare and think that I could run 10 miles (in diapers!) It was ridiculous. I needed to give my body a rest. I remember reading in runners magazine that runners who run over 6 miles mess up their immune system for 24 hours after a long run.

I can't find the study now but here is another one:
"http://runnersconnect.net/running-training-articles/running-and-getting-sick-part-ii/

"Looking at several biological trials studying the effects of an exercise load on the cellular response of the immune system, she demonstrated that moderate exercise has either no effect on or has a small stimulating effect on a range of immune functions, from immunoglobulin levels to “killer cell” activity. On the other hand, it appears that heavy training impairs the function of these same mechanisms."

This is what I meant about making your immune system go up and down with extreme exercise. I wasn't saying not to exercise. I just think we all need to take it down a notch during a flare. I am sorry if I was not clear. For example, I used to hate yoga. (not intense enough!) now I have learned to embrace these more calming exercises.

And with that I am going for a short 4 mile run now....It is 60 degrees in New England today! Hope everyone has a wonderful holiday.

One thing I suggest when you start adding supplements or probiotics. Try one at a time for a few days. That way if you have a bad reaction you know which one caused it. I myself can't take fish oil and some probiotics make me want to explode! Go slow with the probiotics.

Since you have such great medical coverage it might be to your advantage to ask your doc for prescription VSL#3DS (ds=double strength). It's expensive but your health insurance might pay for it. Ordinary VSL#3 has 450 billion CFUs, the DS version has 900 billion. Most commercial probiotics contain 5-50 billion CFUs.

Different strains vary for each individual. You can find research published by the government in pubmed.gov that proves the effectiveness of almost a dozen different strains of probiotics for IBD: S. Boulardii, Reuteri, lactobacillus GG, VSL#3, etc. And you will find from our signatures that some of these strains help and others make us much worse. As Sheri said you should start slowly to be sure it's safe.

You can take advantage of the forum's search function to check out meds and supplements. For example here is a recent thread on lactobacillus gg:
https://www.healingwell.com/community/default.aspx?f=38&m=3549494

Not in my symptoms. My energy level was better I was able to go shopping then clean my bathroom thoroughly with bleach. The C Diff is so brutal. I'm down about 15 lbs. or so since it hit me. My voice is hoarse. I'm a lot better than I was before but so far away from what is remotely normal for me. I can't go to my Aunt's big xmas party tomorrow b/c I'm contagious. Everyone prolly goes through the stage of "why is this happening to me?" That's where I am...