HealingWell
Search Close Search
☰

C-Diff + proctitis, frustrated (new member)

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/14/2011 3:23 AM (GMT 0)
Early spring of this year I was put on antibiotics for a cough. The cough subsided but then I started having severe d w/ blood. Although I tested negative for it my primary care doctor suspected c-diff (apparently negative tests are common) and put me on Flagyl for 10 days. It did nothing. So I was sent to a GI doctor and had a colonoscopy. I learned I did, indeed, have c-diff AND proctitis.

I was put on Vancocin for 10 days for the c-diff. Still positive so then I did a Vanco taper, which seems to have done the trick (two negative tests, just took my last Vanco, still have two more tests to go).

However, I'm having a terrible proctitis-related flare-up. For proctitis I've been taking three 750mg capsules of Balsalazide with every meal (so nine a day) and was doing a Mesalamine enema at night. The Mesalamine enema was increased to 2X/day but I was unable to hold in the day one. So my GI doctor suggested I quit the Mesalamine and try one Hydrocortisone enema at night for two weeks (along with the Balsalazide). And if that doesn't work she said she'll want to see me earlier than my scheduled November appointment.

It's awful (as I'm sure all of you know, considering you're here and reading this). I'm trying to take care of my three children ages 3 and under during the day (two are twins) and it's so stressful to hear crying while stuck in the bathroom. I've had to, literally, run home while out with them walking or at the park, I've had accidents (bloody mucous) ... and right now there's just so much blood and I feel like anytime I eat anything I immediately have to go.

Has anyone out there had success with the Hydrocortisone enemas? I'm not sure what's next if these don't help. Also, is it odd that I haven't lost weight with this? I was worried something else was wrong for a long time just because of that. Some days I go to the bathroom 20+/day and yet I've gained weight throughout this. Not much and some of that is probably because I'm no longer pumping breast milk for my twins but still, I find it odd.

Thanks. It's nice to know I'm not alone.
Posted 10/14/2011 4:30 AM (GMT 0)
Hey Kymom, Welcome to HealingWell.

I totally relate to everything you said. People don't understand how frustrating it is when your life revolves around the toilet and trust me, I've had periods of time where that was the case. I remember when I was first diagnosed, I was dealing with proctitis. My GI assured me it is rare for it to turn into UC but unfortunately mine did. Proctitis alone can be debilitating. Do you have cramping at all? Frequency?

I think your GI is doing a good job of trying to get you into remission using the rectal meds and Colazal. I understand it can be very hard to retain an enema when you're flared up. Is the hydrocortisone enema a foam enema? Those are easier to retain but probably not quite as effective. Another useful combo may be foam at night and Canasa suppository in the morning. I admit, I have had trouble retaining even suppositories when I was flared up badly. Has your GI suggested trying Asacol or Apriso instead of Colazal? I didn't have much luck with Colazal and did well on Asacol. There is a bit of trial and error involved in this illness. Not everyone responds well to the same treatments. Are you taking probiotics? Have you altered your diet? Most of us find that certain foods aggrevate symptoms when we are flaring.

I am sorry you're feeling bad. I am sure things will begin to improve soon. I think it's important to remember that not everything will work for everyone and to try to be open minded to trying different options. You will find a solution. If you don't improve with 5ASAs and rectals, the GI may mention oral prednisone. That usually nips this in the bud but it's a very bad drug that can have awful side effects... If you are on and off it quickly, it can be a good option - no one intends on being on it for a long time...
Posted 10/14/2011 5:06 AM (GMT 0)
Thanks so much for the response, notsosicklygirl. To answer your questions, I do have light cramping when going and when I have a bad day (like today) I probably go 20+ times. But since early spring it's rare for me to go less than five times a day. I'd say the norm is five to six on a good day, 10-12 normally and just in and out on really bad days.

The hydrocortisone enema is not a foam one. I'm usually good at retaining them overnight so hopefully these will be the same. My GI doctor has not suggested Asacol or Apriso—I will bring them up if this new enema doesn't work.

I was taking probiotics when I kept getting positive c-diff results but quit once the tests started coming back negative. I take it you think they're helpful with proctitis as well? They can't hurt. I'll start them again tomorrow.

It's interesting you mention diet. My GI doctor said diet has no affect on it and while I've had this supported in my own research every patient I've read about online has said diet does affect it. And my diet is a colon nightmare. I LOVE coffee and drink a lot of it. Love popcorn. Love fresh fruits. Love dairy (milk, cheese, everything). But I'm willing to try anything so perhaps it's something I should look into—at the very least cut back on coffee and dairy.

I Googled oral prednisone. Oh my, I hope I don't have to take that!

I'm so sorry yours resulted in UC. I noticed in your signature you mentioned extreme exhaustion. Is that from UC or something else? I've actually had my thyroid tested and blood work done (for anemia) as I, too, am battling extreme exhaustion. It's akin to when I was pregnant my first trimester (and the reason for all the coffee!). My GI doctor said it's likely a result of my body trying to fight off the inflammation—it's putting all its energy in that, leaving me little. I can't imagine cutting out caffeine as a result, but I'm thinking I may need to ...

Thanks again.
Posted 10/14/2011 12:52 PM (GMT 0)
Hi Kymmom,
I'm sorry you have been going throught this. My UC is mostly in my rectum too and I think you will need to play around w/ the rectal meds to see what combo works best. I also agree w/ nssg that a different oral asa may be better. I take Lialda but many find success w/ asacol or apriso too. Personally I like the enema at night and supp. during the day routine. The enema is more medicine, covers more ground (so to speak .lol) and can do it's thing at night. The suppository you can put in and go so good for daytime. I also think it really concentrated in the rectum so is a big help there. I might recommend the mesalamine enema at night and a steroid suppository such as anucort during the day. The steroid supp is a very low dose and won't really cause side effects like oral pred. It is also less steroid than the steroid enema. You can also try the Canasa supp during the day which is also a asa which is very safe.

In addition, fiber helps (although must start slow and there are some people who don't like to take it during a flare) but it does help alot of people. I take Metamucil (remember start slow) Finally probiotics are good too especially w/ the C-diff scene. I hope you feel better soon and pls keep us posted.
Your Dr. is off to a good start though with his willingness to prescribe the rectal meds. I think for low down UC/proctitis they are your best friend.
Posted 10/14/2011 1:16 PM (GMT 0)
I can relate to you also.. I found that Rowasa helped, but it was every night for 3 weeks. I have never been taken off the oral meds, Rowasa is always along with my Asacol. I'll do anything not to take Prednisone.

I probably would not eat popcorn either, it tears me apart. I found that on early in this disease.
Posted 10/14/2011 3:56 PM (GMT 0)
kymom, I don't know why I am so tired all the time. I am in remission now and I still feel a bit exhausted. Honestly, one thing that has helped my exhaustion is my antidepressant. I am still tired but a little more energetic.

My GI says diet doesn't effect colitis but in my opinion, eating certain foods makes me feel worse. I prefer to eat less and smaller meals when I am flaring. I avoid caffeine and dairy (I love both too) and I try not to eat proinflammatory foods like fried food. I don't think it helps my UC but I do think it is easier for me (&less time on the toilet) if I eat soups and easily digestable foods.

I hope you're feeling a bit better today.

Definitely don't give up on the mesalamine medications if Colazal doesn't work for you, try the others. If you need to, get foam enemas and Canasa suppositories :)
Posted 10/14/2011 5:13 PM (GMT 0)

Hey I had Proctitis for 3 years and was unable to get it under control and ended up being one of the few people to have surgery for it.

Try not to stress too much (although I know that is easier said than done!)...there are many more things for you to try and as far as I'm aware the majority of people are able to get their Proctitis under control with the right meds that work for them, apart from the odd flare up of course. The hydrocortisone enemas did not do much for me but I know that they have worked for many people. You may need to try a mix of stronger oral and rectal meds - tackle the problem from both ends! There are also steroids and immunosuppressants further down the line which have a high success rate in alleviating symptoms. :-)

Posted 10/14/2011 7:27 PM (GMT 0)
For those battling the extreme exhaustion. Please get on a B-vitamin complex. This disease causes us to not absorb nutrients properly, even while in remission. A B12 supplement makes a world of difference! But, a B-vitamin complex is even better. Also to the the OP, I have battled weight gain with this disease. I think its just my body's way of dealing with it- storing up stuff. It makes it very hard to loose because my body thinks it really needs it, like when you're pregnant. At least that is my theory!
Posted 10/15/2011 1:24 AM (GMT 0)
I have taken the cortizone enemas and they made me gain weight. Be careful with steroids. Good luck
Posted 10/17/2011 2:53 AM (GMT 0)
Thank you so much for all the replies! It's not something I like to talk about with a lot of people and it's nice to know that I'm not alone.

I plan to call my GI doctor in the morning. This weekend has been miserable and currently I'm in so much pain it's difficult to sit, lie down ... do anything, really. I am taking probiotics and an antidepressant (trying to handle this and three kids while feeling stuck in the house all summer wasn't easy). I've also been working really hard on my diet—not sure if it will help but I imagine it can't hurt.

I just started the hydrocortisone enema recently so I'm still baffled by the weight gain. Take this weekend for example: I've been going 20+ times/day and eating less (because every time I eat I have to go) and yet I weigh a good 15 pounds more than I did several weeks ago. Argh. If I HAVE to experience any of these symptoms I'd like at least one of them to be weight loss! :)

But again, thank you. I've been dealing with this since early spring (and now am in the midst of my worst flare-up to date) and can't imagine those of you who have been battling this for years.

ps: I've only had a colonoscopy (well, an an upper GI x-ray series) in terms of physical exams. If I go in to see my GI doctor, should I prepare myself for an exam in her office? And because I'm in so much pain, will the exam be painful?
Posted 10/17/2011 6:43 PM (GMT 0)
kymomofthree

Have you tried using the Hydrocortisone enemas 2 times a day??
That seemed to do the trick for my hubby and you need a good 3-4 weeks doing it 2 times a day.Then wean to nightly
for another month.

It is not easy..he sets the alarm in the morning for 4:15am and then gets up at 5:20 for work- but it is helping.

Good luck!
Posted 10/19/2011 12:46 AM (GMT 0)
No, I haven't! I've tried mesalamine enemas 2x a day but I wasn't able to hold the day one. I'll ask my doctor about it. May I ask, does he stay in bed for an hour with them, then? I thought it was only a half hour ... (I want to be sure I'm getting the best use out of them!). Right now I'm being tested for c-diff again ... now that I'm completely off the Vanco my GI doctor fears its back, based on my symptoms. Ugh. I'll know more Thursday.
✚ New Topic ✚ Reply