My Brush with Death

I wonder if eating liver helps at least. I hope this never happens to you again. Hugs

So sorry. Hope you feel better.

How many transfusions have you had? I would talk to your dr about this because you can develop allergic reactions to them which makes it very difficult/dangerous in the future (ie. if you need surgery and blood). As I mentioned this happened to a friend's child b/c of his severe bleeding from his UC. I'm glad your UC is doing better though. Maybe it's finally decided to give you a break!

How frightening! You'd never expect an allergic reaction with IVIG. Wish it had gone better for you- keep us posted! Recover ASAP!

My friend whose son I mentioned was told by his GIs that they would not treat him any longer (he had severe UC and flared for two years while they tried every med and alternative to control it - he was a very severe case, lots of pred etc). They told her he could die b/c he was developing more antibodies to different types of blood and the blood he got had to be specially ordered from a special blood bank (and they didn't always have it). They basically told her if she left the hospital with him they would look into legal advice - he ended up nearly dying and had surgery last year. He's now doing great.
That's not your case obviously and it's far from it, it's also a child vs adult but I do think since you react to so many things and when you have that tendency you can begin to react to more things I'd think about how much longer you want to manage your UC this way. Having said that, you seem to be doing better and you mentioned your bleeding had stopped so maybe you won't need anything more transfusions for a while. Hopefully that's the case. What do your GIs say about it?

Holy crap!!! how horrible for you to have gone through that.

Hate to say this...but maybe surgery is something you need to investigate?

q

just got home tonight.

i am nervous to be out of the hospital to be honest. any time i feel my heart beat faster, i start having a panic attack.

my gut started to get bad last night. i tested positive for c diff again but my doctor said i would for a few months after my february c diff diagnosis. they offered me flagyl but i declined. if i start noticing more symptoms, then i might have to start vancomycin again. i'm super mad that either the IVIG or just being in the hospital triggered my gut problems to get bad. i've been feeling so good lately and totally regret going to the infusion on tuesday. the one doctor said what happened during infusion was that my body went into attack mode when the donor's proteins entered my body. it set off a huge inflammatory response so he said i'd feel sick for a while until it was out of my system. that's why i'm not sure whether to attribute my diarrhea to c diff or the IVIG. so annoying.

pathogen, no, my IGG was just tested. i asked my doctor about the IGA but he said it wasn't necessary. he's just an IBD doctor and looking back on it now, i wish i had seen another doctor to get a second opinion about the blood disorder. i spoke with 2 hematologists at the hospital and they are having me try another drug called venofer. i go for 5 infusions next week and i'm freaking terrified!

killcolitis, my bleeding started again last night. i'm so annoyed about it. i've worked really hard to get rid of it and now i see it again.

pluot, i might see a new GI. i've been in the hospital more times than i can count since i've listened to him (5 hospital stays). he's my 5th GI doctor and i'm just losing faith in all of them.

quincy, not sure how surgery would help but i met with a surgeon last year on the recommendation from my GI. just not something i want to do at all. i need to address my iron/hemoglobin problem.

killcolitis, thanks so much. i'm hoping my gut calms down. i hate having the urgency and gurgling feeling again. i don't even wanna see my GI doctor again. i think i might punch him in the face because i'm just so angry. the hematologists at the hospital said they haven't had problems with venofer. but who knows what will happen. i just feel like i don't have a choice with the iron. not sure what other infusions to take.

bookworm, i never had any reactions to remicade. it's just been the iron infusions and the IVIG. i've been good with blood tranfusions so far.

what kind of reactions did you have and what were you premedicated with? i got vicious hives from ferrlecet (sp?).

my hemoglobin is at 10 right now but it drops so quickly.

How much does it drop by? I'm surprised that you're getting iron infusions for a hemoglobin of 10. I've always had a hemoglobin of 10-12 (even pre-UC) and was never recommended for iron infusions by my main (competent) docs. Have you tried OTC iron supplements (Bifera is best for the gut)? Have you had other iron tests dones (ex. ferritin, which is the amount of iron stored in your body; I think there are a couple more tests too)?

When I complained to my new PCP (I moved for grad school) about the fatigue (which wasn't fatigue--it was sleepiness, but that's a different story), he suggested seeing a hematologist for iron infusions. The hematologist ran several tests and found that my ferritin was 30 (normal range is about 20 to 200), so she started me on iron infusions. I was fine after the first one. I developed a migraine during my second one and asked if I could have a slower infusion rate and/or pre-meds before the next one, and they said that they don't do that. So I took Tylenol and Zyrtec on my own before the third one; I still got a migraine plus nausea during the infusion. Once I got home, I started having terrible nausea, diarrhea, and vomiting--I couldn't even keep water down (or zofran for that matter). I didn't eat anything for the following 24 hours and got IV fluids the next day. When they checked my ferritin level, it was almost 800! **However, my hemoglobin level didn't budge.** I'm not sure if the reaction was to the infusion itself or the iron overload in my system--probably both.

Anyway, moral of the story: Make sure they check ALL of the iron lab tests.

andrea, goodness, i can't stop napping since i've been home. same with my mom. we are catching up on sleep since the past few days didn't contain much of it. my last iron infusion to ferrlecit was really bad hives that benadryl didn't get rid of- i had them for 2 weeks.

bookworm, i think my doctors would rather me have continuous iron infusions instead of blood transfusions. i'd prefer this, too, since i hate relying on other's people blood for hemoglobin. the iron is supposed to at least maintain my levels or hopefully increase them. before my blood transfusions on wednesday night, my hemoglobin was at 6.5. it'll get low again pretty soon as it usually does if i don't try something fast. when i was getting iron infusions- i had 14 total, my hemoglobin stayed above 10 but my iron was still about 20. i don't really care about the iron at this point as long as the infusions can keep my hemoglobin up.

i get my iron checked very often as well as the typical blood counts, iron saturation, ferretin. my levels are just always so low. luckily, my iron saturation is at 5% after my units of blood (it was 2% before that) but it still sucks. i definitely have all the side effects from being anemic.

your reaction definitely sucks but i guess that's what happens if your ferretin is so high or if you don't tolerate the iron. do you still get the infusions now or is your iron/hemoglobin pretty stable? i would be okay if i got a headache- i just don't want to go into cardiac arrest over it. i got terrible hives from my last iron infusion. i'm assuming i just built up an immunity to it. i don't know but it sucks because i was doing really well on them. i'm hoping the venofer will be my lifesaver, really.

pmedic, what is SVT? i probably wouldn't take pain meds since they are known to slow down diarrhea. since i have c diff again, i need to get it out of my body. i will probably start a course of vancomycin again since today has been miserable. it sucks i go to the hospital for one thing and then leave with another problem. i feel TERRIBLE because my mom has had non stop diarrhea, too. she won't go to the doctor (never does) but i think she has c diff now, too. i still have flagyl so i gave her that yesterday. it's not fair since she took care of me and then she gets this.