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  1. C

    Heard from Doc today

    Compared to O my recovery is rather boring… So far everything seems to be healing slowly and nicely. Wound is not closed yet, so I have to keep rinsing it for another few weeks. Pain is manageable, it is more itchy now. Also very tired but I’m getting an iron infusion next week so hopefully that...
  2. C

    Heard from Doc today

    Marvelous to hear that you are finally able to go home after so many weeks! I hope that recovery from now on will be more smoothly. I know from experience that healing from this surgery can be tedious but O is really unlucky. Wishing you safe travels, with hopefully little/manageable pain for O.
  3. C

    Heard from Doc today

    Oh gosh, that is a lot to deal with and it sounds so very, very painful. No wonder she feels a bit defeated. I have no trouble imagining that it is impossible to sit on a toilet like that. I really hope that from now on everything will slowly get better.
  4. C

    Heard from Doc today

    It all does not sound very normal to me. So, glad to read that they can see and evaluate her that quickly and that you are hopefully not travelling home too soon.
  5. C

    Heard from Doc today

    That does sound really rough. I really hope she will feel better soon and is able to drink and eat (that they let her go like that; doubt they would of discharged me while throwing up and blacking out). Does she have pills against nausea? Those have helped me. Hope her ostomy is not giving her...
  6. C

    Heard from Doc today

    Sorry to hear that recovery has not been very smooth. Hope she is out of the hospital and that the pain is doable, specially during your long journey home (8 hours? yikes, I found the drive home already tough and that took about 75 minutes…).
  7. C

    Heard from Doc today

    Tough and brave decision.Wishing you all the luck with surgery and recovery. Really hope everything will go well and that the pain will be manageable. Thinking of you and O.
  8. C

    Heard from Doc today

    Just to let you know that your kind words of support just lifted my spirits. I’m so done with the pain and misery caused by my ‘janky colon’ and ‘rebellious rectum’.
  9. C

    Heard from Doc today

    According to my GI and surgeon a proctocolectomy is the only option (inflammation with narrowing/polyps and I have fissures, so a pouch or a reconnection are not really an option…). Not looking forward to it but I hope everything will go well tomorrow and afterwards… Like I said: good luck next...
  10. C

    Heard from Doc today

    Nice to read that they are very thorough with testing and that there might be options. However that also comes with the difficult task of choosing… Wishing you all the best. Also wanted to thank you for all the information, helps me accept my surgery this thursday a bit more.
  11. C

    Heard from Doc today

    Don’t know what to say apart from that I feel for O (and you) and that I wish you the best of luck Monday. Not having definite answers and having to (decide to) do something what you (probably) don’t (really) want to do, is tough.
  12. C

    Heard from Doc today

    I believe you wrote that a covering doc was suprised that O was doing well on Rinvoq because she was the first Crohn’s patient he saw that has lasted longer than a month on it. I didn‘t find that remark very hopeful... But perhaps I‘ve misunderstood. Really nice O can manage such a busy life...
  13. C

    Heard from Doc today

    You may ask, no problem. Shortly after the diversion I was symptom free. Since february my main symptoms are pain and urgency with (quite a lot of) rectal bleeding. I just spoke with the surgeon again and she said in case symptoms worsen I need to contact the hospital. So unfortunately I don’t...
  14. C

    Heard from Doc today

    How nice to read that O’s blood labs look good! Hope that the scopes also show improvement. I have my loop (ileo)ostomy since late july. Long story short (this is your topic…) I have severe Crohns disease of my colon and rectum. Initially cyclosporine managed to save my colon and remicade and...
  15. C

    Heard from Doc today

    Never posted here before, but I’ve been following your story for a while now. I just wanted to say that I admire how O (and you) are coping with everything. I find it inspiring to read how you all keep going. I’m in a somewhat similar situation and reading how you and O are dealing with...
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