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Crohn's Disease Forum » General IBD Discussion » Crohn's with C-Diff Support Group


 
07-01-2014, 08:39 AM   #31
SugarberryGA
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Emily, I'm so sorry you had to go through that!! Having C.Diff and Crohn's sure makes things more complicated. I went to see a new gastroenterologist yesterday and am feeling a bit better about things. He wants to see if I test negative for the C.Diff and if I do, then that means I'm having a Crohn's flare. It's definitely a process of elimination (no pun intended). Hope you're feeling better!!
07-01-2014, 10:04 AM   #32
emily_v
 
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Emily, I'm so sorry you had to go through that!! Having C.Diff and Crohn's sure makes things more complicated. I went to see a new gastroenterologist yesterday and am feeling a bit better about things. He wants to see if I test negative for the C.Diff and if I do, then that means I'm having a Crohn's flare. It's definitely a process of elimination (no pun intended). Hope you're feeling better!!
I feel for you! My C-Diff brought out my Crohn's disease. I never knew I had it and I had no signs what so ever before my C-diff!!
07-11-2014, 11:42 AM   #33
lsimonson
 
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I'm a Mom of a 25 year old son with Crohn's. He got c diif March 2013 and was then diagnosed with Crohn's. He had a horrific time with the predisone and weaned himself off all meds. He was doing great for many months but recently got flare up and is really suffering now. He's now on 6mp - 50 mg, sulfasalazine - 500mg 2 x a day, and endicort 3mg. He's not been able to work and barely get off the couch for 5 days now.

We are at a loss of what to do! /any suggestions on diet?
How about fecal transplants? We've read about a lot of success. We are anxious to find a natural path rather the the continuos onslaught of drugs the doctors insist upon.
07-11-2014, 11:57 AM   #34
Searchingforhealth
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Isimonson,FMT is a good option! There is a Facebook group that discusses this topic extensively. Also, has he tried low dose naltraxone (LDN). There is info on this forum and yahoo groups dedicated to giving you the research. Also lots of vitamin D is good for IBD. Has he explored the use of cannabinol with high CBD. I understand NY just made it legal for medicinal use. I keep reading everything I can that is being researched on potential treatments. Hoping he finds the right path to healing!
07-11-2014, 12:05 PM   #35
SugarberryGA
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Isimonson, how is your son doing on 6MP? I met with my doctor yesterday and he wants me to start on it next week. Thanks.
07-11-2014, 02:00 PM   #36
lsimonson
 
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I think it's too early to tell. He doesn't seem like he's improving at all! This is very scary as your just taking the Dr's word for it and then your all kinds of things with no real hope of geting better - just masking the sumptoms
07-15-2014, 05:23 AM   #37
ronroush7
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Last night, my wife said she could smell my bm. I have heard that sometimes that can be a symptom of c-diff.

2
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
07-15-2014, 08:25 AM   #38
SugarberryGA
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I'm happy to report that I am C.Diff-free! I was recently tested and tested negative. I hope all of you get the same result the next time you're tested.

Ronroush7, the smell is AWFUL! It's like nothing I've ever smelled and hope to never again.

Word to the wise... while you're suffering with C.Diff, buy a tube of Boudreaux's Butt Paste. Your butt will be happy that you did.

http://www.drugstore.com/products/pr...fRQaApAv8P8HAQ
07-15-2014, 09:04 AM   #39
ronroush7
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That's terrific news.

2
07-18-2014, 10:07 PM   #40
Joleen23
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Glad I found this support group I have had Cdiff 3 years ago whilst in hospital , it cleared up quickly, I recently (may) had some antibiotics because of my excema becoming infected which I turn brough C-diff back into my life was hospitalized in June with it, now July and had a few courses of metronidazole and have had 2 negative stool samples , my only problems is , the minute I finish a course of antibiotics the symptoms start again (explosive D - too the point that I'm having accidents , nausea, fever) my doctor isn't being massively helpful , there is another antiobiotic that they can try but he said it's very strong so not yet. I've been off work for 3 weeks now (I work in healthcare so their very strict about working with this condition) am very fed up now , I just want to be well again
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Meds :

Methotrexate 20mg per week
Omeprazole 40mg per day
Ferrous sulphate 3 x tablet per day
Folic Acid 1 per day (5 days a week)
Ranitidine
(trammadol & Paraccetamol for painrelief

Diagnosed Nov 2010 - Crohns Colitis
(bowel problems since 16yrs) 29 Yrs old now
So far tried Asacol,Aza,6mp,Remicade
07-18-2014, 10:18 PM   #41
Searchingforhealth
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Joleen23, have you thought about doing a FMT? If the GI isn't responsive find a healthy donor, have him tested for hepB, HIV etc and do it yourself. This really helped get rid of my daughter's CDif. It may also help your colitis symptoms.
07-18-2014, 10:24 PM   #42
Joleen23
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My GI is normally pretty good when you can get hold of him , it's my regular doctor that's being unhelpful , I've heard of FMT , I may try again to get hold of my GI and see what he thinks. I live in the Isle of Man (very small island in the UK) a lot if treatments don't get provided at out hospital , it's a bit behind times , a lot of our surgery a and such have to travel to mainland uk for treatment. I have an appt with my GI in about 2 weeks anyways so if I can hold out till then maybe he'll discuss it with me. Thankyou
07-19-2014, 02:55 AM   #43
Spooky1
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Must agree, Joleen. Down here in Cornwall the hospitals need to save money and therefore not spend it on us. I have been looking for a clinic that will do this cheaper than the somewhat expensive Taymount clinic. Believe it or not it seems getting it done in Australia could work out cheaper than the British clinic. I'm not sure the Taymount have medically qualified staff. Read up on them before approaching. But it is expensive.
Good luck with whatever treatment you get.
08-20-2014, 08:42 PM   #44
pink&green
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Just got a call from hubby GI(nurse) test came back positive for C-Diff he just got out of the hospital from kidney surgery. This is his second bout with C-Diff (2012).
__________________
Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

LeeLee
09-23-2014, 12:56 PM   #45
ronroush7
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I am sorry, pink&green. Sending prayers. To all, is it possible to have c-diff and it not show up on the test?

2
11-30-2014, 12:09 AM   #46
Ann Morgan
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I am so pissed off. Here is my story. I started getting diarrhea in 1997. Was prescried Questran by my PCP. I had a lower G I and Flexible Sigmoidoscopy by Internal Medicine Doctors. Diagnosis : IBS ? Went to GI doctor in 2006. Diagnosed with Ulcerative Colitis. Took Asacol then Lialda, plus the Questran. Was doing okay. May 2014, drastic changes in my UC. Now I was severely constipated ! New GI doctor did a colonoscopy, said the result was "normal". New doctor said to discontinue all of my colon medications ! SAY WHAT. Never had a doctor tell me that. I cannot quit taking the Questran EVER because if I do I get very sick with yellow-watery diarrhea. Then I was informed by that I could keep taking the Questran "as needed". I had been taking 2 packets a day for years. Now with the new constipation issues, taking two a day made the constipation worse. Tried one a day and I was having success in keeping my bowels in order ( not the terrible diarrhea I had for years and not the severe constipation I started getting in May 2014. )

So, now, here is the part that really pissed me off........I got sick recently. Symptoms: sore throat ( NOT STREP), laryngitis ( eventually I could not speak at all and I had to use paper and pen to communicate ), cough, blowing my nose with green snot/mucus/phlegm. I have had laryngitis many times over the years, but it was just sore throat then LOSS of voice. ( Yes, I still have my tonsils. ) I went to my PCP about the green snot ( which means infection, right ? I had been seeing this PCP for 7 months, gave him a detailed list of my medications/ health conditions / surgeries when I first met him.
So on November 17th, 2014 he prescribed me an antibiotic. I took the first antibiotic for 7 days and had terrible diarrhea for 5 of those days. I got prescribed a different antibiotic. I took that one for 3 days. STILL terrible diarrhea. So after ten days of antibiotics I just did not take anymore because of the terrible diarrhea. . My first prescription was for 7 days and my second one was for 7 days. I did not call my PCP after I quit taking the second antibiotic. I wrote something on this site about my antibiotic symptoms and the folks told me that antibiotics can be bad for my Ulcerative Colitis and that I should always let my doctor (s) know about my UC when antibiotics are involved. My PCP knew I had UC !!!! I was sick for three weeks with the throat/laryngitis/cough/green snot/even wore a surgical mask for a few days so that I would not spread my germs and so I would not acquire any new germs. NOW I am stuck with this new diarrhea because my doctor gave me antibiotics !!!!!!!

I am now back to taking 2 Questran Packets a day and taking the last of my Lialda pills from my very last refill. I am so mad about this new diarrhea. I actually almost had a diarrhea accident the other day at the Post Office. There are no bathrooms in the Post Office. Had to hop in my vehicle and drive real fast over to a Subway restaurant. So, here I am now, with diarrhea caused by antibiotics and I don' t know how long it will last. I don't like the GI doctor that I went to this year ( I had new health insurance ). So, I will have to find a new GI doctor in 2015 and start all over again
(Sigh).

I am going out of town over Christmas time and I am mad that now I have this new diarrhea. I will be visiting my sister and her family. She knows about my colon disease but she doesn't understand it. She knows it causes me diarrhea. She is a very nice person but she doesn't understand that when I say I need to go to the bathroom that I mean RIGHT NOW.....not 10 seconds from now. Well, she has a brand new car, so let's see how fast she starts to drive it when I am in her car and I say " I have to have a bowel movement and I need a bathroom SOON !!!!".

Tell me how long I will have this diarrhea caused by antibiotics ? I looked it up online and did not like what I read. Should I call my PCP on Monday and tell him that I am still having the diarrhea even though I am no longer taking the antibiotics ? I can't call my GI doctor that I have right now because he is an idiot.

Thanks for listening !!!!!!!! I have an MRI on my kidneys tomorrow, I have a 1cm renal cyst. I hope I don't feel like having diarrhea while in the MRI tube. Ahhhhhhhhhh.

PS: If you have ever read any of my posts before, you know that they usually start out as a short story and end up as a novel. :-0

Last edited by Ann Morgan; 11-30-2014 at 12:28 AM.
02-12-2015, 05:48 AM   #47
Robertsba92
 
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I was diagnosed with Crohn's disease in 2011. I was a sophomore in college. I am now 22 years old and have had cdiff 4 times in the last 16 months. If I'm not battling the cdiff I am battling my Crohn's disease. I was forced to take a medical withdrawal from college when my disease was not under control. In my last cdiff episode I was hospitalized 3 times and was very close to having a fecal transplant. Has anyone had this before? The reason I have joined this website though is because I would love to find other people who are battling both cdiff and Crohn's. Yesterday I went for my 7th Remicade treatment. At about an hour in I started sweating, then wheezing. The next thing I knew I stopped breathing, my throat shut, my entire body turned blood red and my blood pressure a plummeted. The nurse yelled "code blue and were losing her" I have never had such a traumatic and deathly experience before in my entire life. I thought I was going to die. Luckily they found someone who could help me and the ambulance arrived and I'm okay. Sometimes I feel there is just no hope for me because I can never catch a break. If I'm not battling my worst episode of cdiff im about to die from my Crohn's treatment. Has anyone had a reaction like this after 7 infusions?
03-12-2015, 01:51 PM   #48
renaecihacek
 
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My father is in the hospital and c diff test came back positive. He has had 3 bouts of c diff already and I am pushing for the fecal transplant. He is scared and depressed and the doctors are going to release him tomorrow. The GI's that he is seeing do not perform the fecal transplant and the Mayo clinic will not take Bluecross Blueshield. He is having horrible cramps and having too many accidents. He is now 115 lbs and is gagging on food. What can I do??
03-18-2015, 07:40 AM   #49
lookame
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I just had a stint of c-diff about a month and a half ago. A week ago had a colons copy since my GI felt I had 2 issues going on (I was in a flare and I had c-diff). I got c-diff out of the blue. Its possible I could have had it from when I gave birth 7 months ago and it just slowly got worse until last month but it seems unlikely.

Anyway my colon shows extensive pancolitis and bleeding ulcers again. I'm looking at a surgical consult and I'm waiting on biopsy results to see if i still have underlying infection. I'm curious how long it usually takes for your colon to heal after c-diff? Does anyone know?
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Diagnosis: Confused officially diagnosed in 2010

Bloodwork is indeterminate IBD, biopsies are crohns positive, symptoms and visually it's UC

Current meds-
Prednisone, humira, 6mp, and lialda
awaiting surgical consult

Mom of Little Z
eosinophilic esophagitis 5/2015
03-18-2015, 06:35 PM   #50
Ann Morgan
Senior Member
My old GI was not on my Insurance plan last year
Went to a new GI. I did not like him. I had a normal colonoscopy and was told to discontinue all of my colon meds.

Fast forward to today. I saw my old GI today because I wanted his opinion on some things from last year. Old GI is a great doctor. He said to go back on the Lialda and I should always take it. I am also continuing my Questran. He wants a stool sample to check for c-diff. He is not on my Ins plan. I brought his paperwork/instructions to my PCP. PCP will see me on March 31st. Then PCP will order the c-diff test and my Ins plan should cover it.

I DON'T KNOW WHAT C-DIFF IS !!!!!!!
03-19-2015, 03:44 AM   #51
Spooky1
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there is a whole thread on it on here. So many Crohnies suffer with it. I've had it numerous times. Is bad diarrhoea and sickness. Google c-difficile (spelling might be wrong). It's hard work to cope with when you get it with crohns or colitis, and I think I've picked mine up from gastro departments or the doctors.

Good luck with the tests Ann.
03-19-2015, 08:52 PM   #52
Ann Morgan
Senior Member
I have Ulcerative Colitis, not Crohns. I think my doctor just wants to make sure I don't have the c-diff just to be on the safe side ? I spoke to a lady today that said if a person has c-diff that they have to be hospitalized !
03-20-2015, 04:58 PM   #53
Spooky1
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Hi Ann, I must say I have never been hospitalised for C-diff, even with Crohns. Think they don't want us giving it to other patients. Could be the NHS though, no money to spend on patients.
03-20-2015, 06:43 PM   #54
lookame
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I don't think you always require hospitalization if you have c-diff, only if you require iv fluids. I did a 10 day coarse of Flagyl at home and didn't go to the hospital...though it was pretty painful and I had a fever of 102...probably should have gone to the er...
03-20-2015, 07:52 PM   #55
Ann Morgan
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Yeah, I always panic about everything and go to the ER! I have been trying to control this obsession with the ER. There have been a few times over the years that I went to an Urgent Care Clinic or waited to go to my Primary Care Physician when I really SHOULD HAVE gone to the ER! Ugh.

Thanks for all of the information.: - )
03-20-2015, 11:39 PM   #56
Ann Morgan
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okay, on the internet it says there are three different kind of lab tests that they can use to test for c-diff. which tests have your doctors used ? I would like to know which is the best and most common and accurate test for the lab to use before I see my primary care doctor on march 31st. thanks for your help. I am probably worrying about nothing, but I am glad that my old gastroenterologist is going to have me tested anyhow.
04-01-2015, 01:55 AM   #57
Ann Morgan
Senior Member
I saw my old Gastroenterologist, whom I trust, recently. I talked to him about some things. After our conversation he recommended a c-diff test. He is not on my Health Insurance Plan, so he wrote out a paper for me to bring to my Primary Care Physician. I saw my Primary Care Physician today. My PCP ordered the c-diff test. Today I had to provide the lab with a stool sample. I don't know which c-diff test they are going to use or how long it will take to get the results. I saw a new Gastroenterologist last year and I don't like him, so I just paid cash for one visit to my old Gastroenterologist recently.
Okay, does anyone else get grossed out by doing this stool sample thing ! I did !
04-01-2015, 05:31 AM   #58
peluchde
 
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Hate it! I even have the lab lose it once and had to repeat the test! Recently had to check stool constantly after a pillcam was stuck for 42 days. Makes me hate these bodily functions!
04-01-2015, 01:09 PM   #59
Ann Morgan
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I could NEVER talk to my sister about poop. She just tries to change the subject. Unfortunately my Ulcerative Colitis is a part of my everyday life. Did I have diarrhea today ? How many times ? Did I cramp up ? Did I have to run to the bathroom today ? Did I have constipation today ? Was my Acid Reflux acting up today ? And I always worry about fistulas and abscesses coming back. I would rather have a broken leg than have an Anal Fistula again or a Rectal Abscess. ????
04-01-2015, 08:21 PM   #60
Ann Morgan
Senior Member
I have c-diff.
I gave a stool sample to the Lab just yesterday.
I received a phone call tonight, after hours, from my doctors office.
I am very sad.
I honestly thought I would just get a letter in the mail a couple of weeks from now telling me that everything was OK.
Boy, was I wrong.
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