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While the topic of IBS is rather personal in nature sharing my son’s story here is the hope it will help someone else out there so they don’t experience the same added conditions. Early symptoms were directly correlated to stressful events with a change in bowel habits leading to a failure to thrive diagnosis. If that current PCM had stayed that would have been the end of the medical work up as he said labs were unremarkable even with some lows and highs. Though that PCM left and another one came wanting my son to see a specialist GI at the university. With continued symptoms us not having made the stress connection fully we took the recommendation. Which brought on a request for more labs and suggested we were looking at IBD. As there had been some inflammation in his previous labs. Though we were mislead those labs showed it was inflammation in the colon but the test was in the arm so couldn’t say where in the body there was inflammation at high yet no fever present. We had to learn that from a nutritionist which was more helpful in treating symptoms and recovery from that same GI’s care. We took the recommendation to do an endoscopy and colonoscopy before understanding the labs as they had actually improved when his stress was less and was back home from a week long stressful visitation. So, had we understood the labs and our PCM assisted us with that we shouldn’t have done anymore tests at that point as it was the several labs done in just a few months had made him anemic and diagnosed nothing as IBD can only be diagnosed with biopsy of tissue from the area. Which when they did do it came back as listing only possible but listed could be an infectious process or something not listed too. Though the risks for the procedure are explained to you and I myself his mother had the procedure done twice please understand your labs and the risk to this kind of testing. After many months of slow to put back on weight loss of ten needed lbs. after the labs, procedures and an MRI that came back normal his PCM said the procedure can put in too much air creating a burst in the colon or leaky gut. He didn’t add with the MRI that diagnosed nothing two weeks later because that isn’t done with a biopsy the toxic cocktail of barium sulfate you drink before the MRI most likely got out of the track creating even more issues. If you look up the symptoms on that they were even more troublesome then his stress driven flares that yes make you not absorb for several days creating weight loss from too much acid shutting down villi from absorbing the nutritionist taught us this body function information so requires a special diet and keeping well hydrated at home care until healed 4 days or so. Though the damage from the procedures and MRI drink created even more bother some symptoms if you read our cells take 7 to 10 years to replace throughout the body. Which would be the time frame you might expect for that toxic material to continue to be purged from your body if it leaked out of the colon from damage or leaky gut being stretched out. Much of this was being learned back in 2015 when my son was undergoing this care. I hope more have learned from this poor care or poor recommendations too. Please get a second opinion and consider symptoms before such a procedure reading through all of the risk factors. Be involved in learning about your symptoms and the best treatments for them. As we did from a recommendation of reading on where doctors and patients can read the latest information on diagnosing conditions and treatment options. We were fortunate to have the nutritionist support on his treatment plan of stress reduction and diet changes. As we read many of the study reports on the effects of medication. If you look for example back then treatment for IBD came with many side effects that were worse then the short term stress driven symptoms he had. As well the studies often showed the placebo effect was similar to going into so called remission or whatever it was in the track had passed by and resolved it self. As there are many things that can create digestive change in bowel habits. Getting allergy or intolerance testing is less risky as well as doing a diet of avoidance has less side effects too. We did a journal keeping track of food, bathroom habits and symptoms and checking for a temp. or fever with spells not finding that was the case but stress did correlate. Which can be a very common reaction to the flight or fight being invoked during stressful situations. Which was my son’s trigger to his symptoms. We sought legal assistance but that didn’t come soon enough or address the situation so he is struggling to this day. He was allowed to participate in what treatment he choose to accept after we learned we together mother and son needed to educate ourselves before just blindly taking such recommendations with our good health insurance. We read in teens patient rights that teens 14 years old often picked the same treatment plan in case studies as adults did so he was well within his rights to do so at 15 years old. As his internal medicine doctor later said no one is going to make you do anything as you are the one that takes on any risks. His too much acid was given a prescription for adult strength anti-acids which now there is a lawsuit out on. It is good he choose to take it for a few months only as found it made him worse because you need acid to digest and get the most out of your food. What we did learn was when he knew there was going to be a stressful situation coming up he reduced the food acid he drank and ate that day so his symptoms were less. That worked well for him until he got to reliant on that method and it was difficult to reintroduce those drinks and food with more acid back into the diet. So remembering short term help and then back to a balanced diet is important. As well as stress reduction some type of relaxation routine is most helpful like listing to relaxing music, taking a bath, doing some helpful reading, or breathing exercises. I hope this helps another parent and child out there read some of the symptoms of that toxic exposure if you had more symptoms after an endoscopy or colonoscopy it might be from a similar exposure. Even with our PCM suggesting this is what happened we were not assisted in any malpractice with the specialist. The hospital did stop sending patients to that one and he left that university too. Though no one expects to be made worse off after medical care. Unfortunately this is not the only times that occurred. With labs not being the way to diagnosis IBD he stopped agreeing to those checks as even when was high a couple of time he ran no fever so was not out of control. Even if a fever that too is a normal body process doing its job that yes we monitor for how hot and how long that goes on for care and treatment but we all have what is most of the time needed in our medicine cabinets already. So be mindful of side effects of all care, drugs recommended, procedures and even labs. No one wants to go in healthy and months later be anemic the kind where cells had to make new ones too quickly so are small in size with no diagnosis from too many labs. Patients have rights and teens and younger patients are certainly included in that. Much has been learned about all of this and gut flora too which continues to help us all when we know more so educate yourself and participate. I will say some doctors are not used to that and don’t really like it but it is our right to do so. As I had to tell the same GI specialist that the nutritionist had helped us learn he had prescribed toxic levels of iron to help with the anemia and zinc to help with low zinc that can actually create the two most common IBD symptoms of diarrhea and fever. He was surprised to hear we knew that and stammered oh, well he was only meant to be on that level for a short time. Yet even that appointment he left it as him to be still taking it in the notes. Thankfully the nutritionist saved us from my son having those symptoms yet too. I hope this gives you cause for learning more too. I had thought it would be good for my son to write this someday as he read stories from others to learn and had empathy for their stories so I know he would want to help. He just hasn’t been able to live a normal life for way too long due to the root cause of his stress which is something we fight to this day. Medical care shouldn’t have to be a place to fight too but it became that way when he was not being made better but worse off. Mother and Son became a team!

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