Chronic ongoing abdominal pain
Good morning all, hoping to get some information from CD or UC patients regarding their journey with either of these or any other IBD.
I have had abdominal pain and severe constipation for almost a year. Pain is primarily in the upper abd, pretty much ongoing with intermmediate both sides and under rib cage ranging from gnawing burning pain to sharp and barbed wire feeling pain that actually feels as if it's being pulled internally from right upper to left side.
I had a cholesysectomy in Nov advised biliary dyskenesia. Gall bladder was fine but removed due to primary biliary duct was the size of a coffee stirrer and removed as well. Due to continued pain, surgeon ordered CT-findings were severe inflammation and several air fluid level bowel loops in upper and lower bowel-stated indicative of enterocolitis. Three weeks later, gastro ordered a stat MRI full abdominal due to elevated alpha-feto-protein marker. MRI was stated to be completely normal and unremarkable.
Furthermore, according to lab and gastro office nurse, there was no alpha feto-protein test performed therefore no results of such. The only abnormality in labs was ASCA IGG was 55.9 (very high) (normal range for non positive is 0-20U) and abnormally low anion gap of 5 (normal 7-??).
Pain has continued and had actually gotten worse along with symptoms as noted above. After taking 2 meds for ulcers, anti spasmodic and Linzess for nearly 2 months my pain had finally started to ease up. - Until starting prep for colonoscopy and endoscopy. The pain has returned-it actually started during my prep for scopes. I am hoping my belly is just irritated from forcing my colon to cleanse for procedures.
Just had upper endoscopy and colonoscopy yesterday. The physician indicated both were completely normal (only a small polyp) and to followup with gastro in 4 months.
I am extremely frustrated and feel as if no one is listening to my concerns. The pain I am experiencing is real and some days to the point of nausea from the severity.
Any suggestions or stories similiar to mine would be greatly appreciated.
Thanks All.
I'm so glad that you reached out here,
. My heart goes out to you that you've been experiencing so much pain and frustration. It is very discouraging to feel that you are not being listened to, and I wish that you were having a better experience with your doctors. Please know that our community is here for you, and we believe you. I hope some of our community members here can reply and share their experiences with you.
Will you be continuing the medications you were taking now that the colonoscopy and endoscopy are done? I ask because it sounds like, for a period of time before your procedures, you were starting to get some relief on those meds. That being said, if you feel you aren't being listened to, taken seriously, or getting answers, you have every right to see a different doctor and/or get a second opinion. You deserve to have relief from the pain you've been in!
I'm hoping that as your body settles down from the prep for the procedures you get some relief again!
In the meantime, you might be interested in this article one of our advocates wrote about deciding whether or not to switch doctors, https://inflammatoryboweldisease.net/living/switching-doctors-decision. As well as this one about getting a second opinion, https://inflammatoryboweldisease.net/living/crohns-second-opinion.
Please don't hesitate to reach out here any time, whether you have questions, need to vent, or could use some support. Sending you gentle hugs. -- Warmly, Christine (Team Member)
Yes Christine, I have continued to take meds as prescribed. Have a follow up with gastroenterologist this week. Hoping to get some answers.
Thank you for words of encouragement.Hi
. It is good to hear that you had the colonoscopy and endoscopy and have the follow up this week. Do you know if a biopsy was done with the colonoscopy? I ask because a biopsy can be a great help in the diagnostic process for IBD. As you prepare for your next appointment this article on the diagnostic process for IBD might be helpful: https://inflammatoryboweldisease.net/diagnosis. Please feel free to keep us posted on how your appointment goes and to ask additional questions - this community is here for you. Best, Richard (Team Member) I'm crossing my fingers that you can get some answers from the gastro this week! And please don't hesitate to reach out any time. We are here for you! -- Warmly, Christine (Team Member)
Yes, removed a polyp an 8+ lesions and tissue samples from esophagus, stomach, small and large intestines.
hopefully the tissue samples can help you get some answers! As Richard mentioned previously, if you feel comfortable, please keep us posted. -- Warmly, Christine (Team Member)
I'm also glad to read that the doctor took biopsies. I just had a colonoscopy today, and my GI took multiple biopsies all along my colon. I'm so thankful he does this each time I have a colonoscopy since I have UC, am high risk for colon cancer, and at age 53, I say, "Check away, Doc!" I think you are definitely on the right path to receiving answers. Please update and let us know what answers the pathology report offers you. Best wishes as you wait!--Sincerely, Traci (UC-IBD Team Member)
