Should I get a second opinion?

Hi everyone,

This is my first post but I have been trolling around these boards for a couple of months now scooping up information and reading stories. I am a 26 year old female in post-graduate school. I have always been very healthy, eat a balanced diet, and exercise daily.

On July 26 of this year, I randomly experienced several episodes of aggressive watery diarrhea, completely out of the blue. I felt completely fine before and after, and brushed it off as "I must have eaten something my stomach didn't like." In hindsight, I hadn't eaten anything in the last 18 hours or so before that. I had also been dealing with a cold and a lot of excess mucous production and salivating for a few days before that, so I thought maybe it was my stomach over-reacting to the excess mucous and saliva. Over the course of the next three weeks, I had bouts of diarrhea 8-10 times a day followed by periods of constipation for a few days.

I went to see my doctor where they sent me home with an at-home stool collection kit and a Lomotil prescription. I turned in the stool sample the next day and it came back negative. I took the lomotil once a day for four days and it kept me stopped up. On the fifth day, I didn't take the Lomotil and diarrhea started back. I went back to my doctor- by this point it has been 4 weeks of diarrhea and I had lost 8 pounds, putting me down to 103 lbs at 5'7". I was feeling very weak and dehydrated. This time my doctor sent me home with a Rx for Cipro 2xd for 7 days. I didn't notice any improvement on the cipro, so my doctor sent me to GI.

I got a colonoscopy a few days later, which showed inflammation and white plaques in the last 6 inches of my colon- no ulceration, no blood, no polyps, no inflammation past the most rectal 6 inches. Biopsies all came back normal. Stool samples during the colonoscopy showed H Pylori infection. Doc sent me home with a prescription for Flagyl (metronidazole) 3xday for 10 days. After just a couple of doses of the flagyl, I was feeling so much better. After 3 days, my bowel movements were regular and normal, firm and normal in color/texture, no more pain in my abdomen or bowels. I finished the flagyl and four days later diarrhea started up again. I thought it was just a relapse or some stubborn residual bacteria, and expected my doctor to just try the flagyl again. When I went to see him, he says he no longer thinks it is infectious colitis and is sounding more like Ulcerative Colitis or Crohn's. He says he does not think the H Pylori is causing any of my symptoms and is not planning to treat the H Pylori until a later date. He took some bloodwork to test for genetic markers of Crohn's or UC and sent me home with Prednisone 30mg/day for a week then on to tapering. He said if I am not feeling better within a week to come back.

I have been on the prednisone for 3 days now and don't feel any real difference. The diarrhea has slowed down but my stool is still very mucous-y, soft. Sometimes my bowel movements are only mucous with no stool. I still feel this urgency to go all the time and my rectum just feels very inflamed and painful. I have not gotten results back yet from bloodwork, but I have absolutely no family history of any inflammatory bowel diseases and I have never had any symptoms in the past. I guess my question is, is this presentation characteristic for the initial signs and symptoms for those of you who have UC or Crohn's, or should I get a second opinion from another GI or push my doctor to try the antibiotics again?

My doctor told my husband to tell me to take the flagyl for 10 days, and the note they mailed to me a week later said ten days, but the prescription was written for 14 days and the post op instructions said 14 days. I took it for 10 because that's what my doctor said, but now I am wondering if I had taken it for 14 days, would it have been all gone by now? I was very nauseous while taking the flagyl so I was eager to get off of it since I was feeling better, but I would gladly do it all over again if I knew it would heal me. I've also read that blood in the stool is almost always a given in these diseases, and I've never had any blood in my stool at all. I also thought you could see patterns of UC or Crohn's in the tissue samples/histology, and my doc said my biopsies were all clear and normal.

It's no doubt that I am in a bit of a state of denial. I don't want to believe that I have just been potentially diagnosed with a chronic, life-altering disease that I will have to deal with for the rest of my life. I am young, newly married, and will want to start trying to have children soon, as well as begin my career I went to college for 8 years to have. But, for the last two months, all I can think about is how my stomach feels and how close I am to a restroom. I don't want to go anywhere or talk to anyone. I have lost more weight and have had to miss so much at school and in my personal life. I really want my doctor to do everything possible to rule out infectious colitis before I'm put on medication for basically the rest of my life.

I appreciate any and all input, and appreciate all the information and advice already shared on these boards.

Thank you!

Post Edited (SayItAintSo) : 9/21/2017 7:57:59 AM (GMT-6)

Do you have a lot of gas?

I'd also get tested for SIBO, Flagyl can mask the symptoms of it but will not treat it. There are better antibiotics for SIBO. It will mimic the symptoms of an IBD but it is not an IBD.

Are you taking probiotics? You should take them any time you are on antibiotics and a week or so afterwards. Culturelle & Florastor are some of the better OTC probiotics.

It doesn't sound like you've received a diagnosis, but it sounds like you've had quite a bit of testing, and nothing concrete has been found. If your condition doesn't respond to prednisone that would be more of an indication of something infectious over something inflammatory in my opinion. At the same time, it sounds like maybe you've had improvement with pred, but you're not 100%, and hat's normal for IBD. Steroids don't make you better overnight, or even in a week, it takes time. What dose of prednisone are you on? If you're better in a week or so, then they will likely want to put you on IBD meds, which hopefully work for the long term. It could be as simple as taking a few Lialda a day and being 100% forever. No biggie. It could go the other way though, you get on one thing, and eventually stop responding, then get on something else, then stop responding... before you know it, you're entire life is consumed with trying to find anything that will stop the urgency, D, blood, doctors appointments. Trying everything and anything... It puts things in perspective for sure. I am thankful I never wanted kids. I would be scared to pass along the IBD. Life is hard enough... it's definitely a career killer for some. It was for me. For people with mild UC, it doesn't impact career so much.

I think I would get another opinion if I wasn't getting better with the current plan. A 2nd opinion can never hurt, but it does take time to get a diagnosis and figure out what is going on, so to be fair, I don't think anything is really abnormal about what's been done so far. You will probably need a repeat scope at some point to see if there's evidence of IBD, but don't do it while you're feeling 100% or it will likely find nothing.

If she's going to the bathroom that much for that long I could imagine the rectum being inflamed from that and not an IBD.

Does this sound like an IBD? No. Permanent architectural changes to your cells are needed to be found through a biopsy to give you IBD. You said no inflammation was seen either through a scope.

Do you pass any blood through a bowel movement or see blood on your toilet paper when you wipe? Blood is often the biggest reason we seek out an ulcerative colitis diagnosis.

In your case, I'd guess an infection or IBS. IBS lacks inflammation and lacks permanent architectual changes. Not responding to prednisone is characteristic of an infection, or that there is no inflammation as is the case in an IBS case.

You have every right to seekout a second opinion, just expect the new doctor to rerun many of the tests you've already done: another colonoscopy, more stool tests, etc. Specialists iften take a month or more too book an appointment with, another consideration.

There's a Prometheus Labs diagnostic test that's fairly new and expensive you could look into (IBD sgi Diagnostic, IBcause™ Diagnostic Test)

/www.ibcause.com

/www.prometheuslabs.com/Products/Default.aspx

There was a paper on sinusitis and IBD. Details escape me but see how your google-fu works. :-D. Seems reasonable, given that your symptoms started after a cold.

Update:

I started on the steroids last Tuesday. I was supposed to be on 30mg of prednisone for one week, then taper to 20mg one week, then 10mg for 2 weeks, and so on. I was on 30mg Tuesday, Wednesday, Thursday, and Friday with my diarrhea getting progressively worse each day. My diarrhea was very green and had the worst odor.

Called the doctor and he said it sounds like steroids are not helping and wants to put me back on antibiotics. So on Saturday I started tapering the steroids down to 20mg and started Cipro 500mg2x/d + Flagyl 500mg 3xd for two weeks. No improvement saturday, sunday, or monday.

Monday (yesterday) afternoon I went to another GI doc for a second opinion. He said based on my biopsies and test results he saw no real concrete evidence of IBD, and thought my first round of flagyl should've wiped out any bacterial infection I may have had. He told me to stop the cipro, agreed with my original doc to stop the steroids. He said the only thing left to do is test my gallbladder for any biliary issues. Can't get me in to do that until next week.

Yesterday may have been the worst day of my life. I was doing moderately okay yesterday morning aside from the diarrhea, but as the day went on, I started having chest tightness/pain, heart palpitations, sweating, chills, extreme anxiety/panic. I could not lay still and was constantly crying uncontrollably. I do not know if this is from the prednisone building up in my system, or from starting to taper the prednisone, or something else. My doctor said both flagyl and prednisone are notorious for making you feel like a lunatic, so taking them both at the same time is a recipe for disaster. But, I had no choice. I took a Klonopin at 8:00 and finally got calmed down enough to sleep. I woke up today with extreme nausea, weakness, stomachache, and again the constant crying. I could barely function at all and had to have my husband pick me up from clinic and take me home.

Since this morning I've had three loose, watery bowel movements and they were red. This is the first time I've seen any read in my stool, however I drank a lot of red gatorade yesterday. I don't know if it is blood or just gatorade.

Basically at this point I have no idea what to do. I feel like a crazy person. I know most of my symptoms are just side effects of these awful drugs, but it seems like none of the drugs are working anyway if I am still having so much diarrhea.

I am now down to 99 pounds and have no appetite. I'm having to force whatever food I can down a little at a time. All day I have contemplated just going to the ER, but don't know what good it will do. My stool cultures and bloodwork won't be accurate since I've been taking antibiotics, and more than likely they would just want to refer me to my GI.

I want to thank you all again for your responses.

This is day 7/14 for me of Cipro/Flagyl and boy has it been Hell, to say the least. I have had absolutely ZERO appetite, SEVERE nausea, and vomited a couple of times. The only thing I can do is take some Zofran early in the morning, then take my meds an hour later with a piece of toast. I have barely been eating anything at all and have lost more weight (didn't think that was even possible at this point).

I've been having a really hard time mentally with these drugs- crazy mood swings, incessant uncontrollable crying, depression. As stated in my last post, my doctor told me to stop the prednisone. I had 30mg for 4 days, 20mg for two days, 10mg for two days, and then stopped. My last dose was Wednesday. Yesterday I felt a bit less anxious but today has just been one anxiety attack after another, coupled with heart palpitations all day long. My resting heart rate all day today has been in the 90s and mine is usually high 50s low 60s. Several times today I've felt like I could have a heart attack at any second. I've read that this can happen with prednisone withdrawal, but since I only took the prednisone for a week, could it still be this bad? If so, when can I expect these symptoms to go away? It's now been about 60 hours since my last dose.

SayOtAintSo, I was in a very similar situation as you two weeks ago. I am new to all this too. It sounds like you are severally dehydrated and malnourished. If this is the case, you need to consider going to the ER immediately! Regardless of what the underlying, unknown problem is. I am very concerned about you right now. I registered with the site specifically to reach out to you. If you are dehydrated, the only way you will get well is with IVs. I'm no expert, so decide for yourself, but your case sounds so similar to what I just went through.

about 4 weeks ago I started with the diarrhea 15-20 times a day, almost out of nowhere. Then the blood, then nothing but liquid and blood. It took 2 weeks to get into see a GI. He suspected ulcerative colitis and prescribed Flagyl, prednisone and mesalamine. I had an allergic reaction to the Flagyl (side note, still suffering from some neuropathy from that). I called the GIs office and they said they would talk to the doc and get back in touch. They never did and lucky for me it was Friday. I stopped taking the Flagyl, I was uncomfortable making that decision without speaking to an expert but it turned out to be the right thing for me to do.

By Sunday my my resting heart rate was hovering around 110 with heart palpitations I could feel from my abdomen to my head. Everything I did made me feel like I was loosing my breath, not exacerbated breath, more like I just want getting enough oxygen. Dizzy spells too. Felt clammy at times and overheated at times. By this time I had lost 20 lbs (165 down to 145, 5'10" male).

I made the tough decision to go to the ER. They did an EKG right away to make sure there weren't any life threatening heart issues. Passed that test. Then off for blood tests. Turned out I was severely dehydrated and malnourished. I was also low in potassium which is very bad for your heart, so I was told. They immediately hooked me up to an IV and started giving me potassium and other nutrients intravenously.

I was lucky I went when I did, if you are in the condition I was you are in danger. I don't mean to scare you, I just want to make sure you have and are considering this first hand experience. I know this probably will scare you and I'm sorry for that. I was really scared too. And worried about $$$ and work and blah blah blah.

I am really glad I made the call to go when I did. The docs believe I would have been coming in an ambulance if I waited to much longer. You'll be able to work out all the life stuff later, but you need to get well first.

Please let us know how you are doing and what you decide! I can't wait to hear that your recovering!

Edit: One last thing occurred to me. If you are dehydrated, with your inability to keep things down and/or diarrhea, drinking more fluids probably won't help. They will just pass right through you. I tried to increase my fluid intake by gulping siren 200+ ounces of water, protein and nutrient rich drinks and Gatorade. Did nothing for me but keep me from doing what I should have done in the first place, go to the ER.

Post Edited (EvanHimself) : 9/30/2017 6:54:38 AM (GMT-6)

EvanHimself- Thank you so much for your reply and for your concern. I am sorry it has taken me so long to respond to you, as I thought I did last week but must have forgotten.

I took a turn for the better on Saturday. For some reason, the Zofran started working for me and I was able to hold more food (mostly ensure, but still) down and get some nutrients in me. I started feeling better within hours of having a somewhat meal and I've maintained my weight since then despite having the diarrhea.

I have still been having watery diarrhea throughout this whole time, but not quite as much- maybe 5-6 loose bowel movements a day and mostly in the mornings when I wake up. I also haven't been eating hardly anything either, though.

On Monday, I developed a skin rash that spread to my whole body including my face, and my peri-anal region was red/raw/peeling. I called the doctor and they told me to just take some zyrtec (I'm allergic to benadryl). Yesterday my rash got a lot worse so they asked me to come in this morning.

Today my doc did a flexible sigmoidoscopy. I was not sedated so he talked me through it. Basically, all the inflammation I had before is complete resolved. He said it looks like a perfect baby healthy colon. He says I likely had a bad bacterial infection that has now been treated with the flagyl/cipro combo and that my symptoms now are just side effects from the meds, especially since it appears I'm allergic to one of them. He said given the healing of my colon without steroids or other inflammatories, as well as my bloodwork negative for any IBD markers, there's virtually no way he would have any basis to say I have a chronic inflammatory condition. He says I likely have IBS on top of the infection I had and gave me a prescription for Imipramine 10mg bid if I need it.

I am very happy with my sigmoidoscopy results, and even more happy to finally be off the meds, but I don't want to get too excited/optimistic yet. This all came back after I finished antibiotics last time and I'm terrified it will again. I'm contemplating even finishing the course of flagyl (only two more days, but I missed my dose this morning) just to be safe. Have any of you ever had or know anyone who has had complete resolution of inflammation only to have it come right back later down the road? Or is it pretty safe to say that I am not dealing with IBD here?

I agree with iPoop 100%. Sounds like a good report.
Did they take any biopsies?

I think you can clear your mind for a while.