Bleeding after a stomach attack

[baxtergirl]

I spent a good three hours today reading a lot of all of your posts. I am sad, but relieved that I am not alone in this. I do not know of anyone who has this condition but me. I am so sorry we all have to deal with this condition and the stresses of balancing work, children and this illness. It is not easy and at times I feel a little insane!
My questions is that I most often have two different episodes. I have my normal 2-3 times a week abdominal swelling, which can get very large and uncomfortable at best, and then every so often I have an extermely serious attack which causes low blood pressure, low heart rate, fainting, vomitting, extreme cramping, diarrhea, and always hospitalization. A day after a serious attack I will bleed from my colon, sometimes passing blood clots which can last for a few days. Does anyone else suffer from this? It made my diagnosis take longer as most doctors felt that colonic bleeding would not be a symptom. I have had two major surgeries to "fix" my stomach issue to no avail and finally got the c1 blood test, which came back with very low levels. Waiting for Cynrise to be approved by insurance company.

[blessed365]

I do not have the bleeding, but I do have the low BP and heart rate and sometimes I do pass out and all. I also have colon problems bc sometimes I can not have a BM do to my stomach being so swollen!

Hope this helps!

[baxtergirl]

Thanks! Any thoughts on the low blood pressure? Mine can get 70/40 and heart rate 40. During the last serious attack I could not move my arms or legs. Very weird and very scary!

[blessed365]

My Blood pressure was about the same thing.. sometimes lower..  the lowest it has gotten was 70 over 35. 

they reasure my mom it is ok, it is  just my body going through trauma.. I have also heard it has to do with the oxygen not circulationg as well as the meds they give me to keep my throat open. Now if this is true i am not sure, this is just the answers we recieve when we ask.  I hope this helps!

[baxtergirl]

Thanks for your reply! I should be hearing about my treatment this week. they have ordered Kalbitor to have on hand at the hospital and are still working on cinryze approval. I am nervous about both.

[blessed365]

The hospital where I go to still has not recieved any of the C1 meds that help, but they say the doctors are trying to work on getting them there!!

[baxtergirl]

I hope they do get them soon for you. I just found out yesterday that I was approved for Kalbitor for acute attacks. My insurance will cover it at 100% and my hospital will have it on hand with my name on it. It is kind of scary though. out of 185 people three people go into shock from taking it. Now they are working on my cinryze approval. I hope you can get some relief also. Is it just your stomach or throat also? my throat has never swollen...yet and I hope it doesnt!

[blessed365]

I have had stomach ones, but mostly throat attacks! I have been placed on life support 3 times, due to throat swellings. Yesterday, the swelling hit my throat and stomach and I tell you that is when it gets a little scary!

I do have PRN berinert which I took yesterday and it helped but not as good as before I don't know if my body just needs a little more or what is going on, but one thing I have figured out after I have an attack my body work goes crazy n potassium levels and so on so they tell me to drink lots of gatorade to help replenish what has left my body!!  I hope this helps!

[baxtergirl]

my potassium drops during a serious attack also. I am wondering now if when they tried to give me the pills instead of the IV potasssium at the hospital and I got them stuck in my throat so bad that water was coming out of my nose(sorry to be so yucky... if I wasnt having a throat swell with the abdominal. The nurse just stared at me while I was turning red and trying to breathe. I did finally get them out, but I was really scared and wont take oral P again! Sorry to hear that you had an attack yesterday. Can you work with your condition? I am finding work difficult with this and really struggling through a 40 hour week, especially since I have three kids!

[blessed365]

Oh wow don’t get me started on the potassium IV... They push three bags in me every time I go. And when I say push I mean PUSH! I know potassium stings but if you ever need it tell them to flush it w saline if you are not allergic to saline bc I know some HAE patients are, but they can have both the saline and the potassium running at the same time which makes it a lot more comfortable. I was told numerous times they can’t, but I had one nurse that was nice and ran the two at the same time and boy it did not hurt as bad. They push the meds so fast a few times I thought I was going to pass out! 
Also bc of the HAE our veins are known to blow rather quickly! Especially with steroids and pain meds or sedation meds.  I also had an IV team  nurse put an IV in my hand and about two mins later my hand was the size of a boxing glove! ( but she said she was the BEST so I def. didn’t wnt to say anything lol ) Once the nurse saw she said, " girl that thing has to come out" so I take it she saw my hand, she said my hand looked rather mean. 

I also have a medicine that the hospital does not carry and it is a maintance med for my HAE and the pill is rather large. However the DR. insisted on me taking the pill a few days after life support was taken off and I thought I about had a severe relapse, bc it nearly choked me to death and my ICU nurse said she was NEVER going to give me another pill if the DR wanted me to take it then he wld have to come and watch and that never happened so I didn’t take them for a few days!!  I scared that nurse to death bc she had the suction close to my bed and she had me open my mouth and drinking and everything but after all that it finally went down but I think it scared us all..

As far as working my DR has written orders that I am not to work or be alone, due to the severity of the disease. At first I had NO warning signs but now I have caught on to a few and that helps a lot! but just the other day I was driving with my sister and I felt an attack and I pulled over and she had to drive me home and then I had to take my infusion. I know some say they can carry on once they get the Cinyrze but right now I do have a more functioning life to where before I was homebound for 8 months, but still have to be careful on the things I decide to do.  I spoke with a lady today about the berinert possibly being used preventatively but for now to use it preventively you have to take it 2 times a week and I don’t need it that much I don’t think, but I am too on Danazol which also helps, once they take me off the Danazol the preventive berinert maybe what I go to!  They say there is no long term effects of the berinert where the Danazol can cause liver damage and other fertility damage, so in the long run if insurance will cover it I do believe that is what I will choose!

[baxtergirl]

Sorry it took me so long to reply...busy stressful week and my stomach has pretty much stayed swollen which meant that i had to wear baby doll shirts which make me appear pregnant! My hand swells sometimes with IV aso...it is very painful. I am always blowing an IV which just means more sticks. They are having a hard time finding veins now. I think the worst part for me is constantly worrying about an attack. I may not even get one, but I am convinced that I will get one and I know I am driving my husband nuts! Sometimes I have indicators and sometimes I dont. Christamas eve night was completely normal with no indicators and I had the most severe attack I ever had in the middle of the night. Ambulance had to come...my poor kids!!! I had to fight to come back home on christmas day but stayed sick for 4 days after. It was awful! Work is tough. I am worrying about missing time all of the time and worried I will get fired if I have to call in. they all know that I have an illness, but I still worry. they have decided not to leave me alone anymore...which stinks since i prefer working alone. I am just waiting to see if I get worse and cant work or better and can go on. Does anyone really get better enough not to worry anymore?

[blessed365]

I heard patients of Cinyrze have a pretty normal life!  ( if normal is in the dictionary for HAE patients)

Hang in there! I just got back from hospital I spent 3 days in there after an attack happening evryday for a week my body is extremely weak! But God is Able!

God Bless!!  Hope you are feeling better!