Hi Dusty, thank you for your response. I have been seeing the same GI for approx 7 years. Over that time we developed a good relationship, I thought. He ran many tests, put me on lots of different medications, including methotrexate 20 mg weekly , prednisone 10mg's daily, lots of pain medication including morphine. I have asked on may occasions what the diagnoses was, he would not answer. Finally, after one session, he said Typhlitis, which is an inflammation of the cecum. I have been admitted to the hospital approx every 3 months for 10 days for antibiotic,/cortisone infusion and for pain. I sat with him in my hospital room, explaining my pain, what it felt like what I thought it was. I thought it could be adhesions wrapped around a bit of bowel.
Why? due to high white blood cells constantly, and high calprotectin tests, monthly, I was sent by local GP to a hematologist, who ran various tests including bone marrow tests. He thought it could be Mederitan Fever, which Jewish people seem to get, and are treated with an injection. (?). In the end, after sending to two different labs for DNA testing, it came back negative. His report came back, ADHESIONS causing the pain.
Well, two years later, I was having vaginal bleeding. I had a hysterectomy 40 years ago, so how could this be? Saw local GP's 6 times, who could find no reason. Went to a specialist, Gyn 3 visits, could not find the reason. I had a flu injection on a Friday, the following Monday, another visit the Gyn after I rang again for an appointment, examine carried out, nothing found, but, bleeding, naturally always very light. That week was feeling extremely ill, felt like fevers, then cold, then could not keep my clothes on, showers, just ill. No bowel movement for 4 days. On Thursday, I had to help physically with the elimination, by reaching up into the anus to help remove stuck bowel. I could feel it, it just did not come out. When I did it was covered with a cheesy substance, I immediately put into a lab container, sent for a calprotectin test. On the following Tuesday, saw the GI, he stated he wanted me to go to the hospital, he wanted me to have an infusion, but did not tell me why. In the meantime, I had an appointment with a gyno-urologist, who I had seen before, on the upcoming Friday. I asked, can I go to the hospital after my appointment on Friday. Okay, so, I was home now from Tuesday to Friday, after my appointment, I went to the hospital. Gyn could not find the source of bleeding. Connected to cortisone, and various antibiotics. While in the hospital, I continued to bleed lightly. but, Wednesday bleeding was worse. I rang her rooms, left a message. Lol! She comes to my room , the Gyn, with a nurse, carries out one exam, then says, Ï want to do it again. This time, she pushed up hard, then comes out stating "I feel a large mass at the top of your pelvic region!" Well, all the alarm bells went off in m head. A CT scan was organized, came back "communication between the bowel and vaginal region" following day MRI by GI, again, "communication between the bowel and vaginal region", I was told to prepare for colonoscopy for Friday morning, so, preparations were underway on Thursday afternoon. Still connected to fluids, and cortisone. The report came back yes a vaginal fistula, and I was groaning while under anasethetic. They thought it was from the fistula, I know it was the pain in my lower right side.
A fistula was found coming from diverticulitis into the vagina. I was informed that the sigmoid colon had to be removed. Emergency surgery was to be performed. Except surgeon was not available for 10 days. I was sent home, a drive of 11/2 hours or slightly more, depending on traffic. During that time, alone in the hospital with no family around, as we live in small country town, the hospital in Perth, 2-3 hours away one way for the family. Once home, my brother -in-law passed away, children going crazy, sister asks my husband to come across to help settle children and family. He goes cross country another state, I'm at home. But, it was wonderful being home as our property has the atmosphere of being park-like, very beautiful and very green. I collected thoughts and all my wits, strength and energy, spiritually, to prepare for this surgery. I don't know why, everyone, from the surgeon, the anesthetist , all the surgeon's assistances, nurses, continued to tell me it was going to be a very serious surgery and extremely dangerous. Perhaps I would wake up with a stoma. Finally, I had to ask them to please stop saying that!
Okay, surgery was 5 hours, when I woke up, just felt sore on the abdomen. I should have been connected to analgesics, ketamine and pain medication, nurses failed to do so. I was in ICU for a day, transferred to my room, and was on the ketamine and pain meds 3 days, but extreme pain in my lower right side. The surgeon reported, no adhesions! It was not adhesions causing the pain. It was not the diverticulitis causing pain, the pain was quite severe. I found after every colonoscopy the pain would be severe, like hovering 9 level. While in the hospital, I felt very little pain from the surgery but was given lots of meds for pain in right side. Interesting no doctor asked, and no nurse asked where the pain was! Came home, now I have to get a whole new bowl system in place. It comes at all times, it comes when it wants to, does not care where I'm at, or where I go, if there is a toilet or not! It just comes! Incontinence! Again!.
Follow up with GI now, approx 6 months after surgery where he advises I will now be on a 6 monthly visit. I stated, "surely, that is too long, can we make it every 2 months?" No", he says, I have very ill patients that require my time."
In the meantime after my surgery, I had many flare ups, lots of inflammation, antibiotics given, by GI, but, no conversation. The local GP even rang him, asking for advice, he state äll is under control" Ï have her on a 3 monthly watch , with blood tests and calprotectin test". The GP asked if we couldn't do a test with a camera, the GI stated, IT IS NOT NECESSARY". I would ring his office, no response. I had private e-mails to him, no response. His private cell phone number, no returning of my calls. Text messages, no response. Lengthy messages to his office, still no response. Had to see another specialist, immunologist, who gave me the GI name initially 8 years prior, told him of the situation, he stated Ï will send him a copy of blood tests which GI order anyway, and ask him about the inflammation levels. I finally get a two worded e-mail, I sending you new scripts for antibiotics!
So, for the last year, there have been may episodes of pain, inflammation, more pain. Even went to the pain specialist who set up a pain plan with the government so I can get various pain meds thru the local GP. Apparently, this will become a new standard in Australia. Long term meds have to be prescribed by the pain specialist, who in turn report to the government of the plan. In the meantime the local GP is given a copy of the plan then he can prescribe the pain meds. A good idea.
I still do not have a diagnosis as to what is causing the inflammation and the pain. Apparently, there is one doctor listed, he is the one I have been seeing, so, I see him in early Sept, and I will be asking a lot of questions.
Sorry for the long dialogue, you are welcome to delete it, but, there it is.
