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Ulcerative Colitis
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Posted 9/25/2019 11:01 AM (GMT -6)
I can't stop getting sick. Went into a flare after getting a bacterial infection in my colon and I have been in a flare for 5 weeks though was getting better little by little, then Monday I come down with a 102 fever. I think my immune system is shot. Any advice? I can't keep being sick!
Posted 9/25/2019 12:35 PM (GMT -6)
what meds are you on?
Posted 9/25/2019 12:40 PM (GMT -6)
Just Lialda. Upped it to 4 pills a day when I started into my flare. I was getting better and didn't have any enemas that weren't expired(haven't flared in almost 10 years). Have those now, so will be starting those tonight. Sigh. I forgot just how bad this exhaustion and urgent D feels. I can barely do anything. Thinking I should go on medical leave from my job, but I keep thinking I will get better.
Posted 9/25/2019 2:08 PM (GMT -6)
Is the bacterial infection gone? Was it treated with antibiotics?

Fever sounds like infection still present.
Posted 9/26/2019 11:53 AM (GMT -6)
it's a totally cliche advice - start taking cod liver oil. When I had a series of never ending infections last winter, I started taking cod liver oil and it really worked.
Posted 9/30/2019 4:47 PM (GMT -6)

ewafromwarsaw said...
it's a totally cliche advice - start taking cod liver oil. When I had a series of never ending infections last winter, I started taking cod liver oil and it really worked.

Cod liver oil is full of vitamin A, a little vit D, and omega-3s, so it might help. Checking to see if Jen has low levels of vitamin D might also help.
Posted 10/1/2019 5:37 PM (GMT -6)

DBwithUC said...
Fever sounds like infection still present.

Not necessarily. You can also have a fever because of a flare.
Posted 10/2/2019 1:09 PM (GMT -6)
Thanks everyone. I had more bloodwork and stool sample done on Saturday. Having the dreaded cscope tomorrow and already anxious about the prep. I finally started feeling a little bit better yesterday. I haven't had that much urgency, blood, etc. with this flare so it was really starting to worry me that it was something other than a flare and/or the bacteria infection hadn't really been resolved. I also am tired with flares but this was really bad. Like sleeping all day bad and couldn't do anything bad. I haven't had a flare in 10 years, so is this just age making the symptoms worse? Anyone else had UC for a long time and find that the flares are different now that you are older? It could also be that 10 years ago I didn't have the luxury to sleep all day. I had to push through at work no matter what to support my family and had two really little kids. Curious what happens over time with UC flares. Oh and for anyone that wanted to know about anti-anxiety pill for prep, but doc gave me one Xanax. Haven't taken it yet as I don't start my prep until 5:00, but you better believe I will be! Already feeling stressed out....
Posted 10/3/2019 1:16 PM (GMT -6)
How did your prep and scope go? I'm always exhausted in flares too but it's because I can never get any sleep due to severe pain and constant bathroom trips.
Posted 10/4/2019 11:45 AM (GMT -6)
The prep was not bad. I took an anti-nausea pill and the Xanax and this time my doc had me do a split prep. 32 oz in the evening and another 32 oz in the morning. I didn't go AT ALL at night and finally went in the morning after my morning one. After my scope my doc said "It wasn't a clean prep"...ummmm?? I did everything right. Drank all of it plus plenty of clear fluids. No idea what went wrong and I was too groggy to talk to her about it. I hope she was able to see everything she needed to. Frustrating to go through all that and not have a good scope. Still waiting on my results. I also had a horrible headache last night and woke up with it this morning. Thinking it was from the anthesia, but never had that before. I am just so thankful I am finally feeling better(I could literally feel my energy returning Wednesday afternoon). Good to hear I am not the only one that is exhausted, but mine isn't really from the pain. Wondering if anyone else's flares are getting harder to tolerate with age? Crazy thinking I have had UC for half my life now. When will they find a cure??????
Posted 10/4/2019 12:25 PM (GMT -6)
That sucks it wasn't a clean prep. I've never experienced that. I usually do the split prep -- half of the gallon the night before and the second half in the morning. Sucks about your headache. I hope flares don't get worse with age. Lol. I know, I can't believe I've had UC for 12 years now. Although it's also kind of hard for me to remember ever not having it.
Posted 10/7/2019 12:26 PM (GMT -6)
Hi Sara14!! I remember you!! Hope you are well and that you are back in remission. I saw in your footer you had recurring c diff. Any advice on how to kill it completely?

Well got my stool tests back and positive for C. Diff After 7 weeks of illness can't believe this wasn't caught sooner. Don't just assume it is a UC flare! I have learned my lesson. I kept pushing my UC doc but should have pushed her harder sooner to run the tests!
Posted 10/7/2019 12:38 PM (GMT -6)
WOW, after all that time.....THAT'S the conclusion??? This isn't your fault, and how hard are stool tests for the doctor??

What Is your doc's great strategy for you now?

Hugs,
q
Posted 10/7/2019 2:06 PM (GMT -6)
Can you believe it? And she is a specialist for UC. It is so hard to get help in the bay area. Just too many people here. sigh. Just Vancomycin(2 weeks) and then Floraster. I told her how bad I had been feeling, all my symptoms, how long it had been going on, etc. I am pretty upset about the last 7 weeks.... I MUST find a decent primary care too. So hard here and I have really good insurance, still hard to find docs that help.
Posted 10/7/2019 3:58 PM (GMT -6)
Hope the vanco helps. Follow the protocol of hygeine regarding c.diff. it stays active in the bowel for a few weeks even after you feel well.

You might want to increase or add fibre supplements to help sweep the invaders out and to help increase food for the good bacteria.

Keep us updated.

Are you on the hunt for a GP? Don't ask your GI for a referral..🤔
q
Posted 10/8/2019 1:39 PM (GMT -6)
Thanks Heather. Yes, I need a new GP and I think I am going to see if I can switch GIs. I heard Stanford has a good one that specializes in UC. Issue is there are so few in the bay area so they are so busy it takes months to see them. I feel like we have socialized medicine.

Thanks for the advice on c diff. It is really hard to eat at all so I am hoping the anti-biotics kick in so it doesn't hurt when I eat. The pharmacist did say I was going to get constipated. Should I take a fiber pill? Obviously never ever taken one of those...haha.
Posted 10/8/2019 2:21 PM (GMT -6)
Jen,
I am going through a split prep right now this minute.
I have one Xanax on hand and wonder when you took yours. Before the during the evening prep?
I was going to ask about anti-nausea but wonder if that wouldn't slow down the whole gut.

You ask if age makes things worse? Possibly. But, according to iPoop, as time goes by the disease can advance.
Posted 10/8/2019 2:38 PM (GMT -6)
I've heard the Bay area is a nightmare for finding quality care because it is just so overpopulated. The only person I know of there who manages his UC well is very wealthy, so he goes to top tier clinics. He can usually get an appointment within a day. It seems like for everyone else, the doctors are highly under-resourced so they have huge case loads to manage. Not a good recipe if you need specialized care.

I second the cod liver oil. It's not just vitamin A in it, it's active form: retinol. You can only get it from animals. CLO also has the natural ratio of vitamin D to vitamin A that we should all be taking, which is 1:10. In the winter time we actually need way more reintol than we do vitamin D, which is something that modern research is only just beginning to clue into.

High dose retinol in the form of eating bovine liver daily was one of the things that got me into remission. Retinol really regulates a dysfunctional immune system and simply taking vitamin A won't cut it.

For every 1000 IU of vitamin D you take, you need 10x the retinol to utilize the vitamin D. Most people are not getting this much retinol in their diets, which is why vitamin D can have some gnarly effects on people.

about 15% of the population can't convert vitamin A to reintol in their livers because they lack the genetic sequence. These people *must* consume animal sources or they will be screwed.
Posted 10/9/2019 12:18 PM (GMT -6)
Natural curl I am SO sorry I didn't see your post and I really hope your prep went well. I took my Xanax an hour before I started my prep to make sure I didn't throw it up. It worked like a charm and after I finished my hour of prep it put me to sleep for an hour and woke up happy. smile I don't know how you take all of that without anti-nausea. You are amazing! I do plug my nose and chug clear liquids right after without unplugging my nose so I can't taste it but the gritty feeling makes me want to gag. I can only say these things to you guys because I know you are all get it! Love this group.
Posted 10/9/2019 12:23 PM (GMT -6)
Mark thanks for your comments about the bay area. Most people have plenty of money here...does your friend bribe his doctor? I have no idea how to make things better. Just put a call into Stanford as I am DONE with UCSF. There is no way she shouldn't have caught my c-diff weeks ago. Everything online says if you have IBD you are way more susceptible to c-diff. Why have I never been told this? I have had IBD for 20+ years and no doctor has mentioned it? I have been with her for 15+ years. I am lucky as my UC is controlled by medication but that doesn't mean that when I am sick I don't need help. UGH!

Thx for the advice on cod liver oil. I do not think I can eat liver(YUCK!), but I will get Vitamin D and cod liver oil. Any brand you recommend? I want to boost up my immune system for winter any way. I am the worst at taking vitamins when I am healthy. No excuse... I am going to change my ways!
Posted 10/9/2019 12:46 PM (GMT -6)

*Jen* said...
Hi Sara14!! I remember you!! Hope you are well and that you are back in remission. I saw in your footer you had recurring c diff. Any advice on how to kill it completely?

Well got my stool tests back and positive for C. Diff After 7 weeks of illness can't believe this wasn't caught sooner. Don't just assume it is a UC flare! I have learned my lesson. I kept pushing my UC doc but should have pushed her harder sooner to run the tests!

Hi! I had reoccurring campylobacter (a food poisoning bacteria) in fall of 2016. That lasted 3 months. It would respond to antibiotics and then come back once off the antibiotics. All those antibiotics and a hospital stay led me to get c diff. I didn't have reoccurring c diff., thank god. It either went away after one or two courses of vanco (I can't remember, but I feel like I may have had to take the Vanco a little longer than 2 weeks). I'm glad you're getting a new GI doctor. If it happens again, now you'll know for next time to request stool tests. That should be your doctor's job, but unfortunately, we can't always rely on medical professionals to be competent or do their jobs.

My only advice is to wash your hands often and thoroughly (after using the bathroom and before eating anything or preparing food), try not to touch your hands to your face/mouth often, and clean every surface you may have touched with bleach. C diff. can live on surfaces for up to 6 months! I was so relieved when I hit the 6 month mark and had not become reinfected. Lol.

And yes, I started Remicade a few months ago and that seems to have put me in remission. Thank you! And good luck!
Posted 10/9/2019 12:50 PM (GMT -6)

*Jen* said...
Thanks Heather. Yes, I need a new GP and I think I am going to see if I can switch GIs. I heard Stanford has a good one that specializes in UC. Issue is there are so few in the bay area so they are so busy it takes months to see them. I feel like we have socialized medicine.

Thanks for the advice on c diff. It is really hard to eat at all so I am hoping the anti-biotics kick in so it doesn't hurt when I eat. The pharmacist did say I was going to get constipated. Should I take a fiber pill? Obviously never ever taken one of those...haha.

I've never heard of vanco. making anyone constipated and I did a ton of obsessive research about c diff. when I had it. My pharmacist, doctor, nor anyone at the hospital told me this either.
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