newly diagnosed and meds not working
Hi I was diagnosed with CD based on a pill cam which I had on 4/10 and received the diagnosis and started meds on 4/17. Prior to testing and diagnosis I began having pain in February which was originally thought to be an IBS flare up. The pain continued and after a trip to an urgent care and two ERs I was finally admitted the third time I went to the ER. At the time I had a bladder infection/UTI pyelonephritis, enteritis/abdominal pain, vomiting, nausea, weakness, candida in the esophagus and some complications from endometriosis. Prior to hospitalization I was on bactrim and flagyl. IV antibiotics were continued for the first few days then they had to start a potassium IV in addition to giving me medicine for rectal bleeding. Essentially I was a mess.
The endoscopy perfomed in the hospital showed gastritis and candidal esophagitis; the colonoscopy found grade II internal hemorrhoids. The hospitalization was from 5 Mar-10 Mar. I was allowed to go home provided I saw at least two of my doctors (PCP and OBGYN) within 1 week. I was then referred to a infectious disease doctor to clear up the issue with the candidal esophagitis. I have since been told my immune system is good by that doctor to now be diagnosed with CD based on small ulcerations mainly in the ileum & jejunum and superficial ulceration in the proximal duodenum. I started with budesonide 9 mg per day for two weeks only to be told to do 9 mg for 4 weeks because the pain isn't going away. They have since added pentase 2000 mg per day with 4 pills in morning and 4 in the evening.
After getting the nausea and horrible indigestion to be less frequent I tried things like baked tilapia and got fancy and had a veggie burger with brown rice and apparently that was not a good idea. Since February I have not enjoyed a meal. I am and have been juicing for about 2 weeks. It really is keeping me hydrated and from going to the hospital but I am concerned because even having had no solid food just juices, Ensure and homemade mango smoothies I am still having pain. The majority of my pain is in the Left upper quadrant. I am in pain daily several times a day. I also have pain in the right lower quadrant. Not taking anything in may only land me back in the hospital but I am not sure of what to put in my body to help get this under control. I juice celery, carrots, apples, pears mostly.
Right now aside from abdominal pain I have a really sore throat and swollowing is not fun but the esophagitis was no longer seen on the pill cam. Is it possible for that to recur due to CD? Also I am seeing a hematologist on Wednesday just to make sure my nocturnal seizures and the pain I have in my hand in addition to occasional Raynaud's type issues with my hands and feet are not related to lupus. Wow! That just seems like too much but I would love some input, insight, advice, words of wisdom or just to hear how some of you are making it thru the day to day and keeping yourself going. I am just trying to keep going because I know this will pass but good grief when?!? Sorry for such a lengthy post. I appreciate any of you who take the time to read it. Thank you! Also I am a mother of two with a husband who is on a perpetual contract in Kuwait with no end of contract in sight. So stress less is a great obstacle for me.
Hi I was diagnosed with CD based on a pill cam which I had on 4/10 and received the diagnosis and started meds on 4/17. Prior to testing and diagnosis I began having pain in February which was originally thought to be an IBS flare up. The pain continued and after a trip to an urgent care and two ERs I was finally admitted the third time I went to the ER. At the time I had a bladder infection/UTI pyelonephritis, enteritis/abdominal pain, vomiting, nausea, weakness, candida in the esophagus and some complications from endometriosis. Prior to hospitalization I was on bactrim and flagyl. IV antibiotics were continued for the first few days then they had to start a potassium IV in addition to giving me medicine for rectal bleeding. Essentially I was a mess.
The endoscopy perfomed in the hospital showed gastritis and candidal esophagitis; the colonoscopy found grade II internal hemorrhoids. The hospitalization was from 5 Mar-10 Mar. I was allowed to go home provided I saw at least two of my doctors (PCP and OBGYN) within 1 week. I was then referred to a infectious disease doctor to clear up the issue with the candidal esophagitis. I have since been told my immune system is good by that doctor to now be diagnosed with CD based on small ulcerations mainly in the ileum & jejunum and superficial ulceration in the proximal duodenum. I started with budesonide 9 mg per day for two weeks only to be told to do 9 mg for 4 weeks because the pain isn't going away. They have since added pentase 2000 mg per day with 4 pills in morning and 4 in the evening.
After getting the nausea and horrible indigestion to be less frequent I tried things like baked tilapia and got fancy and had a veggie burger with brown rice and apparently that was not a good idea. Since February I have not enjoyed a meal. I am and have been juicing for about 2 weeks. It really is keeping me hydrated and from going to the hospital but I am concerned because even having had no solid food just juices, Ensure and homemade mango smoothies I am still having pain. The majority of my pain is in the Left upper quadrant. I am in pain daily several times a day. I also have pain in the right lower quadrant. Not taking anything in may only land me back in the hospital but I am not sure of what to put in my body to help get this under control. I juice celery, carrots, apples, pears mostly.
Right now aside from abdominal pain I have a really sore throat and swollowing is not fun but the esophagitis was no longer seen on the pill cam. Is it possible for that to recur due to CD? Also I am seeing a hematologist on Wednesday just to make sure my nocturnal seizures and the pain I have in my hand in addition to occasional Raynaud's type issues with my hands and feet are not related to lupus. Wow! That just seems like too much but I would love some input, insight, advice, words of wisdom or just to hear how some of you are making it thru the day to day and keeping yourself going. I am just trying to keep going because I know this will pass but good grief when?!? Sorry for such a lengthy post. I appreciate any of you who take the time to read it. Thank you! Also I am a mother of two with a husband who is on a perpetual contract in Kuwait with no end of contract in sight. So stress less is a great obstacle for me.
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