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New crohns diagnosis

I have recently been diagnosed with crohn's disease. It started out with me having mild pain in the center of my abdomen radiating to my back. I recently had a baby and thought maybe it was some weird constipation thing. At first it was only so often then became more and more frequent. Then in January 2021 the pain started becoming more substantial, I wasn't able to sleep and it then became more widespread pain throughout my abdomen. Eventually I went to ER where after a CT scan they told me that my appendix was inflamed and part of the colon next to the appendix. They determined it had to be appendicitis so I had an appendectomy that night. The initial dr. I saw at the ER said I may want to follow up with GI after surgery, even though all other doctors and surgeon said it was definitely appendix and not to worry about crohn's. Well about a week after my surgery I started having a lot of cramping abdominal pain and also back pain(felt more like super tense muscles in my back). I decided to go to GI and oddly enough after that week I was feeling a lot better and almost decided I didn't need to go to doc. But after that appt. She wanted to do a colonoscopy and upper endoscopy which I did, even though my symptoms had been very minimal.

I was very surprised to find out that they suspected crohn's right away. They said severe inflammation in the cecum and listed off several erosions they found in various parts of the colon. They did do biopsies which my doctor then said that really confirmed the crohn's diagnosis. Even though I wasn't quite sure what they said, still haven't seen the report. She also indicated its in the moderate to severe stage. And that she wants to treat really aggressively with injections right away and that she doesn't think any pill will help at this point.

They also found a duodenal ulcer during the endoscopy which I'm assuming caused the pain that I originally felt in the center of my abdomen.

I just am having the hardest time wrapping my head around it. I have been talking to a lot of different people who have crohns and there symptoms were so much more severe than I have been experiencing. I really don't have diarrhea and I wouldn't consider it constipation either. Other than the couple weeks of abdominal pain, I have been feeling pretty good. I have not noticed a difference between any food I have been eating. Maybe slight gas pain like, but nothing horrible. I just wonder could this doctor be wrong? She wants me to start on medication right away. I am so hesitant to do this especially since I'm not in incredible pain. I am breastfeeding and am so concerned about the side effects short and long term of medication. The worst complaint I have is the extreme anxiety and depression and sleeplessness that this diagnosis has caused me! I read so many people saying it took them years and years to get diagnosed with crohn's. Couldn't the doctors be wrong with me? Should I wait to start medication? Please help if you can, this has truly been devastating to me, I feel I can't trust what my doctors tell me. They are so quick to dismiss anything that could help naturally. I have asked her to run all other blood tests and stool samples which she did and everything is coming back fine.

  1. Hello, firstly, im sorry to hear of your suffering...
    Your journey actually sounds fairly similar to mine tbh, I was diagnosed with Crohns over 3 years ago... originally I started off with pains and bowel issues now and then, which gradually became more frequent and severe.

    I had all sorts of tests done including stool tests, blood tests, xrays etc and every single one was coming back normal! So I was just told it was probably only IBS.

    It wasn't until I started vomiting that i got admitted to hospital and they did a colonoscopy and diagnosed me with crohns and started me on meds straight away.

    The findings that you mention do sound very familiar and I'd say they would probably be able to tell pretty well what it is based on what you've mentioned, so I wouldn't worry too much about whether they're accurate or not because its most likely that this is something they've a lot of experience in. The sooner you get onto treatment the better because the longer u leave it the more likely you are to get more complications down the line! Also I did find that I b4 I was diagnosed I would maybe have 1 or 2 really bad weeks and then for a week or 2 I would literally feel fine again and I'd be thinking goodness, was I imagining all that!! Its just the way crohns goes... it comes in fits and starts.

    If you're concerned about the breastfeeding part, speak to your GP or the GI consultant and confirm, but I dont reckon it'd be an issue.

    Also, don't be afraid or embarrassed to ask for a second opinion if you still really aren't sure, but I was literally diagnosed pretty much overnight because the signs are pretty obvious once they get a look inside 😉

    Sorry this is a bit of a jumble but hopefully it helps a bit. Good luck.

    1. I am waiting to have an upper endoscopy and pill camera but my symptom profile is very similar to yours. I suggest you check out this reference on Facebook or try to google it. It is IBD coach Andrew Kornfeld -it is quite informative and might help you in your future decisions.

      1. Firstly, I totally hear your concerns! I know it's overwhelming!

        Honestly, I would assume that if they are certain they have seen active disease, and the biopsies confirm that, then the diagnosis is probably correct.

        I can only tell you what I would do, but my circumstances and experiences are obviously different to yours. Personally, I would start treatment. The risk of disease suddenly rapidly progressing doesn't seem worth it to me. It could massively impact your life and how you feel, and the last thing you need with a new baby is not being able to function properly.

        Sorry I can't be of more use, but ultimately, the decision has to be yours.

        ~ Sahara (team member)

        1. I’m sorry you find yourself on this ibd journey, especially at the same time as a new bub.
          It took me a very long time to accept I had a permanent chronic health condition. The aim of treatment isn’t cure (at this stage there is no cure) but rather to get disease into remission and prevent on going damage and complications.
          Totally understand your concerns with breast feeding. You should of course really look into what is best for you and your baby.
          If the crohns isn’t treated or is not able to be brought under control your ability to care for your baby will diminish.
          If you arnt comfortable or confident in your GI, get another one, they are going to be an essential part of your life going forward.
          One thing that has always stuck with me is being told that your symptoms may not be a very good indication of the extent of the disease.
          All the best going forward. 💖🌸

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