5 months after severe bleed.....health getting worse and worse

Hi,

 I am new here, so 'hello' first of all and I really hope I can find some help here.

Nearly five months ago, I woke up in the morning feeling 'off'. I assumed I was just getting sick...again....because before that morning, I was suffering from all sorts of health issues. I felt like I was constantly sick (with cold/flu like symptoms), I was dizzy at times, vomited randomly and had some heart burn. I went to the doctor a few times, he ran tests and nothing remarkable came back in the results.

So shortly after I got up, I had to go back to sleep. I felt really foggy, dizzy and weak. I slept for most of the day and evening. At around 8pm, I got up to use the washroom. And nearly passed out  just trying to pee. When I stood up, I collapsed and things just got extremely scary from there. I could not get up from the floor, in fact I couldn't even speak, my hearing and sight went, my breathing was out of my control and extremely shallow. I was freezing cold and then I vomited about three units of blood (frank). I had the terrible feeling I wasn't going to survive. My husband wasn't home, I was alone...and there was no way I could have reached the phone to call 911. 

Thankfully my husband came home shortly after with our kids, he found me when he opened the washroom door and found me. He called 911.

When I got to the ER my hemoglobin was 72, I was given four units of blood. Which brought my hemoglobin up to 86. I was scoped two days later and they found a peptic duodenal ulcer. Which the GI specialist claimed was healing. I was sent home with iron supplements and proton pump blockers.

Since then, my health has been a complete MESS. My hemoglobin has not come up over 104, my iron count is 8, my palettes are climbing with every blood test (weekly), so is my RBC, carbon dioxide and other things I can't remember right now. I've lost 70lbs since the bleed. 

I struggle to do anything, walking around our apartment leaves me winded, my heart races and I usually have to brace myself or take a break, due to dizziness or fatigue. My mood is awful. My ulcer still hurts ALOT despite the proton pump blockers (which have been changed a few times to see if a change could help). I can sit down for five minutes or five hours, and every time when I stand....I'm dizzy. Sometimes more than others, ranging from feeling like I might faint to having to brace myself for a minute before continuing on.

At times my sight goes blurry, for no reason and it doesn't only happen when I am dizzy. My ears/hearing is sometimes muffled. Like I'm wearing earplugs. My arms and my legs, are covered in bruises, which very few are from injuries. Most of them are from pressure, applied to that area. Like if I sit cross legged on the floor, my feet are badly bruised afterwards.

I have two young kids, and I can't play with them, I can't even lay on the couch just it be around them...because my sleep pattern is completely reversed. 

I do not smoke, drink, or do drugs. I am not on any meds except a Rx sleep aid. I have always tried to avoid meds (even pain meds) if I could. And I was tested for h. Pylori, a breath test, blood and stool. All were negative.

I am beyond frustrated and while I love my family Dr and trust him. He doesn't seem to get how much and how negatively this is affecting myself and my entire family. He told me it should take about three months for my body to recover (my hemoglobin). Yet it's not, it has come up to 104. But then dropped back down to 99. 

I have an appointment with him this Monday and I am terrified that, because my most recent level came up from 99 to 104. He is going to say, I am getting better. I know I am not.

I am hoping someone might have some advice or suggestions.....because I can't keep going on like this. I am missing my kids growing up. And I just cannot understand how feeling this way for so long, is remotely ok or getting better. 

I am also curious if anyone has had a second bleed, with an ulcer that previously bled? I'm terrified of having another severe bleed with my hemoglobin being so low. 

Thanks for reading this novel!

smile 

 

Hi Nichola, Just want to wish you a better 2015. I'm a Gastitis sufferer. Feel dreadful most days. I have been juicing fruit and veg which has helped me. Lapsed over Xmas and paying for it. Fed up with taking tablets and feeling worse. 

X

Nichola, so sorry to hear all this. I have or had not sure about this till see consultant later this month....gastritus! I have pernicious Anemia (Very low B12) and very low iron. You may "trust" your dr but get a second opinion! Do it right away. Whilst I was on PP blockers I couldn't eat spicy, oily, foods have coffee, alcohol or chocolate...all are known irritants. I first noticed my issues last July when I was sleeping for hours on end in the middle of the day (I work for myself so not a work issue as such) then sleeping heavy at night....I was also craving ltrs of salt water! The crunch came for me was when the craving changed to sweet stuff overnight and then I went to see the doc! Since then, I have had endoscapthy and colonoscapthy and my consultant said he was hgappy with the diagnosis...gastritus (Inflamed lining of my stomache). B12 is a life long issue now but controlable with injections every three months and thats fine. The low iron well thats down to diet I believe but we will see what the results are later this month from having a 6 week course of suppliments. You "sound" as if you might be B12 deficient and have very low blood pressure. Look at your diet and as I have said before on this forum....get a second opinion. If the have the endoscapthy please be warned it is a very horrible procedure and dont let anyone tell you it isnt. But for your sake and that of family life don't just beleive one doctor said as many that it takes to get the right answers. Good luck.x

HI, yep you cannot absorb the iron without the (B) group. Take a strong multi b.  Are you in the US or GB??? What iron dose are you on.  The wife had exactly same. But after 3 really strong iron tablets (I'll get the dose if you want) and a B12 and Multi B every day after 3 months she was back to normal.  They can give you constipation!!