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Desperate : debilitating symptoms

Mon, December 30, 2019 2:02 PM

I am a 20 years old woman and have been struggling lately. I’m currently in what I’d consider my 4th flare up. The first one happened in summer 2018 and lasted 10 days. Went to the clinic, they told me to get a blood and feces test, didn’t do the feces ones because I felt better. Then one year later, approximately at the same time, I had another flare which lasted for 3 weeks.  Went to the doctor again, did another blood test, everything seemed normal besides my white blood cells which were a little high. Had another flare from mid-august to beginning of November. My doctor said it could be IBS and ordered a colonoscopy which I passed on December 19th. I was at that time, symptom free and I was told that everything seems normal. But right after my colonoscopy the symptoms came back. I have  A LOT of them and it is really debilitating. I have diarrhea (6-8 times a day at most), when it is not liquid, my feces float, I wipe a lot of mucus and sometimes blood. I have nausea, that get more intense at every new flare and even I spent 5 hours hunched over the toilet on the 24th (merry Christmas !!). I have huge cramps, bloating, I can barely eat anything, have lost almost 10 pounds in the last 10 days. My stomach is very tender, I have huge headache, my eyes are very sensitive to light, I feel very tired and weak, I am often dizzy and unstable. I am unable to consume dairy during a flare even tho I am not intolerant when I am without symptoms. My stomach does a lot of noise and I even feel pain during sex (which I do not feel when symptom free). I am desperate for answers, I don’t know what to do, every flare is worst than the previous and lasts longer, I don’t know if this is all in my head and I am becoming crazy, no one seems to understand or believe me. Can it really just be IBS? Am I making this all up in my head? I really don’t know what to think..

FPO sarahjcity
Joined Dec 30, 2019

Fri, May 22, 2020 1:33 PM

Reply posted for sharonfl.

Smoking helps control symptoms although most providers don't share that.  I got UC after quitting smoking as well. Stil not smoking but on Lialda, which has worked well for me.

FPO sharonfl
Joined May 22, 2020

Sat, May 02, 2020 4:04 PM

Reply posted for sarahjcity.

Hi Sarah! I just recently came across your post and just wanted to offer some advice from my own experience. I'm 22 and have been diagnosed with ulcerative colitis nearly 4 years ago. I do notice quite often that after many of my colonoscopies (or even sigmoidoscopies) that I seem to flare up right after, even though I'm perfectly fine before the procedure. For me, I would always get tested afterwards for Clostridium difficile (aka. C. difficile or C. diff) afterwards because it's usually the culprit. (It's a test done with a stool sample collected in a sterile cup that you can get from your doctor.) C. diff is a gram positive bacteria that can be transmitted through the scopes as the spores produced by the bacteria in order to reproduce are notoriously difficult to kill and can even exist in your regular, everyday surroundings. So the way my doctor explained it to me was that when your colon is unwell, it makes it easier for the "bad" bacteria (like C. diff) to attach to your gut and steal nutrients from the "good" bacteria. When you are positive for C. diff, it would present very similarly to the symptoms you experience during a flare - namely, urgency, cramps, diarrhea, and even blood in your stool. In addition, I've had enough experiences with C. diff to even recognize that before my symptoms start presenting, I would notice that my stomach would make a lot of noises - almost like the growling sounds your stomach makes when it's hungry - except it would be coming from my gut and I could even feel a sensation like a large bubble of gas moving through my colon. Later on, my GI doctor explained to me that that would be what they term as "dysbiosis", which is what happens when the balance of bateria in your gut is thrown off as the "bad" bacteria start to proliferate. To me, it sounds like the sounds in your stomach could maybe be a result of that?

But don't worry, the bacteria is definitely treatable. In the past, I would start out with a course of vancomycin, which used to work for me, but it's not as effective as what I use now, which is Dificid. Dificid is a drug that specifically targets C. diff, but some doctors would reserve it as a treatment in case vancomycin doesn't work cause you don't want to build up antibiotic resistance to Dificid, especially if Dificid is the last resort drug that will almost always kill off the C. diff. If those don't work, there's also other options like Zinplava, which is IV infusion drug with antibodies designed to get rid of the toxins produced by C.diff (which C. diff produces two different toxins - a toxin A and toxin B - the strains of C.diff that produce toxin B often result in worse symptoms). Some theorize that it's actually the toxins produced by the C. diff that make you sick, which is why Zinplava is given as a way to get those toxins out of your body. But, do bear in mind that it's sometimes not covered by insurance (mine didn't cover it so it would have been around $2000) and it's also not 100% effective (I believe the success rate is around 80% or so, but don't quote me on that). The last resort is fecal matter transplant (FMT), which is used for patients with recurrent C. diff (like me - I've had about 4 infections and have since just tested positive, even though I'm not exhibiting symptoms, which then brings up the potential of me just being a carrier for the C. diff, which definitely makes it more difficult to decide whether or not any future symptoms are coming from the C. diff or my disease. But from how I understand it, it seems like the two are intertwi

FPO kaitlinh
Joined May 2, 2020

Thu, April 09, 2020 8:57 PM

Reply posted for sarahjcity.

Hi I'm 42/male diagnosed with colitis after months of mild bleeding and constipation. 

I smoked marlboro lights for 20 years. All my symptoms began 9 months after quitting. Colonoscopy 11/15/19. Put on 800mg mesalamine 6 pills a day. 

For 2 months it was great, large healthy normal bowel movements, honestly I've never pooped so good in my life! Then on 1/13/20 I had my first "flare". Had no idea what a flare was but I figured out it sucks really quickly. Endless blood, clear liquid and despair. 

A family friend is a doctor and said off the record, smoke 5 cigarettes a day. I did. 3 days later all symptoms gone. I hate the smell, taste and cost so I needed another option. 

I began vaping 24mg 3 months ago now and all symptoms have been gone. One would think it's insane but the nicotine works. It just works. 

Just throwing that out there for anyone at their wits end. It works. 

FPO Corsa
Joined Apr 9, 2020

Tue, January 28, 2020 10:18 PM

Reply posted for sarahjcity.

I have ulcerative colitis and your symptoms sound like the symptoms I have when I have a flare up.  It took 5 years for doctors to correctly diagnose me.  I went through a couple colonoscopies, a flex sig, an upper GI and blood tests before I was correctly diagnosed with ulcerative colitis.  Are you on any meds like Lialda, Apriso, Asacol, Delzicol?  

FPO lala510
Joined Jan 28, 2020

Wed, January 01, 2020 10:05 AM

Reply posted for sarahjcity.

Everyone experiences colitis differently but I had a lot of the symptoms you have.  I vomited up so many meals, sometimes I barfed on an empty stomach. I passed so much blood I needed transfusions. You might look into the biologics available today. Some people have good results. Not me though.

FPO charbs
Joined Oct 31, 2016

Mon, December 30, 2019 8:25 PM

Reply posted for sarahjcity.

I am so sorry, I was just recently diagnosed as well. Keep going to your doctor and if you have severe dehydration it can make things worse.

FPO Mrs Jason
Joined Dec 30, 2019

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