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    • #31069
      Colleen Steele

      Oops, I forgot to ask the question of the month.

      What is on your medical calendar for July?

      Well, I’ve been trying to start taking better care of the caregiver (me), and have been checking appointments off one by one. I’ve avoided GI issues for years and now symptoms have worsened.

      So, guess what I will be having done on July 15th…GI Endoscopy and Colonoscopy. My first time ever having these done. Not trilled about it but I know it’s necessary. I don’t want anything to be seriously wrong but kind of hope they find something that explains my issues and is easily treatable.

      How about you? What is on your agenda this month?

    • #31075
      Carol Volckmann

      So glad to hear Colleen you, the caregiver, has decided to tend to yourself.

      Certainly having an endoscopy AND colonoscopy  not fun! Not fun at all. Like you I wish for you your doctors will find some answers to your GI issues and have a plan to deal with them.

      Aside from moving into our new home on the 13th, I will be going in for an ostomy surgery. There are no longer any other option. My Sclaraderma and PAH have made that quite clear.

      This is not something I am looking forward to – it will be life changing. But, what I am looking forward to is getting quality back in my life. I will finally be able to take walks, riding bikes (electric) and fear I will have an accident like I do now just by getting up!

      It will be a long recovery, but it will be worth it. Does the surgery and after effects bother me. Yes, I am quite as strong as I put out there.

      My care giver Dick is so great about all of this. He is so there for me.

      Let us know how your test go. I will be thinking about you and sending positive thoughts and love 😊❤

      • #31119
        Jen Cueva

        Hi @cdvol3gmail-com, I am hoping that the move-in has started and is hopefully in progress by now. I forgot the date for your surgery but know it will be life-altering for certain. I hope and pray that once healed; you will have the freedom to do more.

        I am happy that you will be covered with home health a while after your get home. We are here to support you along this new journey. I hate the PH and scleroderma have progressed so fast for you. Love, hugs, and prayers coming your way.

    • #31118
      Jen Cueva

      @colleensteele, thinking of you today and sending you positive thoughts and prayers are you undergo your GI procedures this afternoon. I pray that you get some answers, but nothing major, either. Please rest afterward and update us tomorrow after a full night of sleep.

      Love, hugs, and prayers are with you.

    • #31120
      Carol Volckmann

      Hey Jen, again soooo glad you are home in the arms of Manny and cuddled up with Sasha. Thank you for your well wishes, support and love!

      The move has happened and right now living in a maze of boxes. Trying to get a 4000 st foot house unpacked into a 1500 sq ft house and doing as much as we can before my surgery Monday.

      Colleen, hope your procedures went well and you found answers and best plans moving forward that will help your GI issues. Positive vibes coming across the Sound to you!

    • #31142
      Jen Cueva

      Today, our dear PHriend, @cdvol3gmail-com, is undergoing her ostomy surgery. Once I hear from her, I will update everyone. I am certain that she will do excellent.

      I said some extra prayers yesterday evening and again this morning for her, her husband, and her surgical team.

      Carol has been a supportive member here, and we want to support her as he starts her new journey after her surgery for her colonoscopy. Sadly, her scleroderma progressed and is the reason for this surgery.

      She is one tough woman dealing with PH so long; you got this, too, Carol. Thinking of you and know that you are loved and cared for by our forum members.

      • #31152
        Colleen Steele

        @cdvol3gmail-com, kind supporter of all of us in the forums, it is our turn to support you as best we can. Love and prayers have been sent your way all day and I hope you could sense the caring all around you.

        I know I will be anxiously waiting for an update. Big hugs to you.

        • #31153
          Jen Cueva

          Last night, just before I headed to bed,I received an update from our @cdvol3gmail-com. She was letting us know that surgery was done, and they were able to do it laparoscopically. That is such a blessing.

          She is now ready to start recovery and start her new chapter in life. As she has shared before, her husband, Dick, is loving and supportive, and she plans to have home health nurses help them as she recovers.

          We are here for you, sweet Carol, and know that we want to support you as you have supported me and many others when needed so dearly.

          Thinking this morning of you and your husband, Dick, as your recovery and a new season in your lives begin.

        • #31159
          Colleen Steele

          @jenc thank you for sharing the good news about @cdvol3gmail-com . She has really been on my mind and I’ve been praying that things went well. Yes, it sounds like Carol and her husband make a great team. I don’t doubt that he is taking good care of her.

    • #31145
      Jen Cueva

      Hi @colleensteele, I hope that you were doing well after your procedure last week. I know that you are busy taking care of everyone at home. Take care of yourself, too.

      I am sending you Texas-sized hugs your way.

      • #31150
        Colleen Steele

        Thank you @jenc. I just received my biopsy results. They came back with lymphocytic colitis, which from what I have read is basically inflammation of the large intestines. They symptoms listed…I have just about all of them.

        Several polyps were removed and came back as tubular adenoma. I don’t think it’s anything to worry about unless the polyps grow in size, then they can become cancerous.

        So at least now I know there is a reason I’ve been so sick lately but that is all I know. I assume a follow-up will take place next and the doctor will instruct me on how to prevent flare ups and how to deal with them when they happen.

        Anyone else have experience with lymphocytic colitis? If so, I would appreciate whatever you can share about it.

        • #31154
          Jen Cueva

          Hi @colleensteele. I am happy that you already heard back from your biopsy reports. I am sorry but I do not have any personal experience with lymphocytic colitis. But I have a friend who I worked for before with MS who was diagnosed with this as part of her IBS years ago.

          As far as I know, they contributed hers to medications that she took for her gut and her MS symptoms, If you want, I can try and reach out to her this week and see what they linked it to.

          For you, I hope and pray that these continue to be benign. Did your GI doctor or nurse ask about any medications when they told you the report?

          How can I best support you as you learn more about this new diagnosis? How is your belly doing this week? Have your symptoms remained unchanged after your procedures?

        • #31160
          Colleen Steele

          @jenc thanks to the way our world works now, I got my results and doctor notes through Mychart. I haven’t heard from the doctor other than after the procedure I was told to schedule a follow up in a month or so. I know their office is very, very backed up because of Covid but I would like at least a phone conversation with a doctor if I can get one arranged.

        • #31172
          Jen Cueva

          Hi @colleensteele, yes, I totally understand; we are in this world where we, as patients, can go in and read our charts online. This can be frustrating as well as beneficial. I am sorry.

          I know at times like this, you need and want to know a bit more. You deserve to know now, not in a month or so. If you’re like me, by then, I may end up canceling the follow-up.

          Is there a possibility that you can message the doctor or nurse via the phone or your patient portal?

          I have had brief calls with my PH doctor and PCP several times over the last several years. Unfortunately, COVID has them all backed up, so this is what I have found helpful after trying to get information from my nurses online or on the phone.

          This is when my patience wears thin. It is frustrating, I know.

    • #31173
      Carol Volckmann

      Colleen thank you so much for your kind words, support and love. I am doing well and hope to be home tomorrow with home care for the couple of weeks. This ostomy will give back quality to my life and what I have to deal with isn’t as bad as anticipated.

      Not being able to talk with your do tor after your procedure just doesn’t sound acceptable. Are able to call his/her office and ask for a telephone consult? I know they are all so busy.

      Five years ago they found about 12 or more polyps and took out. I do not remember what he called them, just to keep an eye on them if they did get larger. I will look back at MyChart (I really dislike it and all the portals!) and will see if it is the same.

      Please don’t give up on getting hold of your doctor and having to wait a month or so.

      Wishing always the very best with hugs filled with love.


      • #31177
        Colleen Steele

        @cdvol3gmail-com you are so kind. Here you are recovering from your own procedure yet taking time to express concern for me.

        I’m so relieved for you that things went well and it’s great to hear you feeling optimistic about having proceeded with this. I’m sure it will change your life for the better, and you deserve it.

        I will try to get a follow-up with the doctor soon. I was told after the procedure that many polyps were removed…whatever many is to them I don’t know. But they have come back non-cancerous so at least there is that.

    • #31174
      Carol Volckmann

      Hey Jen, thank you so much for all your support and love!!!

      It really is much better than I had anticipated. Both Dick and I will be able to deal with this and now I will be able to get back to my walks and soon biking! It is all a bit weird but I can deal with weird hehe he!


      • #31183
        Jen Cueva

        I have some awesome news. Our friend, @cdvol3gmail-com, was on her way home today. She is excited to start on this new life and enjoy some freedom once she recovers.

        Carol, you are always so supportive to me and all of our forum members. We are here cheering you on as you recover. Please let us know how we can best support you and Dick.

        I look forward to hearing about all of your shenanigans once you recover.

    • #31191
      Carol Volckmann

      Hi Colleen, thank you so much for your encouraging words, support and love.

      I arrive home yesterday – yeah! Still trying to manage my pain, but that will settle down I am sure. I know the ostomy is overwhelming right now, but it is a process and I will get through it.

      I hope you will be able to talk with your doctor at least by phone very soon. Please don’t let up. The polyps were benign, so that is very good news. I just hope you are able to talk real time to go over how to reduce your symptoms.

      You are in my thoughts and in my heart. Have a restful weekend and be kind to yourself.

      Warm hugs 😊❤


    • #31196
      Jen Cueva

      Hi @cdvol3gmail-com, I am so happy that you are home resting and recovering in your own bed. I cannot begin to imagine how overwhelming caring for your ostomy is for you right now.

      I hope and pray that you can stay ahead of the pain as it heals. It must be so painful. I am grateful that the home health nurse is coming by today.

      Please speak up if you aren’t getting any relief from the pain. As you know, it is easier to stay on top of it. Because once it spirals out of control, pain management is a struggle.

      What are they giving you for pain as your ostomy heals?

      My thoughts and prayers continue to be with you, Dick, and Spirit. I know that you are in the best hands. Please let us know how we can best support you during this adjustment and recovery period.

      I’m certain is it mentally and physically taking a toll on you.

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