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nichola34000

Peptic ulcer not getting better 5 months later....at my wits end...

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 

 

16 Replies

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  • nichola34000

    Hi, just wondered if you have been tested for diabetes and postural hypotension and maybe thyroid. I was diagnosed with postural hypotension a few weeks ago  and had some of your symptoms when I stand up.

    Good luck

  • nichola34000

    Hi Nichola, I completely understand your anxiety. I joined this site last month as was at my wits end. My son ( who is 14!! ) has had a near identical experience to you. I will message you with all the details later today as Im travelling & internet signal not great. 

  • nichola34000

    Hi Nichola, 

    So as I mentioned earlier my 14 year old son had exactly the same symptoms as you back in April this year and ended up in High Dependancy due to a bleeding duodenal ulcer.  His haemoglobin was also dangerously low and received 7 units of blood in total. He was scoped when he was stable which was when they discovered the ulcer. Up until the point he collapsed he did complain of not feeling too well, felt a bit sick and looked very pale. I feel awful that I hadn't contacted our GP at this stage but really put it down to a virus. Until obviously he vomited large amounts of blood! He also described the feeling at that moment exactly as you did. Luckily I was with him but it was all extremely frightening. He was discharged a week later and put on iron along with 40mg of omeprazole daily. A repeat scope was done 8 weeks later which showed the ulcer had healed although my son still felt a bit poorly. On this basis we were advised he should stop taking medication gradually. Then 6 weeks later exactly the same thing happened again. Luckily we were in our GP surgery at the time and again he was rushed to hospital by ambulance and given the same amount of blood etc etc... By this point I was so scared as we still didn't know what had caused the ulcer initially especially as he is so young. He too was tested for hpylori which came back negative and has since been tested again with the same result. Since September when it reoccurred he has been taking 80mg of the same medication and I think everyone (certainly me is terrified to take him off those Incase it happens again).

    it didn't happen to me Nichola but I fully understand your concerns. It's like living on a knife edge. My son has recently been tested for a few other things which can cause overproduction of stomach acid but as yet we have no answers. Sorry for the long story and if you want to ask anything else feel free.

  • nichola34000

    Hi there Nichola,  I think I have a similar issue to yourself but not on such a serious scale.  Mine started about 3 months ago and like you I felt off one day before Christmas and it got worse from there. I have seen various doctors and had 4 trips to hospital in the space of 4 weeks through collapsing and severe stomach cramps.  I spent my first month or so in bed feeling sorry for myself and worrying that I had some sort of cancer.  All tests were done on blood, thyroid, urine and stools and it returned noting out of the ordinary.  I had cameras popped inside both ends and as they suspected I had a peptic ulcer (well 3 in fact) in different areas.  I had blood in my stools and frequent bouts of diarrhoea so thought that it must be something sinister. 

    There was was a stage where I was worrying about being ill and was ill through worry.  It is a truly viscous cycle and like you life felt fruitless and and I couldn't do the simple things like play with my daughter or even drive.  I was also diagnosed with stress and depression and now have medication for ulcers, depression and stomach cramps as well as seeing a mental health specialist.  The proton pump inhibitors that I was given did not work properly and lowed my stomach acids to a point where I couldn't even digest food properly.  

    This is is still ongoing for me as well but the toughest battle to win is the one against your subconscious.  Whilst I still do not feel right (light headed, tinnitus, stomach pains) I have discovered that forcing myself to do things, regardless of how I have felt has improved my life.  Like you I trust doctors but only you know how you feel!  I hope that you read this and realise that you are not alone in this, I thank god daily that my tests were negative and have worked hard to convince myself that I will make it through no matter what.  

    Hope you you feel better soon.  Richard. 

  • nichola34000

    Hi Nichola

    I'm so sorry to hear your troubles, I have gastritis but not ulcers so far. The stress and fear of going through the pain of coming off ant acids are horrible but can I ask have you been feeling worse since going onto ant acids? Like the fussy ears, anxiety, heart rate increasing?

    I struggled coming off PPIs because of the side effects, I am looking at sucralfate it is supposed to help ulcers heal. Also a good herbalist or nutritionist might be another avenue to explore. The stress will make things so much worse but its a vicious circle, I sometimes wonder if this pain will ever stop but I try and remain positive. My brother in law beat his ulcers, he had them for years, H.P. infection. He bounced back and has been ulcer free for a very long time. He had antibiotics to heal his plus a very strong mental attitude, wish that was me. Let us know how you get on.

  • nichola34000

    Honey, this is not simply an ulcer.  Love for your doctor or not, you need a second opinion, from a specialist.  I've had more ulcers than I can count, the passing out, the tons of medicine... to the point they removed 25% of my stomach.  Only to have ulcers reappear elsewhere, along with stomach erosion.  I've been dealing with this for over 5 years.  In all that time not once have I thrown up blood.  I'm being scheduled for a CT scan to check for a certain rare tumor that causes ulcers.  I suggest you investigate this further.  If you have stomach cancer or something horrible like that and no one is listening to you, that would be a terrible loss for your family.  Stand up for yourself and demand more tests, a specialist, or whatever else you feel you need.  You know your body, they don't!!!  If your doctor won't listen, drop him and get a new one.  Your life is worth it.

  • nichola34000

    Were any of you guys able to heal your ulcer? I'm in the same boat. I've had one for two years and now have gastritis. PPI's don't work.

    • rachel05155

      Hi Rachel, I've had an ulcer for 8 months when I was in the hospital after detected in the ER.  I've been on Protonics since then and have undergone many tests,  Not Hpylori, not cancerous. My doctor said it's possible that it will not heal and I might be on Protonics for ever.  The Protonics has stopped the bleeding.

  • nichola34000

    Hi nichola34000, 

    I just came across this blog and I wonder if you're still having these symptoms? I have the solution for you. If worked for me and many others.

    Long story short, I had the same symptoms 2 years ago and couldn't get rid of it. I tried several different remedies and all were unsuccessful. I took 3 months off of work (long term disability). During those 3 months I needed something to distract me, so I signed up at the local GYM! It really works having an active lifestyle. Unfortunately, my symptoms recently came back (3 weeks ago), which is funny because I cancelled my gym membership a month ago. During my active lifestyle I was completely healed and felt great! Please give this a try. I also changed my diet and drank lots of camomile tea.

  • nichola34000

    To everyone who had ulcers. What does ulcer pain feel like is it pain only or does it accompany burning. I am suffering from severe upper abdominal pain like I have been punched in stomach, after taking antibiotics. I did not have any symptoms but doctor prescribed tripple therapy antibiotics because my blood test were positive for hpylori. On the second day of tripple therapy course I developed severe upper abdominal pain I sometimes even find it difficult to breath or walk, I cant do any work since its aggravates my pain. My stomach feels swollen from inside. My symptoms are pain only without any burning. Does ulcer cause pain only without burning?

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