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Newly diagnosed with colitis and so scared

I’ve had IBS for a long time now, but yesterday after my worst flare ever (complete with profuse sweating, nausea, and feeling faint—all new for me) plus several hours of bowel movements of mostly just blood, I ended up in the ER overnight and was diagnosed with colitis. The doctor put me on Augmentin 875 mg, and I’ve been instructed to follow up with my gastroenterologist this week.

I have fibromyalgia as well, and I think this has kicked it up a notch.

I was feeling slightly better this afternoon, and the bloody bowel movements had slowed down, but now I’ve had 3 in 45 minutes. I feel so gross. I’m so scared.

My gut is making noises and I just want to sleep, but I’m just getting more and more distressed. I can handle the pain to some extent, but the blood and all the wiping just disgust me. I guess the gastroenterologist will be able to decide if this will be chronic or a one-off, but as someone who already has chronic illness, I’m so sad and just absolutely terrified.

I’m glad I stumbled upon this forum. I’m going to need y’all 🙂

  1. Hi! So sorry you're dealing with this now, how awful. I'm responding because I'm going through the exact same thing right now! I've also had IBS for years, since my 20s (I'm 55) with the exact symptoms you just described. I had an attack last night, and now, like you, I have the bloody diarrhea. I'm worried it's cancer, as I never had this symptom before. How long have you had the bloody stool? Mine is just watery with blood. No pain now and my IBS symptoms from last night are gone. Just not sure what's up with this lingering bloody diarrhea. I'll be following your post, and please keep us updated. Good luck!

    1. That's good you had a fairly recent colonoscopy, but they'll most likely do another one for you. I haven't had one in over a decade, so who knows what they'll find. I hated the prep, and dread going through it again, but it's a necessary evil. Colitus can definitely cause bloody stool and diarrhea, I researched it a little, so it sounds like that could be your problem. But best to stay off the internet-I've learned my lesson doing that too! Keep resting today, and good luck tomorrow 🙂

    2. So...I went to my appointment yesterday, and the doc says she doesn't suspect ischemic colitis, which is very good news. She's not sure it's colitis at all. It could be diverticulitis, which apparently is pretty common in the large colon where I'm having my troubles. She said it could be food poisoning, a virus, bacteria--she's just not sure. I got my ER stool culture results, and there's no sign of Salmonella, Shigella, Campylobacter, or Enterohemorrhagic E. coli, so that's good, I guess. She was a little irritated that they didn't test for C. diff or ova and parasites, so I was sent home with a stool collection kit. I got a sample this morning, and it was just a 2 x 3" plop of what resembled cooked chopped spinach. Doing the collection was gross, and I'm queasy all over again.

      We talked about colonoscopy, and she doesn't want to do one until we rule some of this stuff out and until I'm stronger. There's no way I could do the ordeal of the prep right now. She gave me a prescription for Phenergan and said I could alternate that with the Zofran for the next few days so keep the nausea at bay.

      I'm in bed yet again today. I feel really discouraged because this has gone on nearly a week now and it's just so, so gross. Anxiety is still high, heart pounding sometimes. I'm trying to not get overwhelmed again, but it sure is hard.

  2. Hi , we are so glad that you are here too! I know it can be so hard to think through the possibility of having multiple chronic illness (I myself have multiple). I hope that this ends up being a one-off and that the medication they gave you helps. That being said, we are definitely here for you as you go through this journey. Please keep us updated on what the doctor says. And remember that often stress and anxiety can make the symptoms worse! We have a lot of resources on this site about how to feel calmer so that you can get some rest:

    Also, you likely know this with IBS, but eating foods that are gentle on your digestive tract during this time might help with the symptoms too. I do a lot of white bread, white pasta, applesauce, soup, when I'm not feeling well.

    Please let us know when you have more info! We're here for you no matter what.

    - Eshani (Team Member)

    1. Hi Eshani! Thanks for writing back to me. I'm so upset! I was in the ER again yesterday because I couldn't drink or eat. My sweet daughter went out last night and bought a variety of Pedialyte products and applesauce, so I'm trying to get those down. I just have zero appetite, and the thought of eating is disgusting, even with the Zofran.

      I have a lot of anxiety and relaxing is not my strong suit. Thank you for recommending the stress resources above and for welcoming me into the community!

      1. Hi , I'm so glad you have your daughter's support, but I'm sorry that you have zero appetite. Feeling that way is never fun. And it's awful that you ended up back in the ER! Were they able to do anything helpful? I know sometimes they give some IV nutrients.

        I have a lot of anxiety as well, so I definitely relate. When I first was diagnosed, I wondered a lot about what would happen with my life--but seven years later, I am making it, hitting a lot of my goals. I have good days and bad days, but my life works for me. I say this to hopefully give your anxiety some comfort - it's easy to read the bad stories and assume they'll happen to you. But I have found a lot of ways to cope with having an illness and my loved ones are still sticking by me. I truly believe you will find your way, even though I know the beginning of the journey is tough. <3

        - Eshani (Team Member)

    2. They gave me 2 L of fluid. I don't know if they added anything in. We waited 7-1/2 hours in the waiting room, and then after we complained several times, I was put on a bed in the hallway, but at least at that point I could lie down. It was truly a stressful experience!

      I managed to eat a piece of toast and drink a cup of tea this morning to fortify me for my trip to the GI doc at 1:15 today. I hate feeling so weak and dizzy, and I'm so stressed about going to the appointment. I'm anxious about the blood and having an accident. I'm anxious about the probability of having to do another colonoscopy. Ugh--I'm just a ball of nerves, and I know it doesn't help one bit.

      Thanks for the uplifting words of experience. I know I'll come through okay, but it sure is scary now.

      1. You are definitely in our thoughts and prayers, @Kristekat67 . That is a lot for one person to go through, and having your support person undergo such serious surgery. It may be helpful to hire an in-home nurse to help out at first for either just your husband or for both of you so that your symptoms do not worsen.

        While it may be hard, focusing on the small wins helps, like that your disease looked better during your CT scan, will help get you through these dark times. It seems like when it rains it pours, but it is definitely testing your strength! Please keep us posted on how both your colonoscopy goes and your husband's bypass surgery. You are in our thoughts and prayers!
        --Julie (Team Member)

      2. Hi @Kristekat67, I am so sorry that both you and your husband are going through so much. I can only imagine how difficult it must be to be dealing with all these illnesses and having to be each other's support systems.

        I really hope that you are able to speak with a doctor about some of the concerns that you're having about getting through the colonoscopy. Often this is the gold standard for diagnosis, which is likely why you're being asked to get one done, but it sounds like you're having some internal and external stress related to it. Please try to communicate with your doctor(s)! They are there to help.

        You and your husband are in my thoughts! Please do let us know how things are going. Sending love. -Eshani (Team Member)

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