My husband was diagnosed with UC in July 2015. Although he had mild symptoms prior to the official diagnosis (minor blood in stool), it was until he underwent a biopsy to rule out prostate cancer and they put him on multiple antibiotics prior to the procedure that set things in motion.
We are from New Jersey, close to the Philadelphia area. My husband is an electrical designer / engineer. His hobbies include some pretty sophisticated wood working, specializing in music equipment. He has built multiple custom guitars and a violin. He is currently working on a 3-guitar project.
His symptoms:
He currently is diagnosed with cdif, marked by frequent loose bowel movements and gas. He experiences at least one accident per day, which is probably the most frustrating, embarrassing and discouraging aspect of the whole illness.he was initially placed on Flagly, and then once the labs confirmed the cdif, he was placed on vancomycin. As soon as the 10 day dose was done, the cdif came right back. He is now on another course of vanco, which he will slowly transition off of.
He is able to work, mainly because his supervisors are really understanding and he has easy access to a bathroom. He works flexible hours, which is great because he has some any doctor appts. and lab studies to do.
UC and C-Diff
My husband was diagnosed at the age of 60 with IBD / UC in July 2015. It came about after going on multiple antibiotics for a biopsy procedure for prostate cancer. He was very, very sick, lost 60 lbs in about 2 months, was weak and lethargic and very anemic. He underwent surgery for prostate cancer and came out of it with good results, but the UC continued. He was out of work for 3 months and then went back on month #4. It’s been tough on him going back, due to all the medical appts., lab work, and sometimes just not feeling well. But mentally, it was good for him to have something else in his life besides UC.
He started on Humira in month #4 and is still on it, one injection every two weeks. However, when his GI symptoms started to return, he was. He led for cdif and sure enough it was positive. He started on vancomycin for 10 days. Once the meds stopped, the cdif returned and he is now back on the vanco.
The UC has completely changed our lives. We no longer go out much, I.e., dinner, movies, friends / family members’ homes, parties, vacations, etc. it is just too stressful for both of us. I often feel like we are trapped in our home. It has been very stressful on me as the caregiver, because no matter what I seem to do to help him, it’s not enough. We eat a very controlled diet, we try to keep stress to a minimum, we see back up specialists at the U. of Penn, and he takes multiple supplements and high dose probiotics.
Right now, I would love some encouragement that there is some hope for a more normal life. I know he will forevere deal with UC, but some semblance of normalcy would be great.
Medications / Supplements:
He is following a low residue, soluable fiber diet, with no dairy, alcohol or caffeine. We see a nutritionist for guidance.
He is on Humira, one injection every two weeks. He is on prednisone 20 mg. daily. He is currently on vancomycin for cdif, 4 pills per day.
Supplements include: VSL#3, 4 capsules per day, multi vitamin, vitamin D, and turmeric.
written by Terry D
submitted in the colitis venting area
My husband was diagnosed with UC in July 2015.
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They are going to have to take him off the Humira in order to give him a chance at fighting the C Diff. I have been fighting it for 4 years. They had to stop treating all of my inflammatory issues because everything I have been on triggered the C Diff. C Diff is horrible. If he gets to the point where he has no control he should really be hospitalized. That’s always my cue to hit the ER.
I also developed a C Dif infection after prophylactic antibiotics. I took a course of flagyl but symptoms were back after the flagyl was completed. Then I was on a tapering dose of Vancomycin for 8 weeks. I haven’t been retested but my symptoms have not come back. I currently have mild to moderate UC symptoms and am doing everything to stay off prednisone. C Dif has been successfully treated with fecal transplant but it is not offered in many areas. Doctors are also hesitant to use it on people with UC. If I develop C Dif again I am going to insist that fecal transplant be tried. Good luck. I hope the tapering dose of vancomycin works.
Fecal Transplant has been very successful in treating C diff, but it didn’t work on me. I’ve had two.
Where did you have the transplant done? My husband has severe colitis was diagnosed inNovemeber. Hospitalized 2x once in Dec for 10 days came home for 10 and back in for another 8 days and diagnosed with cdiff. He has been on Vancou for 10 was and he still has cdiff. He has had 2 positive tests and he is so sick and lots of pain. The Dr is sending him to another Dr to get the fecal transplant done. Really hoping it works Kinda getting to the end of the rope..we can’t go anywhere , can’t do anything….it SUCKs for him and also me his wife .
I had Mine done at Rapid City Regional Hospital in Rapid City, South Dakota. I know that they are also done at Mayo Clinic.
My latest discovery… daily natural liquid vitamin e enema before bed. It stopped the latest flare up, no bleeding after a year of it, within two days. Since then I have gained about 15 lbs. I am also on the SCDiet now for over 15 years. After a bad year of ups and downs realized that nothing worked for me until I got the bleeding stopped. Luck for me only the tail end of my colon has been inflamed.
Where can I get more info on how to make the vitamin E enema?
This is great info from all of you. Thanks! Our 2nd opinion doc already spoke with us about the fecal transplant so I know it’s an option. He’s in charge of the IBD dept so I know he is very familiar with all that’s involved. If this round of vanco doesn’t work, that is our next step. Also, 2nd opinion doc said he could stay on the Humira while treating the cdif -???
Local doc wants to do another colonoscopy first to rule out CMV virus – ????
What about this SCD diet? All the docs discount the role of nutrition. My husband is on a low residue, soluble diet which is already pretty restrictive.
My son is 12, had his entire colan removed this past summer. Now is healthy, no medications, eats whatever he wants, plays basketball, and swims. He dosnt even care he has a bag because the pain, suffering, embarrassing accidents are all gone.
Terry, he can stay on Humira while treating C diff, IF he is diagnosed with refractory C Diff (which is what I have) then stopping all colitis treatment is better to attack C diff.
With a fecal transplant it is customary to treat with Vanco, or Dificid up to the day of transplant and then stop treatment and test at 2 weeks and 4 weeks post transplant. I wish you all the luck in the world. C Diff is HORRIBLE.
My brother had UC and Cdiff. Fecal transplant helped. Review DIY on fecal transplant. Use stool of healthy person. All directions are available , just do search on FT.
Good luck.
This sounds horribly similar to things I’ve gone through, I’d say personally once your colon and intestines have been infected with c-diff, it’s almost like it just ravages the inside of your body. Leaving you with a horrible mess after, that never goes away. I believe that once you get c-diff and have uc there’s really nothing you can do to manage your symptoms to have a some what normal life. I just recently went through with the j pouch surgery, and it was the best desicion of my life. If I ever wanted to have a quality of life and be able to spend my time doing the things I love most and with my family, it was nessacary. I think that your husband should look into getting the surgery, of course it isn’t an easy step to take and there will be times where you question if you made the right decision, but over all I am on the road to such a better life than running to the bathroom 24/7 being in pain, being a prisioner of my house etc etc. The doctors will try and say well why don’t we try humira once a week…..No I can tell you now that won’t make a differnce. You pretty much have to go to your GI and say I’m done I can’t live like this anymore I’m ready to take the next step, and let me tell you it’s only been a month since my first surgery, I go back in March to have a 2nd surgery and my quality of life is night and day. I’m only 28 and have a 13 month old, and I am able to be the mom I’ve always wanted to be. I hope your husband takes this advice and uses it to his advantage because no one deserves to live in that hell, and you know that’s it’s nothing short of that. Best of luck.
The one thing that stands out about treating UC is that no one treatment works for everyone. At least we are talking more openly about the disease now. Several of us have recently posted about symptom relief from taking high dose cucurmin.
Thanks everyone. This info is very helpful. It is good info to take with us to next doc appt especially about the cdif and fecal transplant. I know surgery is an option down the road but I’m hoping we can avoid it if possible. Just scares me.
Hi, I’m currently in hospital due to my uc flare up. Diagnosed 5years ago, hadn’t had a flare up until twice within the last year. 6monhs ago the prednisolone and enemas put me in remission but wasnt so lucky this time. Had no affect. The steroid infusion also had no effect so I’m now trying a liquid fusion called remicade(here in Australia). Have it week zero, 2&6. If successful that’s all you need otherwise it’s every 8weeks.Has stopped bowl movements from 12+ a day to about 5with little to no blood anymore. Had a set back last night saying I’ve tested positive for c-diff so I’m now also on antibiotics for that and certain vitamins. Now stomach pains have worsened today since starting antibiotics I feel. I’ve been in isolation hospital since Monday night, it’s now Saturday night. Still not sure when I’ll be released now due to the set back of c-diff. Supposed to be heading overseas next week for 3weeks on Thursday so fingers crossed! I’ve been working on EFT tapping techniques releasing stress which I’m finding effective!