Hi, I was hoping to get some ideas on causes, advice or similar experiences. My apologies that this post is so long.
I have been suffering from abdominal pain on and off since May 2017. It initially followed what I thought was a bout of food poisoning, as my partner also had it.
The pain follows eating and was initially right in the area between my ribs. The pain came on about 20 minutes after I ate and pretty much lasted until the food had gone through my stomach about an hour and a half later. My stomach gurgled as the last of the food went through and the pain was gone. If I didn’t eat I had no stomach pain. Initially the pain was sporadic, and didn’t occur all the time, however, towards the end of last year, it was all the time, was worse if I ate more and the intensity of the pain had increased.
I have had two endoscopies which have not found anything and a colonoscopy which found some inflammation. My doctor called this ‘reactive ulcerative colitis’ and it was deemed non-chronic. He gave me some Mesavant, and I noticed a slight improvement in my stomach pain, however, the pain came back at the same intensity a short time later.
In October, I became increasingly breathless and went to my doctor who ordered a d-dimer test. The numbers came back elevated and I had a CT scan which found severe bilateral pulmonary embolisms. I was admitted to hospital for 5 days and put on Clexane injections for a few days, until I was switched to Apixaban tablets. Whilst I was on Clexane I again noticed an improvement, but the pain came back on Apixaban. My GP and specialists thought this was a coincidence.
They couldn’t find a cause for the PE, and I had a lot of blood work done. The first haematologist I saw, believed it was related to the ulcerative colitis, but my gastroenterologist said that it wasn’t actual ulcerative colitis and was only reactive colitis. After telling the haematologist about the abdominal pain, he ordered a CT scan which came back clear, with no issues.
I got out of the hospital and about a week later I experienced the worst stomach pain I have felt. I went back to the ER worried that something terrible had happened. I was in there for a week on strong pain killers, but they couldn’t work out what was going on. Whilst I was in there, I had a vascular surgeon look at my case, he pressed my stomach, looked at my blood work and concluded it wasn’t vascular. I think at this stage, my inflammation markers had decreased. I had another haematologist look at my case and she did some blood work, and again said I had minimal inflammation and said there was no cause that she could find for the PE.
During this stay, I had a number of ultrasounds, an MRA and X-Rays. They ruled out gallstones and liver disease. The only thing they possibly found was an issue with my Median Arcuate Ligament and they suggested it could be MALS. I had another ultrasound, where I had to breathe in and out and they couldn’t find any evidence of an issue with blood flow to my bowel. I went to a surgeon and he said I wouldn’t be a candidate for surgery to snip the ligament as there wasn’t an issue with blood flow. He did, however, say that a celiac plexus nerve block may be of use. I was given a temporary test injection of steroids twice and found some relief, but again, the pain came back fairly quickly.
I was also given Glyceral trinitrate to see if this helped as it might point to a vascular issue. I tried this however, at this point, my pain was quite bad and I couldn't tell whether it worked.
I also had a test for gastroparesis and my stomach emptied quicker than usual, however, my gastroenterologist said there is no pathology associated with this. At this stage, the relationship with my gastroenterologist had deteriorated after he questioned my use of painkillers, the only thing that was helping, and also questioned whether I have issues with avoiding work!!!
I went back to my GP and she said that we could try a short course of steroids as a test as vasculitis had been raised as a possibility. I took the prednisolone (50mg) for 5 days and it was like magic! There was at least a 50% decrease in my pain and I was able to have some semblance of a life for the first time in months. I started to taper off the steroids, however crashed an couldn’t get out of bed for two days at the start of this year.
I went back to hospital where the haematologist said my iron was low and the lack of energy was most likely due to this and a steroid crash. She ordered some blood tests, my inflammation markers were low, my white blood cell count was high-ish, but she said this was probably due to the steroids. She couldn’t find anything so took me off the steroids. She made mention of a rheumatologist, but said that she knew what they would say and this didn’t eventuate. At this stage she basically said there wasn’t much she was going to do. I was devastated.
Since this, to cut a very long story short, I am on 15mg of prednisolone. I am not on painkillers and the pain is generally well managed. However, there are times after I eat that I am uncomfortable. My heart beats fairly fast and I feel like I need to rest. I am loathe to go back on painkillers and tried the glyceral trinitrate spray again today, which seemed to help a little. In the past I also found that nifedipine also helped, although temporarily.
I'm just at a place where I am really struggling to eat because I am so fearful of the discomfort and that the pain might come back. So any help or advice would be appreciated!
Thanks so much