- Joined
- Jul 12, 2012
- Messages
- 947
Hello! I'm new around here. :sign0085:
I was diagnosed years ago with IBS. I have constipation which has now gotten to be very severe since two years ago when I got Complex Regional Pain Syndrome (CRPS) formally known as, and still referred to by most in the medical community, as Reflex Sympathetic Dystrophy (RSD). Painful condition. Feel free to ask me questions on this one. I have RSD full body now as well as a host of other health issues such as Peptic Ulcer Disease, GERD, Hypothyroidism, Dry Eyes, Dry Mouth, Light Sensitivity, Muscle Weakness, Muscle Spasms 24/7, Vascular Instability, etc. just to name a few. Many of these symptoms I had before RSD but the symptoms have only magnified since getting RSD. As a teenager I would get so bloated that I would go up either one or two pant sizes. Still do. At times, the stomach muscle spasms and gas cramps can be worse than child birth. (I've given birth to three children so I know what I'm talking about here.) There are many foods I stay away from because they cause problems for me. I just saw a nutritionist at our local hospital who wants my pcp to test me for celiac's disease. I have a lot of pain in the pelvic area as well. Sometimes the stool is so hard in the pelvic area that it hurts to even move. I did a bowel cleanout last weekend and am now using 1 capful of Miralax each day as maintenance. More if necessary. I am still having the pelvic area pain. None of my gyn issues (Yep, got a whole host of them too. ) are contributing to the pain. I believe it is the bowels. It's tough getting a doc to listen and do the right work up. I've just suffered with the symptoms for years.
You'll notice the title says our story. There's a reason I titled it that way. My daughter (14yr ):kiss: has been suffering since she was about eight or nine years old. She would have intermittent coccyx pain. I notice she also had bloating. She thought it was because of a fall she had roller skating. Knowing the anatomy of a child, it was an unlikely cause for her pain. The docs even said the same thing. She saw several docs over the years and was told things like, you have a bruised tail bone, or it will get better in a few years etc. This past January, her tail bone got to hurting so bad she could barely walk much less sit or lie on her back. I had never seen her in so much pain before. Again, we were told she had a bruised tail bone. At one point, we were told she had a hooked coccyx. After researching that diagnosis, I discovered that constipation can cause inflammation of the coccyx; which she had and still has. The inflammation of the coccyx has not improved and she has now developed more tender spots on her spine. In February she had to be rushed once again to the ER for a blood filled, ruptured, ovarian cyst. She is having lengthy periods and heavy mensus. She is not sexually active. The gyn doc gave her birth control pills to try to control the cyst issues and the length of her painful periods. This did not work. She had exploratory surgery this past Monday. The gyn doc found two polyps on the left ovary; which she removed and a cyst on the right ovary. Now here's the strange part. The gyn doc also found a membrane attached to one part of her colon that extented out to another part of her colon and attached to that part of the colon as well. The doc removed the membrane that was connecting the two parts of the colon. She said that when she did so, it allowed the colon to drop to it's normal position. She said it was quite a drop. Anyone ever heard of this? She also found that my daughter has a colon more than twice the size it should be. Back in May, my daughter had blood work that showed mild inflammation in the gut. Anyone got any ideas on this?
Her GI doc had the PA call me. They were going to put my daughter in the constipation clinic where the children see a psychologist to make sure they are adhearing to the plan for stool elimination etc. and the PA who would monitor their meds etc. I started asking questions like is the inflammation due to the constipation etc. The PA had me read the name of the blood test and the numbers. The test indicated that there was mild inflammation in the gut. She then said, "That changes things. I will have to talk with the doctor and get back to you." I haven't heard back from her so after my daughters surgical follow up appointment today, I will have to call the GI doc.
I have a 19yr old son:kiss: who had infant botulism at four months of age. We had a lot of struggles once he was released from the hospital. He was eventually diagnosed with constipation, peptic ulcer disease, generalized mild hypotonia, reactive airway disease, learning disabilities, dyspepsia, inflammation of the esophgus and duodenum just to name a few. He was very thin and had to have supplemental feeding in order to grow properly. I'm happy to say that all our struggles and hard work paid off. He is now six foot, two inches tall.:banana: Like my daughter and I, he also has bouts of low blood sugar where he gets real shaky and fatigued. Also like both my daughter and me, he has sleep issues. He had a nissan fundoplication with G-Tube placement when turned two years old. Had his birthday in an out of state hospital that year. There, they diagnosed hiim with severe delayed gastric empting. Back to the topic at hand. He had a G-Tube resection and removed the G-Tube when he was either 15 or 16 years old.
Hubby is one step away from frozen shoulder. The other shoulder is now acting up as well. :stinks:He is tired and I'm sure feeling overwhelmed with all that's going on right now.
I have another son in the Air Force who is over seas and just turned 21.:emot-dance: I was sad that he wasn't here to celebrate that special birthday with us. He is a wonderful Christian young man whom I am very proud of.
So as you can see, we have lots going on in our family. :ghug:Any helpful ideas or thoughts would be greatly appreciated. To date, it's been a long road. But, God is good and has been there every step of the way.
One more thing. My daughter and I have not had an endoscopy or colonoscopy. My daughters gut inflammation showed up on a blood test.
My mom had Lupus, fibromyalgia, possibly rsd as well as many other issues. She died at age 59. Too young if you ask me. Both of my parents have/had hypothyroidism and diabeties.
I would really like some help figuring things out with my daughter. She is not bouncing back from her surgery as would be expected.
Blessings,
Naturelover
I was diagnosed years ago with IBS. I have constipation which has now gotten to be very severe since two years ago when I got Complex Regional Pain Syndrome (CRPS) formally known as, and still referred to by most in the medical community, as Reflex Sympathetic Dystrophy (RSD). Painful condition. Feel free to ask me questions on this one. I have RSD full body now as well as a host of other health issues such as Peptic Ulcer Disease, GERD, Hypothyroidism, Dry Eyes, Dry Mouth, Light Sensitivity, Muscle Weakness, Muscle Spasms 24/7, Vascular Instability, etc. just to name a few. Many of these symptoms I had before RSD but the symptoms have only magnified since getting RSD. As a teenager I would get so bloated that I would go up either one or two pant sizes. Still do. At times, the stomach muscle spasms and gas cramps can be worse than child birth. (I've given birth to three children so I know what I'm talking about here.) There are many foods I stay away from because they cause problems for me. I just saw a nutritionist at our local hospital who wants my pcp to test me for celiac's disease. I have a lot of pain in the pelvic area as well. Sometimes the stool is so hard in the pelvic area that it hurts to even move. I did a bowel cleanout last weekend and am now using 1 capful of Miralax each day as maintenance. More if necessary. I am still having the pelvic area pain. None of my gyn issues (Yep, got a whole host of them too. ) are contributing to the pain. I believe it is the bowels. It's tough getting a doc to listen and do the right work up. I've just suffered with the symptoms for years.
You'll notice the title says our story. There's a reason I titled it that way. My daughter (14yr ):kiss: has been suffering since she was about eight or nine years old. She would have intermittent coccyx pain. I notice she also had bloating. She thought it was because of a fall she had roller skating. Knowing the anatomy of a child, it was an unlikely cause for her pain. The docs even said the same thing. She saw several docs over the years and was told things like, you have a bruised tail bone, or it will get better in a few years etc. This past January, her tail bone got to hurting so bad she could barely walk much less sit or lie on her back. I had never seen her in so much pain before. Again, we were told she had a bruised tail bone. At one point, we were told she had a hooked coccyx. After researching that diagnosis, I discovered that constipation can cause inflammation of the coccyx; which she had and still has. The inflammation of the coccyx has not improved and she has now developed more tender spots on her spine. In February she had to be rushed once again to the ER for a blood filled, ruptured, ovarian cyst. She is having lengthy periods and heavy mensus. She is not sexually active. The gyn doc gave her birth control pills to try to control the cyst issues and the length of her painful periods. This did not work. She had exploratory surgery this past Monday. The gyn doc found two polyps on the left ovary; which she removed and a cyst on the right ovary. Now here's the strange part. The gyn doc also found a membrane attached to one part of her colon that extented out to another part of her colon and attached to that part of the colon as well. The doc removed the membrane that was connecting the two parts of the colon. She said that when she did so, it allowed the colon to drop to it's normal position. She said it was quite a drop. Anyone ever heard of this? She also found that my daughter has a colon more than twice the size it should be. Back in May, my daughter had blood work that showed mild inflammation in the gut. Anyone got any ideas on this?
Her GI doc had the PA call me. They were going to put my daughter in the constipation clinic where the children see a psychologist to make sure they are adhearing to the plan for stool elimination etc. and the PA who would monitor their meds etc. I started asking questions like is the inflammation due to the constipation etc. The PA had me read the name of the blood test and the numbers. The test indicated that there was mild inflammation in the gut. She then said, "That changes things. I will have to talk with the doctor and get back to you." I haven't heard back from her so after my daughters surgical follow up appointment today, I will have to call the GI doc.
I have a 19yr old son:kiss: who had infant botulism at four months of age. We had a lot of struggles once he was released from the hospital. He was eventually diagnosed with constipation, peptic ulcer disease, generalized mild hypotonia, reactive airway disease, learning disabilities, dyspepsia, inflammation of the esophgus and duodenum just to name a few. He was very thin and had to have supplemental feeding in order to grow properly. I'm happy to say that all our struggles and hard work paid off. He is now six foot, two inches tall.:banana: Like my daughter and I, he also has bouts of low blood sugar where he gets real shaky and fatigued. Also like both my daughter and me, he has sleep issues. He had a nissan fundoplication with G-Tube placement when turned two years old. Had his birthday in an out of state hospital that year. There, they diagnosed hiim with severe delayed gastric empting. Back to the topic at hand. He had a G-Tube resection and removed the G-Tube when he was either 15 or 16 years old.
Hubby is one step away from frozen shoulder. The other shoulder is now acting up as well. :stinks:He is tired and I'm sure feeling overwhelmed with all that's going on right now.
I have another son in the Air Force who is over seas and just turned 21.:emot-dance: I was sad that he wasn't here to celebrate that special birthday with us. He is a wonderful Christian young man whom I am very proud of.
So as you can see, we have lots going on in our family. :ghug:Any helpful ideas or thoughts would be greatly appreciated. To date, it's been a long road. But, God is good and has been there every step of the way.
One more thing. My daughter and I have not had an endoscopy or colonoscopy. My daughters gut inflammation showed up on a blood test.
My mom had Lupus, fibromyalgia, possibly rsd as well as many other issues. She died at age 59. Too young if you ask me. Both of my parents have/had hypothyroidism and diabeties.
I would really like some help figuring things out with my daughter. She is not bouncing back from her surgery as would be expected.
Blessings,
Naturelover
