Long term complications - intimate issues

[Mayfly]

Hello all

Some 7 years ago, I developed issues with an upset stomach after eating. I would eat at abut 1.00 and then, no matter what I ate, at 1.30 I would have to rush to the toilet. I thought it was due to what I was eating so I tried every diet possible and sometimes that seemed to work, sometimes it didn't, I put it down to hormones, rushed eating, medication - so many things. All my medications have pretty much as the number one side effect "gastro intestinal" problems.

Fast forward to beginning of COVID, I was due an examination which was cancelled. Recently, my doctor started up the process again and I went for a consult. By this time I had managed to get my eating to the point where I have a small breakfast, a protein shake for lunch and I eat normally in the evening. This stops the diarrhea but often I still need to go urgently about half an hour after eating at lunchtime. The consult was not very happy about my eating arrangements and suggested that we might be looking at automatic nerve nephropathy. I had no idea that this could be the cause but I also now have issues with emptying my bladder. I thought that this was due to menopause and old age. I also now have hooded eyes which is apparently a sign of nephropathy and also a loss of sensation in my tongue. I had an episode of Bell's Palsy which is not going away and so I assumd that the issues with my motuh were due to that. Instead, it looks as though this is all part of the same problem. I feel like my face is like melting ice cream.

I have been put on Ozempic and then moved to Trulicity to cope with the shortage but now I am not on either. Everytime I inform the doctor that I can't take my medication, he responds with, "You're on such a small dose, it won't matter" even though I am on a 1.5 dosage. I began losing weight, from both the eating less and the medication which is wonderful but I am suffering from depression now as I can't get my trulicity and I am frightened I will start to put on weight again. I am doing lots of exercise and cutting down on my food as much as possible. I recently googled a whole load of stuff and it seemed to indicate that my sugar levels will go up with less food, which I don't understand. I don't know how else to maintain the weight loss.

The issue is this : I know it's not my doctor's fault that there is a shortage of Trulicity but I feel that there is a total apathy about treating me. He often says, "Oh, there are pharmacists who have it, you just have to ring around" whilst not understanding that I am very limited as to which pharmacists I can get to due to not having a car and working 3 jobs. I am utterly depressed now. I have no interest in maintaining my health if I am facing complications like incontinence. I don't understand why I wasn't warned that this could have been the reason 7 years ago, when perhaps I might have been able to change things (although my control was excellent back then. These long term issues seem to have happened with no real causation at all). I am beyond wanting to help myself. I want to be thin and I will do anything to maintain the weight loss. I am angry about the medication shortages and feel that there should be some sort of effort to shut down the 100's of weight loss clinics who advertise that they can give people this drug. I feel there is a push from the NHS for us to find our own sources of the medication but at £100 a time (I've seen one site advertising this) I can't afford this and I don't see why I have to).

I don't know what answers I can find here, I am assuming that there is nothing to do, that I will have to face a continuing decline with countless major health concerns.

I don't think I have the mental strength to do that.

 

[SimplyJason]

Hi there Mayfly, first of all I would like to assure you that I know from first hand experience about depression and the vicious circle that also does with blood sugar's, double bonus, not. I myself am T1 for 54 odd years, now 56.

It sounds like you have battled through quite a challenging and complex list of health problems, and I will do my best to help guide you. Firstly, it is very important to note that you have been so resilient in putting up with these symptoms over the years. The persistence that you have had toward trying to get answers and making adjustments to your lifestyle has been an effort that is to be commended, especially with the difficulties you have gone through with your gastrointestinal issues, potential autonomic neuropathy, challenges related to diabetes management and let's not forget your GP.

Understanding Your Condition
It appears that autonomic neuropathy may be an important underlying etiology of your symptoms. This is a condition affecting a lot of bodily functions and it may explain your symptoms with the gastrointestinal and bladder. The onset of your symptoms around the time of your diabetes diagnosis has the potential for a comorbid process in your diagnosis, as autonomic neuropathy is one of the complications of diabetes.

Medications/Weight Gain
I know that running out of your Ozempic and Trulicity must be very frustrating. For you, it means poor potential diabetes control and the associated complications. It is understandable that you feel very alone and anxious in this situation, especially about the weight issue and controlling blood sugar.

Recommendations and Next Steps

Alternative Medications and Strategies
Talk to your diabetes team about the possibility of other available and appropriate medications. There are a couple of other ways to manage blood sugars in diabetes, and your diabetes team needs to work with you toward a solution that might be accessible and effective.

Nutrition and Diet
It appears that your current meal plan is managing your symptoms sufficiently, but it's important that the diet is a nutritionally complete one. A visit to a dietitian who specializes in diabetes might result in an even more balanced diet that respects your gastrointestinal sensitivities.

Mental Health Support
It is clear that chronic stress and health issues are really getting you down. Speaking with a mental health professional could help you manage your depression and anxiety. Really, CBT and other forms of counseling are quite effective in dealing with chronic health conditions.

Exercise and Lifestyle
Exercise is terrific, both for mental and physical health, but this needs to be balanced with adequate nutrition and rest. You may find it helpful to see a fitness trainer experienced with patients who have diabetes in order to get some more personalized advice.

Advocacy and Resources
Shortage of medications is a systemic issue, but you may wish to research potential sources or whether there are patient assistance programs that some drug manufacturers may offer. Otherwise, your provider might have recommendations on how to work around these shortages.

Conclusion
Do remember that you are never alone. There are resources and people you can connect with who are just waiting to step in and help you through these challenges. Just consider how much opening up to your diabetes team and looking for other support networks can do in terms of improving the quality of your life. The most important thing of all is your health and well-being, after all your health is your wealth, so never stop fighting for the kind of care that you deserve. If you feel as though your current GP is not providing you with the best care possible, you may want to seek out a second opinion. In the meantime, take good care of yourself, and please reach out if you need further support.