Hi, this is my first time posting and I can not tell you how comforting and helpful this page has been for me and my husband. We were newly married when my husband was involved in a hit and run car accident in December 2022. He sustained a brain bleed (which effected his vision; peripheral vision for a short period) and suffers froma TBI.
It is almost a year since the accident , and we have been thrilled with his recovery. He regained his memory, built up his brain fatigue and returned to work in September. Although these months of recovery were not easy, we were just so grateful that he was alive. We are expecting our first child any day now, so that has been something positive to focus on.
Although, he has made a great recovery, we still lead a restrictive life for fear of triggering his brain fog. It usually comes on once a week, and we don’t know what sets it off. When ever it is triggered, he is incapacitated for the rest of the day/night. It is the gut symptoms that are the worst; he experiences extreme cramping (describing it as feeling like a twisting of the gut) and constipation for up to 10-14 hours. During this period he stays on the toilet as he does not feel comfortable anywhere else. He can not rest, and his brain fog can vary from mild to intense. Once he feels he has ‘cleared’ his bowels after hours of pain and discomfort, his brain fog and pain automatically starts reducing, he is able to sleep and when he awakes he is back to normal; including his bowel movements.
This happens once a week without fail. Nobody seems to have experience with this or understand what he is experiencing. The GP believes it is a constipation issue, and treats everything in isolation; never links the brain fog with the gut issues. To me constipation doesn’t make sense when he doesn’t have it outside of these set times. Anyone experiencing similar symptoms or have knowledge about what may be happening. We have tried many things with no success e.g. reducing his activities in a day or adding daily meditation/ mindfulness, more/less exercise, laxatives, diet etc.
Further info- when he is experiencing the above issues he also can experience other symptoms, that would suggest fight or flight mode is being triggered, but these symptoms are not always present and have decreased over the last few months; dry mouth, heart rate can increase, thermo regulation issues at times (sweating profusely or shivering).
Thanks in advance for any replies. 😊
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Stephaine
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If the symptoms are like clockwork what does he do on that day. Are there any differences with this day and other days.
I had loads of gut issues, one cause of symptoms was an automatic reaction to light, both sunlight and exposure to LED lights.
The automatic reaction is the fright/flight response. When this happens blood is pulled from the gastric system to the muscles and the stomach increases acid production.
I found that if I reduced and stopped eating acidic foods such as apples, oranges, tomatoes etc the stomach issues reduced but did not stop. It's the same for spices even pepper/peppers, chilies, curry, vinegar, herbs etc.
Today I still have gut issues, but my brain injury issues have recovered.
The other thing that also affects my guts is damage to the spine, herniated discs, scoliosis etc because the nerves going to the gut are inhibited etc.
A bland plain diet helped me as well as finding the trigger.
We are all different so try and identify what is different about the days when he is affected compared to other days.
Do you have a particular type of food on that day or is there some sensory issue triggering a stress reaction.
Good luck hope you sort it out.
It may be worth getting an endoscopy, camera into the stomach, to have a look.
They found my duodenum was corroded from too much stomach acid so as well as pain I was not digesting my food and going to the loo took 2 or three days. (too much info, sorry)
Hi StephanieIt is not uncommon for people to have digestive issues with a bi.
From what I understand many processes in the body involve various hormone pathways - we have a lot more hormones than testosterone, estrogen, etc.
Often the hypothalamus takes a hit because it's a dangly bit.
Some people I know had luck seeing a bi literate naturopath who is very interested in this kind of thing.
PinkV has already given you some ideas about the brain fog piece.
I would suggest keeping a log of activity, environment, and weather, and see if you can find any relationship.
It also may help if he paces differently the rest of the week. He may just get overloaded and his system says enough!
Also check out help for the toilet issue... find out is something like Restoralax can help him - its a PEG product to promote regularity, or perhaps Lactulose, which is a product that moves things along - generally recommended here for people who have been backed for a fee days... but it may be ok if he knows what's coming - ask your pharmacist. My concern is the long term consequences of straining - over and above the absolute agony. If not these, your pharmacist may have some ideas, or Headway m8ght - you really can ask them anything.
For myself if I am stressed by anything it shows up in the gut.
The other thing that may help is squared breathing to calm the fear/fight/freeze response, which may be being triggered by something not expected as the brain /body may be mixing up signals.
Hope you can figure it out. We do have to do a lot of our own figuring out.
Hello Stephanie, welcome to our group and I do hope we can help, your husband has come a long way, I have problems the other way with a bout of diarrhoea usually once a week, I have had investigations done to no avail and personally I think mine is due to medications, possibly the pain relief tipimarate as I didn’t have the problem before. Mine is aggregated by spices foods excess veggies etc so I have to be careful with diet, constipation can be debilitating, I managed a care home and some residents collapsed due to constipation, regular medication to prevent is the best treatment, like lactulose which won’t make you go just soften the stools, ask the gp for regular treatment to reduce the anxiety and stress around the bowel movement. On the other hand Stephanie, congratulations on your upcoming new arrival, you will have to let us know, it will be our youngest member lol, lots of luck love Alice xx
hi Stephanie welcome to the group .. like everyone has said TBI can effect all of our body . It controls everything …. My gut has also changed but for me it was a positive as I had all my life struggled with constipation and after BI I’m pretty much regular daily .. and that’s 3 years nearly .. I’m so pleased your husband is improving so well and hopefully the gut issues will settle but if not go back to the GP to get it checked out .. good luck with your soon to be little one .. look forward to hearing about it .. love sue x
It is certainly worth making a food and activity diary to accurately assess the triggers but bear in mind that he may have Dysautonomia, the upset to the Sympathetic and Parasympathetic nerves that go everywhere in the body and especially I the gut. It is not uncommon for head injury sufferers to have their autonomic nerves disturbed and they can fluctuate between constipation and painful wind to explosive diarrhoea.
There are things that can help, apparently stimulating the vagus nerve etc. some by breathing exercises (see Wimhoff and others) some advocate cold water swimming for the similar benefits.
It does sound like it may be diverticulitis which I suffer from. Constipation & diarrhoea, often in the same day.
Most people get it but usually older people. But it does affect younger people too. The fight/ flight response does aggrevate it and could in fact be the cause of the damage.
It involves a camera, some gell and .... well..you can guess the rest.
Hi Stephanie, great response to this so I’ll keep this short, the gut being the so called second brain because of the neurological pathway connection between the two, a tbi is a lot of anxieties and emotions fight or flight mode and everything it’s all bound to twist you up if you know what I mean? Anyway I didn’t feel healthy for 3/4 years after tbi for different reasons but my gut never felt right, I do now eat healthy and I make a lentil and dried bean dish a mix of lots of different kinds to last a few days of lunch or suppers daily There are lots of recipes online. It’s really settled my gut maybe look into it. They do make you gassy, Are you familiar with the old rhyme beans beans good for your heart the more you eat the more you ! It’s all true lol
Firstly it's great news to hear you are expecting and so well done to your husband for how far he has come.
I don't have his issues but do have something a bit weird going on with brain and stomach since my head injury. No longer does my digestive system fire the right messages to my brain to tell me when I am hungry. So I don't plan or eat well on schedule.
When I asked the consultant about it he could not explain it. Brain injury is so unique for everyone and more research is needed too. I hope you get some help through this forum like I have in the past.
yes gut issues are super common as has been said. I was recommended to take NAC supplement this has helped heaps. I also take Lions mane for clarity and swear by it x was actually like an overnight improvement! All the best
Hi since brain injury I have had alot of issues arround food gut and brain. Bear with me as I do tend to waffle but I will get to the point.First I completely lost my sense of taste and when it returned it was different so any hot food mainly meat my brain thinks there's something wrong with it and I struggle to eat it.
Though my gut now doesn't seem to like red meat and It causes me diarrhoea within a couple of hours of eating yet I can't go at other times. So I don't eat red meat but it hasn't ended the problem as end up quite frequently in the same situation as your husband.
My gp gave me movicol and that has helped a bit but not resolved issue. I wouldn't know if brain fog was related as my brain injury is such I have problems with memory, executive disfunction, fatigue twenty four seven. Though BI and gut problems are always ten times worse when my batteries are running low. Fatigue is one of the hardest things to manage.
I have had cameras every which way way and an MRI and they can't find the reason.
So now I am literally keeping a diary and avoiding everything that has me stuck on the loo.
Whilst he hasn't got rid of the problem it maybe worth mentioning that IBS mebeverine medication has helped with the twist like cramping. I was also getting pain where my ribs meet at the bottom of rib cage and 40mg 2x a day omeprazol stopped that. I am still taking now on 40mg once a day.
It maybe worth noting since Brain i jury that my brain no longer tells me when I am full, hungry or thirsty.
So may need to watch out he's not under eating overeating and same for drinking too much too little.
Definitely recommend a food diary as maybe it will help you see a pattern but also whoever you end up being referred to willalways send you off to do a food diary so saves on appointment and time wasting.
Hope you find the answers and your husband feels better soon xx
Hi all! I am so so appreciative of all these replies, and the time you took to write them and help us in some way. All of your individual advice has been insightful and given us good direction for our next steps. I am sorry for the delayed reply; our little girl arrived soon after I had sent that message. We are on cloud nine. She has been our little miracle baby that gave us something positive to focus on throughout husbands’ recovery time. That positive focus helped/ helps to overcome the bad days also . Thanks again 💕
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