Input Is Appreciated!

[gringa-lg]

So, I would love to hear any input that any of you may have about my husbands condition. I am at a loss of what to do for him as we don't have health insurance and the county hospital is a joke. His history is below.... any input or suggestions are greatly appreciated! 

 

June 1st of 2011 he was hospitalized for 4 days and received 2 blood transfusions because he had lost so much blood..His blood level was around 6.5. He was losing blood when ever he had a bowel movement, which was daily, sometimes multiple times a day. He had always had the bleeding issue and it began around the age of 12/13 years old and he is now 28, almost 29, years old. The doctors at the hospital checked for hemorrhoids, which he had (I don't remember if they were external or internal but it wasn't enough to cause the large amount of bleeding) and they performed a colonoscopy, endoscopy, and they had him drink a dye to do (I believe) a CT scan. They were unable to find anything to cause the bleeding. He had blood tests done and nothing came back abnormal. He has been taking fiber (4 capsules daily at 0.52g/capsule) and iron pills (2 tablets at 65mg each) since that incident, he still has the bleeding (which he has had daily since he was 12/13 years old), but has noticed that the bleeding has increased to the point of where he will need to be hospitalized again, soon, if we can't find a solution. 

 

He says that when we eat healthy it is bright red but when we go out to eat, grab a burger, etc. it generally is dark red. He does have clotting, he said its normally all the time, but it always looks like someone poured blood in the toilet bowl. His stools are firm and it hurts for him to have a bowel movement (in his words "bowel movements make him feel like its opening up his guts"). He also said that he has a sharp stinging pain (in his rectum) mostly through the day, however it goes away at night.

 

 

[SeekingSarah]

So, I would love to hear any input that any of you may have about my husbands condition. I am at a loss of what to do for him as we don't have health insurance and the county hospital is a joke. His history is below.... any input or suggestions are greatly appreciated! 

 

June 1st of 2011 he was hospitalized for 4 days and received 2 blood transfusions because he had lost so much blood..His blood level was around 6.5. He was losing blood when ever he had a bowel movement, which was daily, sometimes multiple times a day. He had always had the bleeding issue and it began around the age of 12/13 years old and he is now 28, almost 29, years old. The doctors at the hospital checked for hemorrhoids, which he had (I don't remember if they were external or internal but it wasn't enough to cause the large amount of bleeding) and they performed a colonoscopy, endoscopy, and they had him drink a dye to do (I believe) a CT scan. They were unable to find anything to cause the bleeding. He had blood tests done and nothing came back abnormal. He has been taking fiber (4 capsules daily at 0.52g/capsule) and iron pills (2 tablets at 65mg each) since that incident, he still has the bleeding (which he has had daily since he was 12/13 years old), but has noticed that the bleeding has increased to the point of where he will need to be hospitalized again, soon, if we can't find a solution. 

 

He says that when we eat healthy it is bright red but when we go out to eat, grab a burger, etc. it generally is dark red. He does have clotting, he said its normally all the time, but it always looks like someone poured blood in the toilet bowl. His stools are firm and it hurts for him to have a bowel movement (in his words "bowel movements make him feel like its opening up his guts"). He also said that he has a sharp stinging pain (in his rectum) mostly through the day, however it goes away at night.

Anyone do a visual exam for an anal fissure? 

[nvsmom]

Ouch! Poor guy. Hemorrhoids can cause a lot of bleeding but his sounds pretty bad. Celiac and Hashimoto's caused me to deal with constipation for most of my life and I ended up with hemorrhoids too but they don't act up all of the time...To actually become anemic, his rectal bleeding would have to be very heavy; I would guess it would have to be like a heavy menstral flow to the point of needing to protect his pants from the blood.  Because of that, I would guess that something else is causing him to be anemic.

 

Are his B12 levels okay? Celiacs are often low in B12. Low B12 can lead to anemia too.

 

How was his ferritin and iron levels? Those are more nutrients that celiacs are often low in

 

If you do suspect that gluten is causing this, the blood tests you would want to request are:

• ttg IgA and ttg IgG
• EMA IgA
• total serum IgA
• DGP IgA and DGP iGg
• AGA IgA and AGA IgG (older test)

The most common tests are the first three.

 

Did they look for damage during his endoscopy?  If you have a copy of the report, some who have gone through the biopsy might be able to offer you advice on it's meaning if you share it's contents.

 

How are his platelet counts? I became very anemic from low platelet counts (thrombocytopenia) years ago. My nutrient levels (B12 and iron) were all fine but I was bleeding so much (menstral) that the doctors tried to push a blood transfusion. My bleeding was very very heavy with the need for a couple of maxipads to be worn at all times, and changed every hour or two at the most.  I mention this because (I think) to actually bleed enough to need to be hospitalized, you need to lose a LOT of blood BUT if there is something else causing his body to not replace the red blood cells fast enough (low B or ferritin, I think D can affect it too) then anemia is more likely.

 

I hope that made some sense...

 

Good luck and best wishes. I hope you find answers soon.

[tarnalberry]

I would highly encourage you to call around to local GI docs and ask if anyone will work on a sliding scale or set up payment plans.

[gfreemarketingguru]

completely understand, my husband has had this issue for years..it is frightening! He's been hospitalized, seem many gi docs, colonoscopies, etc. 5 yrs ago at 35yrs,old a GI doc said "you have the colon of a healthy 90 yr old man, come for another colonoscopy in 5 years". Ridiculous. His hemroid situation got worse & then he developed rectal prolapse (of which he feared surgery. Then my 1 1/2 yr old got sick, after 2 months of hell, we learned it was celiac and threw away all glutenous foods. My,hysband got crazy gluten withdrawl symptoms BUT his bathroom issues immediately showed improvements. His doc blew it off so, we've been going at it alone. 8 months later, he still gets bouts of bleeding but much much improved! I also think sugar is a factor...look,up candida/yeast infections. We also supplement with lots of vitamins...multis, omega 3s,, b12,, niacin, c. There was a

point where he could barely work, no energy & needed to be close to a bathroom. Now, he's back to functioning normally. Our goal this year is to find the right doc, until then, he is doing good. Try gluten-free diet, cut back on sugar/soda, eat healthier...fruits, vegis, meqt & potatos...and see if the changes are as obvious as theyas were to us. One word of warning, it is good to get tested for celiac now, because once you go gluten-free, tests are not accurate! Good luck.

[gringa-lg]

I appreciate your guys' input! I'm afraid I don't have answers for specific questions.....I thought, at the time, I was asking good questions when I would occasionally see the doctors, but apparently not! 

 

 

 

completely understand, my husband has had this issue for years..it is frightening! He's been hospitalized, seem many gi docs, colonoscopies, etc. 5 yrs ago at 35yrs,old a GI doc said "you have the colon of a healthy 90 yr old man, come for another colonoscopy in 5 years". Ridiculous. His hemroid situation got worse & then he developed rectal prolapse (of which he feared surgery. Then my 1 1/2 yr old got sick, after 2 months of hell, we learned it was celiac and threw away all glutenous foods. My,hysband got crazy gluten withdrawl symptoms BUT his bathroom issues immediately showed improvements. His doc blew it off so, we've been going at it alone. 8 months later, he still gets bouts of bleeding but much much improved! I also think sugar is a factor...look,up candida/yeast infections. We also supplement with lots of vitamins...multis, omega 3s,, b12,, niacin, c. There was a
point where he could barely work, no energy & needed to be close to a bathroom. Now, he's back to functioning normally. Our goal this year is to find the right doc, until then, he is doing good. Try gluten-free diet, cut back on sugar/soda, eat healthier...fruits, vegis, meqt & potatos...and see if the changes are as obvious as theyas were to us. One word of warning, it is good to get tested for celiac now, because once you go gluten-free, tests are not accurate! Good luck.

I think we will be going gluten free just to see if it helps. We don't exactly have the time or money to be going thru the hospital to try to get blood work done. Thank you guys so much for your help! Now it's just trying to find ways to eat without breaking the bank!   

 

Ouch! Poor guy. Hemorrhoids can cause a lot of bleeding but his sounds pretty bad. Celiac and Hashimoto's caused me to deal with constipation for most of my life and I ended up with hemorrhoids too but they don't act up all of the time...To actually become anemic, his rectal bleeding would have to be very heavy; I would guess it would have to be like a heavy menstral flow to the point of needing to protect his pants from the blood.  Because of that, I would guess that something else is causing him to be anemic.

 

Are his B12 levels okay? Celiacs are often low in B12. Low B12 can lead to anemia too.

 

How was his ferritin and iron levels? Those are more nutrients that celiacs are often low in

 

If you do suspect that gluten is causing this, the blood tests you would want to request are:

• ttg IgA and ttg IgG
• EMA IgA
• total serum IgA
• DGP IgA and DGP iGg
• AGA IgA and AGA IgG (older test)

The most common tests are the first three.

 

Did they look for damage during his endoscopy?  If you have a copy of the report, some who have gone through the biopsy might be able to offer you advice on it's meaning if you share it's contents.

 

How are his platelet counts? I became very anemic from low platelet counts (thrombocytopenia) years ago. My nutrient levels (B12 and iron) were all fine but I was bleeding so much (menstral) that the doctors tried to push a blood transfusion. My bleeding was very very heavy with the need for a couple of maxipads to be worn at all times, and changed every hour or two at the most.  I mention this because (I think) to actually bleed enough to need to be hospitalized, you need to lose a LOT of blood BUT if there is something else causing his body to not replace the red blood cells fast enough (low B or ferritin, I think D can affect it too) then anemia is more likely.

 

I hope that made some sense...

 

Good luck and best wishes. I hope you find answers soon.

I'm not sure, specifically, how his blood levels are. They looked for damage during his endoscopy and colonoscopy but found nothing. I'm afraid I didn't ask enough specific questions to provide you guys with more information.....I didn't know what to ask really. I just wanted him well and was very, very sleep deprived.  

 

Anyone do a visual exam for an anal fissure? 

Neither one of us are positive if they did or not. This was almost 2 years ago and unfortunately during the time he was in the hospital, I was at work. If I wasn't at work, I was staying with him at the hospital but they did all blood work and testing during the mornings, when I wasn't there. I would assume that they would have checked for something like that especially with the symptoms that he was having. 

[SeekingSarah]

I had bleeding 10+ years ago, bright red low blood levels doctor did a colonoscopy noted hemmoroids nothing else. After my WLS when I had more bleeding my WLS surgeon sent me to a rectal surgeon to be checked. He did a visual exam in the office and dx'd the fissure, and prescribed nitroglycerin cream for it to heal it. I was a bit confused that the other doctor would do a colon but miss it but he was just putting the scope in not really exam the area. But the overall "treatment" is to normalize bowel movement so the area can heal, so going Gluten-Free will do that.... 

[EmiPark210]

If you're within the US and still are able to get to the offices where he has had work done, you (or he more likely) should be able to get copies of any of the tests done. If you are able to do that and see any of the tests that nvsmom talked about, feel free to post the results here and we can help you figure them out as well as internet searches for anything we don't know about.

 

As to eating gluten-free on a budget, as a full-time college student, it's something I struggle with as well and am learning good tricks to. Avoid any gluten replacement products like gluten-free breads and pastas. You can usually get rice in bulk for a grain replacement. And just try to eat more whole foods, so shopping the perimeter of the store rather than the aisles, and pay attention to what is in season because those products will generally be cheaper (and tastier) than things that are out of season. Keep track of what you buy, how much you use and information like that so you can keep track of wastefulness. Frozen veggies also last longer if you have trouble using up ingredients. 

[gringa-lg]

If you're within the US and still are able to get to the offices where he has had work done, you (or he more likely) should be able to get copies of any of the tests done. If you are able to do that and see any of the tests that nvsmom talked about, feel free to post the results here and we can help you figure them out as well as internet searches for anything we don't know about.

 

As to eating gluten-free on a budget, as a full-time college student, it's something I struggle with as well and am learning good tricks to. Avoid any gluten replacement products like gluten-free breads and pastas. You can usually get rice in bulk for a grain replacement. And just try to eat more whole foods, so shopping the perimeter of the store rather than the aisles, and pay attention to what is in season because those products will generally be cheaper (and tastier) than things that are out of season. Keep track of what you buy, how much you use and information like that so you can keep track of wastefulness. Frozen veggies also last longer if you have trouble using up ingredients. 

I appreciate the tips! I will get his hospital record, but probably not until next month....short on cash and need that tax return.

 

I have done some price comparison shopping and have decided to make my own breads because there is no way I am paying $6/loaf especially with the way he inhales it. I found a flour replacement (---> Open Original Shared Link) if anyone would find that helpful. I love baking so I suppose that's convenient. I have found a lot of gluten free food blogs and things on Pinterest so that will help.

 

I did see some quinoa pasta the other day that wasn't too expensive. Anyone know how that tastes?

[nvsmom]

I haven't tried quinoa pasta but the rice pastas are good. Spaghetti squash is even better with a nice tomato meat sauce on it. Mmmm.