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An Intro..

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jenny42127
jenny42127

Im 40 something female from the NorthEast US. I was diagnosed 6 years ago through colonoscopy and cat scans. I didn't take my disease very seriously back then and it's only been about 8 months that Ive had to come to the reality that my life has changed. I've lost 30 lbs, and have had pnemonia and an infection in my transverse intestine from divir, which forced me to start taking my disease seriously. I can no longer eat more than a small portion of low residue food at a time without getting very ill, as a result of this Im having my sigmoid removed in July in hope that I can be sick less..I have pockets and signs of infection in all parts of my large intestine, although my surgeon promises me they will stick to one portion for this surgery, but gage the time left for the rest. Im glad to have found this place and happy to find people who have had surgery to bounce questions off of and also happy to share any knowledge that I can through my own trial that may help someone else..Cheerssmile!

2 likes, 14 replies

14 Replies

  • elizabeth83503
    elizabeth83503 jenny42127

    Posted

    I think this disease will become much more important as more people are diagnosed with it. Scary to think that even with my high fiber diet, my dx is severe with no symptoms. I have stopped eating most meats.
    • jenny42127
      jenny42127 elizabeth83503

      Posted

      Agreed! I had to give up red meat and pork..I eat tender turkey and chicken and tuna, eggs for protein..Recently had to give up rice and oatmeal..I think as long as I can recover to a feeling of good health I can give this stuff up for life, I just still don't feel that even after Eliminating so much that I'm better. Its true though with each trigger find and elimination I do feel a fraction better..I think though to feel complete better I need the surgery..Right now I feel most myself on day 3 of full liquids..So safe to say food is the culprit..

  • vic_07103
    vic_07103 jenny42127

    Posted

    Hi Jenny

    I’m so sorry to read about your recent realization, it sure is tough to accept such a big change, although we’ve all been through it and are here to support you.  There are more people out there than you think suffering with it!!  Lots of strength and patience to you for July’s surgery😊

    • jenny42127
      jenny42127 vic_07103

      Posted

      Thank yousmile!! I am thankful for this support and a bit relieved to have found it before surgery
  • ellen_46197
    ellen_46197 jenny42127

    Posted

    Hi Jenny can I ask you what you do for pain! I have been on antibiotics for 2 weeks and probiotics I have stuck to easily digested diet and unfortunately I am doubled over again this morning heating pad make it worse
  • jenny42127
    jenny42127

    Posted

    I take Tylenol, use the heating pad. If I have rectal pain I will alternate ice pack and heating pad there. Also big for me is daily epson salt baths, helps to tame down the muscle cramping..Also try a soothing relaxing tea that will calm the nerves. Alternate these throughout the day. I think also the liquid diet for 2 days, and then to full soft for a couple days, then soft foods for a few days helps a lot. Sometimes the pain resides with the clearing of the problem. If you fail to clear the issue, the pain will hang around..This is just my experience..There is a drug that calms the stomach lining that your Dr. can presrcibe..the name is leaving me..but if it's really bad you can ask for something like that temporarily. Hope this helps! 

    • Mtwok
      Mtwok jenny42127

      Posted

      Maybe you mean the medication Buscopan? Buscopan calms abdominal cramping and pains. It is available without a prescription in most places.

      It is not available in the US. 

    • kate65092
      kate65092 jenny42127

      Posted

      Hi jenny

      You say you get rectal pain, is it severe burning pain, mine is and I break out in sweat, it's very scarey

    • jenny42127
      jenny42127 kate65092

      Posted

      I also get hemmeroids really bad, and anal fissures, which those can burn and sting..I often wonder if the divirticulitis makes me prone to those conditions also..Thats a whole other treatment regime for me..I use A and D ointment, a prescription steroid and lidocane blend, ice and heat alternate and alternate epson salt and baking soda baths..and obviously bland diet.. I also make sure to rest and not sit on anything hard for a few days and take tylenol for pain..So something new I am trying for pain recently is CBD oil. Its legal in NY and no prescription needed,.although it has no narcotic component at all, its derived from seed and not plant,.so technically its not even a medicinal..I got it at a natural medicine pharamcy. I tried for first time this morning and its also supposed to help with anxiety..and Ill tell you I did feel that it took the edge off a bit..

    • jenny42127
      jenny42127 kate65092

      Posted

      I was having bleeding and pain so went to colorectal specialist, and they examine and find. For uncomplicated ones which I have so far, meaning they havent turned into fistulas they have you use s componded ointment...Which forced me to find a pharmacy that did compound meds..Not many that do that anymore..Thats how I found the wellness, natural medicine pharmacy because they are able to compound
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