We received responses to our questions to Dr. A; below is our e-mail to him followed be each answer in italics:
As always, after having a little time to pray and process we have several questions. We realize there may be some you are not able to answer but we appreciate your honesty regardless. Please know, we don't want you to feel burdened by us; we don't expect you to be able to "fix" everything (even though it may seem we do!). And, we don't ever want you to feel we are relying on you to work some miracle~~that's God's job! We value your professional opinion and appreciate your wisdom. We also appreciate the fact you are aware of your limitations, knowing when to and not threatened by seeking outside advice. We have encountered doctors in the past who think they are the be all/end all. I am happy to call in other doctors with expertise as needed. I am more than humble in knowing that I do not have all the answers. If you at all feel that a different perspective is needed or things are not being adequately addressed, please let me know ASAP. I have discussed the case with other doctors and we are still in the information accrual phase. If I find someone to fix the situation, I will be the first to call. Having our current information, I am going to discuss with Dr. S.
On to questions:
Are adhesions in one particular area or all the way down? In talking with Dr. M this AM, the adhesions are in multiple locations. Look at Ron’s abdomen – anywhere that you see a scar is likely tethering small bowel and preventing it from working well.
How can this be seen with DBE if it's outside the intestine? By seeing the tethering, looks like hanging drapes. Also the multiple pools of fluid are consistent with tethering at multiple locations
Is surgery even an option? Need to discuss with Dr. S. It would be a BIG surgery with lots of risks – losing significant small intestine, recurrent fistulas…
Would surgery to remove adhesions just cause more adhesions? Adhesions are common after surgery – the more surgery, the more adhesions
If the adhesions are removed will the intestines function as normal again? Hopefully
Are there signs that the intestines are indeed trying to function? Yes because Ron is able to maintain fluid and electrolyte balance despite ongoing nausea, vomiting. The problem is motility – things are having a hard time moving down the pipes and stagnating leading to nausea, vomiting..
TPN what are the long-term effects? Can you live on it forever? TPN can be a long term solution – ie, lifelong. Complications include micronutrient deficiencies, neuropathy, and abnormal liver tests.
Quality of life? some sense of normalcy with life and eating. This is the BIG one. We have to talk together about what risks need to be considered for what level quality of life…
What are limitations on food? What is the line? (you need to ask Ron more about what he means by this) I would limit to liquids. The line is just before nausea and vomiting start.
Why did he seem to do well for a while on eating and now this? Adhesions just continued to “scar down?” I think the adhesions are a progressive process with continual, ongoing scarring. It is not inevitable that scarring progresses indefinitely but I think problems worsening with more scarring over time.
Can they somehow "suck out" the stagnant liquid that is already in the GI tract? The stagnant fluid is a secondary problem. It is the result of things not moving down the intestines in a concerted manner. The fluid then becomes a breeding ground for bacteria leading to nausea, bloating, and possibly diarrhea.
What about potential bacterial overgrowth? What exactly does this mean? See above. Try to limit it with cyclic antibiotics.
His answers led to more questions from us, of course!
Ron wants to know what’s it going to hurt for him to try to eat food? Will this cause added bacterial build up that would be harmful? Or just the added issue of vomiting exacerbating esophagitis? Or ...?
We would really like a better understanding of his fluid intake…what exactly he should be taking in; i.e. protein drinks-- what to look for, low in sugar? High in protein? High in calories? Which kinds are best suited for his needs, etc
Interested in knowing what Dr. S has to say.
Are we at that point of making a decision of live the rest of his life on fluids & TPN or consider the risks of surgery and make a decision?
If surgery is not recommended, do we consider this is how it’s gonna be for the rest of his life?
Not sure you can answer, but how long does insurance cover TPN? Home health? Supplies? , etc
Areas of concern:
Lot of edema going on with swelling in left leg more significant than right; how is this controlled? If he's going to be on TPN indefinitely the fluid gain is really going to be a problem seeing how much it is in just the 3 weeks he's been on.
The swelling makes him feel heavy (like he has ankle weights on) thus it slows him down. (He also gets ridges around legs when wears socks; and I know it's not good for his skin, etc). How do we address this? (weight is now up by 12 lbs since beginning TPN)
Once again he’s been getting a lot of heartburn even though he’s just on fluids. But vomiting has decreased to only 3 times in the last 11 days, woo hoo!!!
Thanks for your continued prayer! We'll let you know when we know!
Christie
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