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Ulcerative Colitis
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Posted 6/27/2018 11:17 PM (GMT 0)
Hi All,

I've been lurking here for months, more and more since I've gotten sick. You guys are really great and have taught me a lot. I wanted to tell my story up to where I am and see what you all think, warning! Its long and probably graphic.

So around Thanksgiving I ended up with Strep, I catch tonsil related things a lot, I have big gross tonsils. I was given Clindamycin (you probably know where this is going). I really hated the way it made me feel, heartburn weird side pains etc. Well on Christmas Eve Eve I realized I had a big knot in my mouth and thought it was an abscess, I freaked out a bit because all the dentists were going to be closed for weeks (I live in a small town in Alabama). I go to the hospital and for some reason an EMT sees me instead of a doctor. Okay, well he sends a nurse with a little pill cup with a TRIPLE DOSE of Clindamycin. I told her I didnt think I should take it as it had bothered me before. She assured me itd be okay, just take some nausea meds. Getting home from the hospital I felt like I was in labor my back hurt so bad. I took it for a few more days and threw in the towel, the first time I've ever stopped an antibiotic early. 2 days later I was having loose neon yellow stools and my lower right side was killing me.

I went to the hospital again and was told it sounded like “a touch of colitis”. No help was given. I don't have insurance so I started paying out of pocket to see my family doc. Concerned for my gallbladder I has an ultrasound on all organs that came back fine. I had a stool sample for c.diff and tested negative. At first with this I had abdominal tenderness all the time, to the point where when I had the ultrasound it stayed tender where she'd pressed in, that's gone now. One night a few months in (this has been 5 months all told now) I had a bad flare, well this was the 4th day of a bad flare with green diarrhea. It ended in a lot of bright red blood with clots in it. I go back to the hospital they say internal hemorrhoids. I go home, and go back maybe ten hours later because I'm still bleeding. They give me a shot of bentyl, an IV of protonix and I get a catscan. Catscan comes back negative for anything at all. I couldnt believe I wasnt even showing inflammation on the heels of this excruciating flare. Well my doctor was happy with all the tests and thinks it's just IBS. So for a while I'm happy but flares keep happening even though Im currently taking bentyl, protonix and zofran as needed. I just started seeing a GI and I have a colonoscopy scheduled in two weeks. Ive now also got prolapsed hemorrhoids that go back in but will bulge out if my stools burn too much. There are FOUR of them and sometimes they look purple although they actually arent painful they look scary. I've lost 60 pounds, but I think some of that is from taking up smoking again last summer (awful, I know I know). GI is concerned about the weight loss and because my dad has UC. Does this sound like UC to you all? Celiac test also came back negative. I just cant believe this could be as simple as IBS.

Sorry this was so long! Any advice is appreciated.
Posted 6/27/2018 11:40 PM (GMT 0)
I am sorry you're dealing with all these symptoms and having difficulty getting a straight answer. Unfortunately, getting diagnosed is a bit of a process and it sounds like you're going to have to be patient until after your scope.

With what you've described, it's possible it's UC, but it's also possible it's not. You should certainly repeat the stool tests, and don't give up hope, you will find answers.

What is strange about your description is, it sounds like the symptoms come and go? People with UC generally have more relentless symptoms. They can be better or worse, but when we are flaring, it can go on for weeks, months, or years. You say you've had multiple flares, which makes it sound like you've had periods without symptoms, or without significant symptoms? then you've had the symptoms recur within short time-frames? Did you have a good day here and there where you ate light, and things were calm, or were you symptom free for a period, and then symptoms came back with a vengeance?

Regardless, I feel like with UC, mine at least, it was on or off, and the "on" lasted quite a while - basically until I found a medication that managed it.

Have you tried dietary changes or probiotics?

With a family history, you are at an increased risk, and the weight loss is definitely something that warrants exploration. Are you going often? 60 pounds is a lot to lose unless you're severely flaring, not the type of flare that's here today, gone tomorrow.

Good luck with your scope. Please let me know how it goes and what you find out.
Posted 6/27/2018 11:55 PM (GMT 0)
Thanks so much for responding. It's hard to explain, my stools are never really "normal" even at their best they look as if they're connected with mucus or something. And they are often yellow, orangey, green, dark brown(not black I don't believe). If I eat nothing but meat, crackers very low fiber food I can go for quite a while with minor symptoms. That is to say I'll almost be constipated and go only every three days or so. But if I am flaring up, I can go 10 times a day. For me it feels connected to my diet, I'll have a good few weeks and try a new food only to have agonizing bright yellow stools for days. Then I eat starch, starch, starch and I slowly get better. I have probiotics but I have to be doing really well to take them or they give me diarhea. My GI was baffled about the times where I am well too, he thinks its possible I have mild c.diff, I was given Flagyl months ago and my stools did firm up during the course of treatment. Thank you again and I will definitely continue to update after the scope.
Posted 6/28/2018 2:08 PM (GMT 0)
Welcome to the forum but sorry you suffer from bowel issues as we do. "A touch of colitis" likely means infectious-colitis and not chronic ulcerative-colitis (similar sounding but very different in prognosis). A colononscopy will say for sure. Before my diagnosis, I had toilet water that was completely bright red blood after each bm, and that is the most common reason people initially seek out a UC diagnosis (blood in toilet water or on toilet paper when wiping). Blood is a good reason to investigate Inflammatory Bowel Disease (IBD) and an Ulcerative Colitis (UC) in a patient. Without blood, it is likely something else but an IBD/UC: could be an Irritable Bowel Syndrome (IBS) or some sort of infection/pathogenic cause. You do not mention blood, so I am doubtful you have an UC and that's a good thing (as an infectious-colitis can be cleared up with a single course of meds and is not an issue going forward). UC also involves urgency in bowel movements and frequent bms, like run to poop, and then run to poop 15-minutes after the 1st one.
Posted 6/28/2018 4:13 PM (GMT 0)
Hi iPoop, thanks for responding. I definitely have the urgency and very painful bowel movements. Once in a while I can get my stomach under control but usually its a lot of running to the bathroom in tears. I have had blood a few times, as mentioned in my original post I went to the hospital for one of the bleeding episodes but catscan was clear. I had a round of flagyl months ago and it did seem to help, but only while I was on it. I was tested for c.diff and came back clear. I know I have to wait and see but it's starting to feel like there are no answers to be had. I appreciate every bit of insight to be had here. I should maybe note too that my dad told me he was diagnosed with ulcerative colitis and his main symptom was mucus, and lord knows I have that. But then my dad has a bit of memory loss at his age and I'm not sure if he's remembering everything correctly.
Posted 6/28/2018 4:34 PM (GMT 0)
Mucus and urgency can be entirely from an IBS. IBS is by definition absent inflammation. IBD/UC has inflammation. A family history makes it a bit more likely to be an UC.

if the colonoscopy has obvious, storybook UC signs then they'll likely tell you right after the scope. If there's any ambiguity you might have to wait for the biopsy results (a few days to a few weeks depending on facility).

For now, avoid NSAID pain relievers (aspirin, aleve, bayer, etc.) and stick to only tylenol and it's generic. NSAIDs worsen IBD/UC symptoms.

For now, eat low fiber, well cooked, non-spiced foods. I find soups, broths, chicken, and potato to sit well during flares. Pepper spices are non-digestible and burn/inflame from mouth to anus, not good for plausible IBD/UC patients. Fiber bulks stool and makes it more abrasive. Inflammation narrows the inside diameter of the intestine, leaves it raw and bleeding. Therefore fiber and inflammation should never meet. Alcohol can irritate and inflame the intestine. Caffeine can stimulate muscle movement in the intestine and increase urgency. Raw foods are harder to digest and often high in fiber.

Get a hot water bottle/heat retaining pad. It helps temporarily relieve lower abdominal aches from UC.
Posted 6/28/2018 5:24 PM (GMT 0)
Good you're seeing a GI and that a C-scope is scheduled soon.
Let us know the results.

q
Posted 6/29/2018 5:31 AM (GMT 0)
Clindamycin kicked off my current issues too, but at the time only one of the four doctors I saw thought it was UC. It cleared up on its own for two years, and now it's back. So it could be UC, even if you're not having the urgency (I don't), frequent BMs (I don't), or frequent blood (I don't).

I got tested for c-diff too, twice--both negative. It is possible to get antibiotic caused colitis that isn't c-diff, which is what they thought I had. At this point I'm thinking clindamycin should be taken off the market, or at least used for emergency situations only. It just seems to do more harm than good.

Anyway, colitis in all of its forms is a darn tricky disease. Everyone's different. My current GI doc a year ago would've bet money that I didn't have UC, and now he'll probably bet money that I do. Your colonoscopy should answer a lot of questions. Best of luck!
Posted 6/30/2018 4:26 AM (GMT 0)
Thank you everyone, I am trying to live as if I already have UC because it gets my stomach stable. Holo100, I've read a lot about Clindamycin since it well ruined my life and it seems to me the issue is that it's a last resort strong broad spectrum antibiotic that is used too freely. Great for things like MRSA, but considering I ended up having salivary gland issues and no infection at all it just decimated my stomach. I'm allergic to several antibiotics so I guess they thought they had no option but I could have easily had a z-pack or something for the strep at least. they gave my son clinda too the same time period i think they were on a kick.

See I am confused about the colitis that isnt c-diff or UC, wondering what exactly it is. Anyway I appreciate all the feedback thank you everyone. This has been a horribly lonely time in my life, I was the youngest person at the GI by a good 30 years, sometimes I feel like the only person my age dealing with this.
Posted 6/30/2018 8:27 AM (GMT 0)
I had acute colitis back in January that was possibly caused by a bout of horrendous stomach flu--it wasn't UC, because there was no blood--in fact, there wasn't much of anything, aside from terrible nausea and a lot of throwing up. One of the things my GI doctor and I are trying to figure out is what exactly that was, and if it triggered my present issues.

C-diff is the most notorious antibiotic-caused colitis, but I read somewhere that it actually only causes 30-40% of cases. The rest aren't as nasty or as tough to get rid of as c-diff, and a lot of people don't even know they have it. People will get bad diarrhea, stop the antibiotic, and it goes away on its own.

I think the GI tract is still something of a "final frontier" for doctors, and we're still trying to figure out exactly how our body works even now.
Posted 6/30/2018 5:53 PM (GMT 0)
I have to clear up a bit of newbie info sharing thats totally incorrect.

One can flare without bleeding. If one waits till that symptom, important clues of actual flaring will be reasoned away and denied. Treatment won't happen soon enough, and the tolerance level of symptoms will continue to rise.

Inflammation happens in increments.....like a sunburn, just because it is a teeny bit of pale pink, it doesn't mean one hasn't got a sunburn or isn't flaring.

Acute doesn't mean not flaring.......areas not yet flaring long enough to create structural changes doesnt mean it's not UC.

Please stop using the term flu for anything other than respiratory. Gastro bugs or invaders can be caused by virus, bacteria, fungus, parasites, toxins, etc, and isn't under the umbrella term of FLU. It is transferred hand to mouth, ingested......and bacterial and viral are spread via improper handwashing....those who give and receive.

Do more research, try not to base and reuse incorrect info just because of its common usage.

q
Posted 7/3/2018 2:10 AM (GMT 0)
Hi again everyone,

My scope is in a week now and I'm so nervous. Mainly I'm only nervous about the prep. I cant imagine inducing diarrhea when I spend all my time trying not to have it. Did any of you have issues with prep? My hemorrhoids are the worst I've ever seen, worried they're going to open up from going so much. Maybe I should post this in another thread? Sorry if so, new to how things work here.

-Rachel
Posted 7/3/2018 3:17 AM (GMT 0)
your not alone my colonoscopy is in 2 weeks im nervous about the prep as well i do my very best to not have diarrhea it always stresses me out when i do so its going to suck sad sorry to hear about your hemorrhoids is there a lot of bleeding?
Posted 7/3/2018 12:31 PM (GMT 0)
What prep have they given you to take? Preps are worse than the colonoscopy. You essentially drink some meh to bad tasting liquid (some preps are better then others), and sit on the toilet for a few hours straight, while you empty out. It's urgent so do not go more than arms-length from the toilet.
Posted 7/3/2018 12:35 PM (GMT 0)
Your story sounds in many ways like mine. I am diagnosed with UC and for me too it all begun strong antibiotics (I do not remember the name, but it was very strong). Like you, I get help from Flagyl and the stools are temporary firming up from this treatment.

Sadly the only way to diagnose it (as far as I know) is with the scope and taking samples from the intestine. You will have to wait for that to be sure.

To me it seems like UC is a "family name" for many variants of colitis, and what works for one often do not work for another. The most important diet change, for me, was to drop dairy.
Posted 7/5/2018 1:15 AM (GMT 0)
Borborygmi,

I've had a few bleeding episodes that I think were from hemorrhoids but honestly could have come from UC as I don't know what's going on yet. I do know my nausea is getting more frequent, and my blood pressure and heart rate have been very odd. Low sometimes, like 90 systolic 65 diastolic. And when I get sick my heart rate goes super high, like 150. I'm wondering if Protonix is causing this.

Ipoop,

I have Clenpiq? I might not have spelled that totally right. My fear is that it wont just make me poop watery but that it will send me into a super painful flare up. I'm also worried about staying hydrated because my BP gets really low sometimes. Getting close to the day to prep now so my fears are increasing .

-Rachel cry
Posted 7/12/2018 3:34 AM (GMT 0)
I thought I would update this thread as I have updated my second one. I do not have UC, or apparently, anything. My GI thinks that perhaps the clindamycin threw me off track and my continued bland diet is enabling me to be sick. My colon was aparrently perfect. I'm trying hard to just be happy about this but the diet thing seems strange to me as anytime I try to introduce a new food, I get very sick. Who knows, I know I feel very sick but I've tried everything.
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