Hello –
I first want to thank this forum and everyone for their stories and input. I have been reading this forum before even being diagnosed it has been so helpful.
Does anyone have any information or tips for getting though this surgery and having a quick recovery? I am very nervous hoping that surgery is the right decision. Also hoping surgery will finally give me relief. I am ready to get my life back.
Here is my story I am, sorry it is so long. I am a 31 year old female and from as far back as I can remember I have always had stomach issues. Even as an infant I was having colonoscopies. At 12 I had an emergency appendectomy, which was actually discovered during exploratory surgery. My symptoms were not the normal symptoms and they couldn’t see my appendix on the ultrasound due to if facing backwards. At 13 I was diagnosed with IBS. I always suffered with stomach pain and diarrhea. September 2011 I started having extreme upper stomach pain. It would take my breath away and would wake me up multiple times a night every night. After a visit with my GI I was sent for an ultrasound and told my gallbladder was to blame. I had it removed right away. The surgeon told me he was surprised at how much sludge and stones were in it. About 6 months later a different extreme pain was back with vengeance. They first sent me for a nuclear test to see if it had to do with my recently removed gallbladder. That test did not show any issues. Then I was sent for an ultrasound and a ct scan. The ct scan indicated Crohn’s Disease and wall thickening in the terminal ileum, inflamed bowel loops, multiple enlarged lymph nodes and Meckel’s Diverticulum. So a colonoscopy was scheduled to see if my doctor could get a positive Crohn’s biopsy. The colonoscopy was unsuccessful as my ileocecal valve was so inflamed they could not get the scope through. While in between scheduling the next test I got very sick. I lost 10lbs in a week was in even worse pain (which is very bad) and was running a fever. December 2012 my doctor told me to meet him at the hospital. Blood work showed my inflammation levels were through the roof. I was admitted put on IV steroids and bowel rest for the next 4 days. At this point they were saying it was Crohn’s was the cause we just still needed to get a positive diagnosis. Once released I was put on 40mg of prednisone (which I was on for over 3 months, NEVER AGAIN) and sent to get IBD blood work done with prometheus labs. The blood work came back negative. My GI told me the test was not always accurate. I was then sent for another CT scan and an MRI of my liver because my blood work showed extremely elevated liver enzymes. Then I was referred to a GI Specialist to do a balloon enterography in order to open the valve to allow the scope through. They were able to get biopsies and see many ulcerations in my ileum. February 2013 I was officially diagnosed with CD. My doctor said I have probably had it my whole life just undiagnosed. After a month of trying to get approved for meds my insurance finally approved Humira. I was hesitate about getting on it but at this time I was desperate to start feeling better. My doctor informed me that if the inflammation and wall thickening in my ileum was being caused by scar tissue then no medication can fix it and surgery would be the next step. April 2013 I started Humira. It definitely helped with the pain although it didn’t fully take it away. The non-stop infections caused by Humira lowering my immune system caused me to have a love hate relationship with it. June 2012 I started bleeding bright red blood with every BM. So yet another colonoscopy was scheduled. This colonoscopy showed my ulcerations had gotten better and as far as my doctor was concerned I should be feeling fine. Well I wasn’t feeling better. This disease has caused so much frustration for my family and I. The pain and exhaustion was just running and ruining my life. All this time that I have been going through this I had been suffering through they pain. My doctor would only prescribe me a 2 week supply of 5mg Percocet here and there as he said, “even the best of us can become addicted”. This makes me so upset, as I am suffering everyday. He knows I am clearly not making up the pain I am going through. I understand his concern but suffering everyday is not what I call quality of life. I am a business owner and many days I would have to shut my office door, lay on the floor in the fetal position with a heating pad and breath my way through the pain. I would have to ration out my prescription and would make a 2 week supply of 5mg percocets last me a month. September 2013 I decided I needed to go back to the doctor. If I was risking other health issues by taking Humira and that was not working then it was time to figure out a new plan. I decided go to a new GI doctor for another opinion. I brought all my test results to my new GI. I told him where I was having pain and after an examination he told me I had a mass in my lower right quadrant. Which I had always felt there but my former GI told me it was a hernia that one day may need surgery. The mass has always been very sensitive to touch. If my cat were to jump on me and hit that area it would bring me to tears and the pain would radiate up my body and last for a good 15 minutes. My new GI decided a CT scan and blood work was need right away. The new CT scan results showed there is abnormal dilatation of small bowel loops within the upper and mid abdomen with evidence of significant wall thickening of loops of small bowel just distal to this segment. The findings are compatible with segmental enteritis with a partial small bowel obstruction. So this whole time the mass in my LRQ was my intestines. My blood work came back only showing low iron but noting to be concerned about. My new GI called me and told me it was time to meet with a surgeon. He said it is best if I plan the surgery so that one day I would not have a complete blockage requiring emergency surgery. On October 2nd, 2013 I met with one of the top colorectal surgeons in my area. He confirmed that surgery was necessary. The soonest he has open is October 29th 3013. He doesn’t want me to wait that long so his patient coordinator is trying to move things around to get me in asap. The past few days I have been waiting by the phone ready to find out when I will be brought in to have my operation. The suspense of not knowing has me anxious.
Thank you for listening =)
I first want to thank this forum and everyone for their stories and input. I have been reading this forum before even being diagnosed it has been so helpful.
Does anyone have any information or tips for getting though this surgery and having a quick recovery? I am very nervous hoping that surgery is the right decision. Also hoping surgery will finally give me relief. I am ready to get my life back.
Here is my story I am, sorry it is so long. I am a 31 year old female and from as far back as I can remember I have always had stomach issues. Even as an infant I was having colonoscopies. At 12 I had an emergency appendectomy, which was actually discovered during exploratory surgery. My symptoms were not the normal symptoms and they couldn’t see my appendix on the ultrasound due to if facing backwards. At 13 I was diagnosed with IBS. I always suffered with stomach pain and diarrhea. September 2011 I started having extreme upper stomach pain. It would take my breath away and would wake me up multiple times a night every night. After a visit with my GI I was sent for an ultrasound and told my gallbladder was to blame. I had it removed right away. The surgeon told me he was surprised at how much sludge and stones were in it. About 6 months later a different extreme pain was back with vengeance. They first sent me for a nuclear test to see if it had to do with my recently removed gallbladder. That test did not show any issues. Then I was sent for an ultrasound and a ct scan. The ct scan indicated Crohn’s Disease and wall thickening in the terminal ileum, inflamed bowel loops, multiple enlarged lymph nodes and Meckel’s Diverticulum. So a colonoscopy was scheduled to see if my doctor could get a positive Crohn’s biopsy. The colonoscopy was unsuccessful as my ileocecal valve was so inflamed they could not get the scope through. While in between scheduling the next test I got very sick. I lost 10lbs in a week was in even worse pain (which is very bad) and was running a fever. December 2012 my doctor told me to meet him at the hospital. Blood work showed my inflammation levels were through the roof. I was admitted put on IV steroids and bowel rest for the next 4 days. At this point they were saying it was Crohn’s was the cause we just still needed to get a positive diagnosis. Once released I was put on 40mg of prednisone (which I was on for over 3 months, NEVER AGAIN) and sent to get IBD blood work done with prometheus labs. The blood work came back negative. My GI told me the test was not always accurate. I was then sent for another CT scan and an MRI of my liver because my blood work showed extremely elevated liver enzymes. Then I was referred to a GI Specialist to do a balloon enterography in order to open the valve to allow the scope through. They were able to get biopsies and see many ulcerations in my ileum. February 2013 I was officially diagnosed with CD. My doctor said I have probably had it my whole life just undiagnosed. After a month of trying to get approved for meds my insurance finally approved Humira. I was hesitate about getting on it but at this time I was desperate to start feeling better. My doctor informed me that if the inflammation and wall thickening in my ileum was being caused by scar tissue then no medication can fix it and surgery would be the next step. April 2013 I started Humira. It definitely helped with the pain although it didn’t fully take it away. The non-stop infections caused by Humira lowering my immune system caused me to have a love hate relationship with it. June 2012 I started bleeding bright red blood with every BM. So yet another colonoscopy was scheduled. This colonoscopy showed my ulcerations had gotten better and as far as my doctor was concerned I should be feeling fine. Well I wasn’t feeling better. This disease has caused so much frustration for my family and I. The pain and exhaustion was just running and ruining my life. All this time that I have been going through this I had been suffering through they pain. My doctor would only prescribe me a 2 week supply of 5mg Percocet here and there as he said, “even the best of us can become addicted”. This makes me so upset, as I am suffering everyday. He knows I am clearly not making up the pain I am going through. I understand his concern but suffering everyday is not what I call quality of life. I am a business owner and many days I would have to shut my office door, lay on the floor in the fetal position with a heating pad and breath my way through the pain. I would have to ration out my prescription and would make a 2 week supply of 5mg percocets last me a month. September 2013 I decided I needed to go back to the doctor. If I was risking other health issues by taking Humira and that was not working then it was time to figure out a new plan. I decided go to a new GI doctor for another opinion. I brought all my test results to my new GI. I told him where I was having pain and after an examination he told me I had a mass in my lower right quadrant. Which I had always felt there but my former GI told me it was a hernia that one day may need surgery. The mass has always been very sensitive to touch. If my cat were to jump on me and hit that area it would bring me to tears and the pain would radiate up my body and last for a good 15 minutes. My new GI decided a CT scan and blood work was need right away. The new CT scan results showed there is abnormal dilatation of small bowel loops within the upper and mid abdomen with evidence of significant wall thickening of loops of small bowel just distal to this segment. The findings are compatible with segmental enteritis with a partial small bowel obstruction. So this whole time the mass in my LRQ was my intestines. My blood work came back only showing low iron but noting to be concerned about. My new GI called me and told me it was time to meet with a surgeon. He said it is best if I plan the surgery so that one day I would not have a complete blockage requiring emergency surgery. On October 2nd, 2013 I met with one of the top colorectal surgeons in my area. He confirmed that surgery was necessary. The soonest he has open is October 29th 3013. He doesn’t want me to wait that long so his patient coordinator is trying to move things around to get me in asap. The past few days I have been waiting by the phone ready to find out when I will be brought in to have my operation. The suspense of not knowing has me anxious.
Thank you for listening =)
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