Unknown Bladder and Abdominal Issues

Unknown Bladder and Abdominal Issues

Posted by IrinaCarmen on Mar 2, 2018 6:17 pm

Hi, Nurse Linda! First, I wanna thank you so much for all your efforts here to answer all the questions and for your articles, I’ve found out many interesting and helpful things reading them! 


Now, I have a few questions and concerns and your advice would be very helpful! 


My boyfriend has been a c5 quad for 12.5 years and he’s 30 now. A very important thing to mention is that we both live in Romania, a kind of poor country, unfortunately governed by corruption and lack of interest in, well, everything. That is important because, unfortunately, we don’t really have physicians specialized on SCIs here. I have two questions and concerns, and they were both adressed to doctors with no positive responses.


One thing I’m interested in is a problem my bf’s been having since he can remember - after the injury, of course. A few times a day, he has some weird episodes - something he refers to as stomach aches, but what I think he means is that he has disconfort around the abdominal area. Also, at the same time, he feels dizzy and with a significant lack of appetite. For example, if he lies in bed, he needs a little time in the wheelchair before being able to eat, even if he’d been hungry for a while before, while feeling dizzy and having this abdominal disconfort. He went to different doctors along the years, did all sorts of investigations, including a CAT scan, and nothing abnormal showed up. But a few days ago, something changed. Because of a tight deadline at work, he only got a few hours of sleep during one night. He usually sleeps on his back for a few hours, then rolls on one side, then on the other. But on that short night, he was so tired he didn’t wake up to roll, so he slept on his back only. The next day he didn’t have that episodes and, surprisingly, he felt less tired than on a normal day - even if he’d worked a lot and slept very little! So my theory would be: I know the muscles on his abdomen are loose and don’t provide a proper support for his internal organs, so maybe something from the organs’ positions causes these episodes? He can’t sleep an entire night without rolling, so if that’s the case, is there any other solution? It might be something simple we don’t know, but as I said, we don’t really have doctors with such deep knowledge and experience on SCIs.


Another question would be about some pain he’s been having during the intermittent cathaterization process. He was recommended to do it four times a day, but for various reasons, he does it only in the morning and during the day, only if he does physical therapy or before going out. The baldder empties itself when it’s full, he just can’t control it and it only goes out what doesn’t fit in the bladder anymore - I know there are medical terms for that, it’s just that I’m not a native English speaker, so I hope you understand what I mean... He also has E-coli and he’s been having it ever since the accident and he doesn’t want long term antibiotics because he had severe side effects from them. Along the years, there were times when the cathater just couldn’t go in. The problem would go away by itself after a while, a few days at most. However, a few weeks ago he felt dizzy and weird after his morning routine and he thought it was something bowl related at first, but then he noticed he was feeling like that after the cathaterization process, inclunding when he was having it done during the day. So he switched to a smaller cathater and stopped feeling bad, but there are still times when even with the smaller cathater, it takes a while until it gets in, and he says whenever that happens, he feels something he believes it’s pain - can’t be sure because of lack of sensation. He does his routine either while sitting or laying in bed and nothing changes depending on that. Again, he did all sorts of tests, nothing abnormal came out. And we’re afraid it might come a time when the smaller cathater won’t be enough either. 


As a general info, he’s very physically active, he does physical therapy almost every day, he stands every day, stretches his legs and pulls weights and he also has electrical stimulation done, which helped improve muscle tone. 


Now, again, I know my questions are long and maybe twisted. But I wouldn’t ask them all online if we had the basic support in doctors and physicians here... 


Thank you for taking the time to read and, again, for all the amazing work you’re doing! We seriously need more people like you! 


P.S. And sorry if my English was poor at times...

Re: Unknown Bladder and Abdominal Issues

Posted by AskNurseLinda on Mar 4, 2018 8:02 pm

Hello, IrinaCarmen, It is nice to hear from you. I understand your concern for your friend. Sometimes finding answers can be a challenge no matter where you live.
You describe two distinct issues. Both deserve attention. It could be autonomic dysreflexia or orthostatic hypotension or even both. Autonomic Dysreflexia is an issue within the nervous system that can be quite dangerous. It requires medical attention to help control the symptoms. Orthostatic hypotension is a problem with blood pressure management when going into a sitting position.
Autonomic dysreflexia (AD) and orthostatic hypotension (OA) are both treatable but do require the assistance of a healthcare professional. AD can be affected by many triggers but attention needs to be provided to regulate the blood pressure when an episode occurs.
OA can be managed with elastic stockings and an abdominal binder with slower movement to become sitting because it takes some time for the blood vessels to accommodate a sitting position after a spinal cord injury. this eventually resolves but can reoccur later in life.
I have attached the link to some wallet cards which can be shared with your healthcare professional should they determine either or both of these problems are an issue.

Keep pushing for answers from your healthcare team. It is often difficult to find healthcare professionals who are specialist in spinal cord injury but the wallet cards will be a huge step forward. Nurse Linda

Re: Unknown Bladder and Abdominal Issues

Posted by IrinaCarmen on Mar 5, 2018 4:13 pm

Hello, and thank you so much for your answer!

Ever since my boyfriend and I got together, I started researching paralysis related matters on my own since I don't really trust our people. My research led me here - to the forum, to the Foundation's website - and I spent some time reading about AD and, of cours, your cards. I became kind of obsessed with it since I was shocked to find out neither my boyfriend, nor other friends of his also dealing with paralysis knew what AD meant. So I have lots of plans for awareness campaigns on the matter, and your cards are more than helpful, especially since doctors here aren't bad, they just... People with disabilities here have lots of struggles, mostly financial and accessibility related. Most of the times, it's difficult for them to even go...anywhere. So they don't go to the hopsital if their blood pressure drops, they just hope it will pass, unfortunately. One of my bf's friends died last year - turned out he had a fracture no one knew about, and I'm more than sure he had multiple episodes of AD, he just didn't know about it...

Anyway, on the topic: I measured his blood pressure multiple times today, after your mention of OA - including during physical activities. Being kind of obsessed with AD, I looked for signs and I know there might be silent AD, but he had no sign at all. If anything, there was this point while he was feeling dizzy when his blood pressure was really low. Right after transferring himself from bed to the wheelchair, his pressure dropped a little, but not worringly. However, no more than 5 mins later, he said he was feeling dizzy and I checked and his blood pressure suddenly dropped more than 20 units. As usual, nothing had to be done, he just got better by moving, stretching and continuing his activities. So I guess it's OA, right?

What still bugs me is that stomach ache of his. He says he has it...all the time, every day, and it is accompanied by dizziness, too. I mean, without laying back or doing anything extraordinary, just while rolling or while being at the computer and working. I didn't get the chance to take his blood pressure while this happens for no reason yet, but will do. He stretches and it passes, and a few minutes later, it's back and he has to stretch again and so on and so on. It's worse whenever he experiences OA or after his morning bowl and bladder routine, but not necessary after cathaterization during the day. And it's different from the pain he has when the cathather doesn't go in easy. It's not something that affects his everyday life - as I said, he stretches and it goes away, but I would just like to understand what that is about! And if there's something that maybe can be done about it...

Thank you, again, for taking the time to read and reply and for all your advices! heart

Re: Unknown Bladder and Abdominal Issues

Posted by AskNurseLinda on Mar 7, 2018 4:01 pm

It is so difficult to tell what is going on from so far away. Stomach pains could be due to an internal problem such as indigestion or ulcer but also spasms or gas or perhaps some other issue in the abdominal area. The only way to tell is to get a work up by your health professional. You might need to seek care at a major medical center or academic hospital. I know several spinal cord specialist from Romania so there are excellent institutions there. Getting access to them might be a problem but that would be the best route. You need to have a hands on profession to help you discern the issue. You are a great reporter but now it comes down to physical examination. Nurse Linda

Re: Unknown Bladder and Abdominal Issues

Posted by IrinaCarmen on Mar 7, 2018 4:10 pm

He's done all the work up we could think of, and yet the best answer he got was "there might be an affected nerve that's causing pain", without any treatament recommendation. Of course, we don't know all the doctors... I don't know if this is against any rules, but would it be possible to give us some recommendation on any of those SCI specialists, please? If it's against this forum's rules or something, I'll understand. smiley

Again, thank you for everything and for your amazing work!

Re: Unknown Bladder and Abdominal Issues

Posted by AskNurseLinda on Mar 8, 2018 7:59 am

If it is a pain problem, which often comes with spinal cord injury, there are medications that can help. Sometimes, the treatment is more difficult due to sleepiness and lethargy than the pain so you will need to make that decision. But there are stretching, which you are doing, and medication for spasms which can cause pain or neuropathic pain medication. Nurse Linda

Tag Topic

Subscribe to Topic

Would you like to be notified of updates to this Discussion Topic? Subscribe and you'll receive email updates of new posts.