I don't really know how to start off this post, so I'll try to be as succinct as possible. My husband (24) has had many health issues during his lifetime. These health issues include a pilonidal cyst that has never healed (he's had many, many surgeries to try to correct the problem and doctors have stated it is a medical mystery). Because of his non healing cyst he was also advised to get an ileostomy, which he has had for about 8 or 9 years now. In his teenage years he was diagnosed with asthma, but he has always disagreed with the diagnose.
Now, I'm writing this because I believe he may have cystic fibrosis and we are planning on getting him tested in the near future, but I was wondering if this made sense to any body out there.
These are his symptoms from what I understand:
Now, I have a theory and I was hoping someone could analyze it based on their own experiences. My theory rests on the assumption that my husband has cystic fibrosis. Here it is: My husband found out about his pilonidal cyst when he was around 14/15. During this time he was very active (riding his bike, playing soccer, etc.) It is my understanding that exercising loosens the mucus for people with cystic fibrosis, so if he was exercising a lot at this time, that may be the reason he never knew there was a problem (assuming the condition wasn't too severe to begin with). Now, he deals with his pilonidal cyst by going to the doctor (30+ surgeries), and the cyst is not healing. The doctor suggests they give him an ileostomy to hopefully clear up any infection and then the cyst will heal. The cyst still is not healing. My husband can no longer exercise so the mucus begins to thicken again. His diet is low in fat and high in carbs so his body is not getting the nutrition it needs. His condition worsens and the doctors are dumbfounded. Fast forward to the present (he is almost 25) - is it possible that the thick mucus caused by cystic fibrosis is preventing his cyst from healing? I should mention his cyst is in his butt area, so it is in an area that would have mucus and such.
My husband booked a doctor appointment this morning (the same doctor who initially diagnosed him with Asthma) for July 29. I'll have more information after that first appointment. I'm a little disappointed that he couldn't be sent to a specialist straight away, but I understand they need to follow whatever process they have.
One side note about his ileostomy: A couple years after he had the surgery (and when he started College) he gained a lot of weight, and was very bloated. I understand that usually when someone has CF they tend to be underweight from the malnutrition, so I'm not sure if this fits with the CF diagnose or not. However, I came across this interesting statement while I was researching:
"Question:After ostomy surgery, I have gained excess weight. What happened? What types of food should I eat? The relaxation of dietary restrictions, freedom from debilitating illness and malabsorption promotes a rapid gain in weight. Follow the same weight reduction diet as recommended by nutritionists and dietitians. Eating smaller quantities of a well- balanced diet and increasing water/fl uid intake will assist with weight reduction." [ found here = http://www.ostomy.org/ostomy_info/pubs/OstomyNutritionGuide.pdf ]
Another part of my theory is that his ileostomy actually allowed him to absorb nutrients better than before when he did not have the ileostomy. When he was younger he was always the smallest of his 2 older brothers (one is just over a year older, and the other is probably 2 years older).
My theory regarding the cyst is that because the cyst is in an area that is sensitive to mucus, the mucus is making the area damp and "clogged" up so that the cyst cannot heal. I haven't come across any information regarding cysts, ileostomies or CF in combination.
The story is a very long one and I'm sure I've missed some key points. This medical mystery has plagued him for so long it would be a miracle to discover if the culprit was cystic fibrosis all along. If you need any more details or clarification please let me know.
Now, I'm writing this because I believe he may have cystic fibrosis and we are planning on getting him tested in the near future, but I was wondering if this made sense to any body out there.
These are his symptoms from what I understand:
- Salty sweat
- Wheezing and breathlessness (for example if we are running to catch a bus it will take him approximately 20 minutes to "calm" down, but for me it may take 4 or 5 minutes max). Apparently when he was younger and active his parents forced him to use his puffer once every day but in his words he "felt no relief" from it, so eventually he just refused to take it anymore. He has never had an asthma attack, which is why we feel this is more of a cystic fibrosis symptom.
- Decreased ability to exercise (although in this case it may be due to his cyst or his ileostomy, as he played soccer and was very active during his adolescent years)
- Pneumonia / sickness (In 4 years he's had pneumonia only once, but he does seem to get sick more easily than I do. After visiting his parents for a weekend and his father was sick for the last day we were over, by the time we got home my husband had already gotten sick and I was fine. Again, though, I'm not sure if this is due to the cyst that will not heal and is thus causing issues with his immune system).
- We believe he has bouts of sinusitis (pressure in the jaw and behind the eyes) and pneumothorax
- We're unsure of any nutritional deficiencies, but before I knew him he suffered a lot from bloating, heartburn and discomfort every time he ate gluten products. Over the last year we've changed our diet to low carb (high fat / high calorie) which has greatly limited the heartburn and bloating issues to the point that they are basically gone, so long as we stick to the diet.
- We haven't tried for any children, so we're not sure if he's infertile or not.
- He sweats A LOT and his heart rate is very, very high. It is my understanding that high heart rate and fatigue is caused by sweating too much salt out, so this make sense to me.
- Before the ileostomy his stools were very sticky, and I've heard that this may be a symptom. However, the ileostomy makes it difficult to address most stool related symptoms.
- His mother told us that when he was a baby his stool came out as "pebbles" although I haven't heard if this is a symptom or not.
- He coughs up mucus every morning (yellow coloured mucus)
- Because of the ileostomy he doesn't poop like a regular person, so mucus builds up in his bowels and he has to empty them that way. This was my first warning sign because over the last two weeks he's been needing to bowel empty A LOT, and usually during this time he feels bloated, uncomfortable, in pain, pressure around his belly button, etc. In his words, it's like he has to have diarrhea, but nothing is coming out (obviously he can't have diarrhea, but I think that demonstrates the feeling pretty well).
- He gets dehydrated very easily. We thought too much coffee was causing the mucus buildup, but he was having the buildup even without caffeine which is why I thought to look up cystic fibrosis.
- I edited my post to say that during his surgeries he was constantly on antibiotics, which may have indirectly helped his cystic fibrosis (again, assuming he has CF). I thought this was very interesting. The year we met he no longer wanted surgeries (4 years ago), so since then he hasn't been on antibiotics, (other than 2 or 3 times the last 4 years because of the flu / bad colds), and perhaps this explains why his mucus has been getting worse since those initial surgeries.
Now, I have a theory and I was hoping someone could analyze it based on their own experiences. My theory rests on the assumption that my husband has cystic fibrosis. Here it is: My husband found out about his pilonidal cyst when he was around 14/15. During this time he was very active (riding his bike, playing soccer, etc.) It is my understanding that exercising loosens the mucus for people with cystic fibrosis, so if he was exercising a lot at this time, that may be the reason he never knew there was a problem (assuming the condition wasn't too severe to begin with). Now, he deals with his pilonidal cyst by going to the doctor (30+ surgeries), and the cyst is not healing. The doctor suggests they give him an ileostomy to hopefully clear up any infection and then the cyst will heal. The cyst still is not healing. My husband can no longer exercise so the mucus begins to thicken again. His diet is low in fat and high in carbs so his body is not getting the nutrition it needs. His condition worsens and the doctors are dumbfounded. Fast forward to the present (he is almost 25) - is it possible that the thick mucus caused by cystic fibrosis is preventing his cyst from healing? I should mention his cyst is in his butt area, so it is in an area that would have mucus and such.
My husband booked a doctor appointment this morning (the same doctor who initially diagnosed him with Asthma) for July 29. I'll have more information after that first appointment. I'm a little disappointed that he couldn't be sent to a specialist straight away, but I understand they need to follow whatever process they have.
One side note about his ileostomy: A couple years after he had the surgery (and when he started College) he gained a lot of weight, and was very bloated. I understand that usually when someone has CF they tend to be underweight from the malnutrition, so I'm not sure if this fits with the CF diagnose or not. However, I came across this interesting statement while I was researching:
"Question:After ostomy surgery, I have gained excess weight. What happened? What types of food should I eat? The relaxation of dietary restrictions, freedom from debilitating illness and malabsorption promotes a rapid gain in weight. Follow the same weight reduction diet as recommended by nutritionists and dietitians. Eating smaller quantities of a well- balanced diet and increasing water/fl uid intake will assist with weight reduction." [ found here = http://www.ostomy.org/ostomy_info/pubs/OstomyNutritionGuide.pdf ]
Another part of my theory is that his ileostomy actually allowed him to absorb nutrients better than before when he did not have the ileostomy. When he was younger he was always the smallest of his 2 older brothers (one is just over a year older, and the other is probably 2 years older).
My theory regarding the cyst is that because the cyst is in an area that is sensitive to mucus, the mucus is making the area damp and "clogged" up so that the cyst cannot heal. I haven't come across any information regarding cysts, ileostomies or CF in combination.
The story is a very long one and I'm sure I've missed some key points. This medical mystery has plagued him for so long it would be a miracle to discover if the culprit was cystic fibrosis all along. If you need any more details or clarification please let me know.