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Posted 7/4/2013 2:14 AM (GMT 0)
Well, I was kind of hanging out and waiting out my flare to see if I could stabilize. My latest blood work shows anemia again and my heart is back racing, and my low grade fevers are back again! Big sigh!! I called my GI, but I don't think he's back in the office until Monday. I guess I can't keep putting off my colonoscopy. My pill cam was completely clear in May, but something is cooking in there. This really is a quite annoying disease....had all sorts of plans for my boat and the 4th of July. Oh well, here we go again!
Posted 7/4/2013 5:28 AM (GMT 0)
Hi grumby44, Sorry your not feeling Well. I would not put off
getting a colonoscopy any more that way you can see whats going
on.
Posted 7/4/2013 2:53 PM (GMT 0)
Hi Gumby44, also sorry to hear that you are not feeling well again.
I agree with you that this disease is so frustrating and un-fair!!

At least if you get the colonoscopy done you should have a better idea of whats going on, although I know they are not much fun :(

feel better soon!
Posted 7/4/2013 6:13 PM (GMT 0)
Bummer, augment your diet with Fe supplements. Call the office, he has to have a back up plan when he's not available. Bend the staff's ear, hoping you can get some attention soon.

T

Better Living Through Chemistry
Posted 7/4/2013 8:03 PM (GMT 0)
Thanks everyone. I can't handle iron supplements because I tend toward constipation and it makes everything worse. I'll try to hang in there until Monday. I think I need an iron infusion and a colonoscopy, which are both things that can't be dealt with over a holiday week-end. If my fever goes high, I might call the doc on-call.
Posted 7/7/2013 3:48 AM (GMT 0)
Humbly, I have both a iron infusion and another colonoscopy coming up in August, if I make that long. I have the iron infusions about ever 6-7 months and this colonoscopy will be my lucky number 13! The scope is too see how the humira is doing. I can say not great, but they want to confirm it. And my afib is going crazy the past month due to the anemia and the humira.
Posted 7/7/2013 1:36 PM (GMT 0)
Hi Miropwl,
Sorry to hear you are not doing well. How do they decide when to do the iron infusions? Is it based on lab results or do they just routinely do it every six months??
Posted 7/8/2013 12:07 AM (GMT 0)
Hi Gumby.  they do labs, in fact they pull iron levels and anemia every 2 to 3 months.  My GP monitors most things, but she sent me to a hematologist.  the hematologist looks for very specific markers as she calls them which would trigger the need for iron infusion.  she said I will need them for the rest of my life as I can no longer absorb iron in my system.  She projected about every 6 months or so as when I will need one.  so far I am getting ready for my third one and they have been like clock work every 6 months.  She looks specifically at my ferritin levels. 

hope this helps.  my best advice is have an great general Dr who oversees all others.  my does and interacts with the GI, the cardiologist, the hematologist, the nephrologist, the dermatologist, the rhumotologist and lastly the brain surgeon...I have a begnin brain tomur they look at every year.  I have worked hard the past few years to get all my doctors who are all on same computer system so they can all talk...which is a good thing

 

Posted 7/8/2013 12:26 AM (GMT 0)
Wow Mirowpl! You do have a lot going on...I'm so sorry! I love my GI, but my GP is kind of useless. I'm calling my GI tomorrow, so I'll see what to do next. My ferritin went from 47 down to 12 in a month and my other iron levels are all dropping too, so I'm getting concerned. Thanks for your advice.
Posted 7/8/2013 12:57 AM (GMT 0)
time for IRON!!!! I dropped from 310 to 125 in 45 days. that was about a month ago and now how tired I am feeling I am sure I am well below her min level of 60. Plus I had a horrible night last night.....15 BMs + all ikn about 3 hours...ugh
Posted 7/8/2013 6:20 PM (GMT 0)
Hi Mirowpl,
I finally spoke to my GI. We are scheduling an iron infusion again and a colonoscopy. Just waiting for the dates from his office Thanks for your help and support. Sounds like you are in quite a flare of your own! Are you still waiting until August?? Sounds like you need the GI now.
Posted 7/8/2013 7:38 PM (GMT 0)
I've only had iron transfusions when my haemoglobin has dropped to 7-8. In January this year my haemoglobin was 8 and ferritin was 5. I had a Ferinject iron transfusion and that sorted my iron levels right out. Once, when I was in hospital for a week, I had a blood transfusion.

I hope your iron transfusion helps; good luck, gumby :p
Posted 7/8/2013 7:49 PM (GMT 0)
Gumby...so sorry to hear that things are not improving like we would like them to!  Hopefully that iron infusion will give you that boost to climb back up the hill.  Until you get that and the scope, please be gentle on yourself and don't hold your day to higher expectations.  Let yourself heal with some taking it easy on you time too.

Best wishes

Posted 7/8/2013 9:17 PM (GMT 0)
Gumby,

I hope the iron infusion works...sending my support.
Posted 7/8/2013 10:34 PM (GMT 0)
Hi, and thanks everyone for the support. I guess my doc's thinking is that while my anemia isn't extremely severe yet, I'm clearly going in a downward slope, so doing the iron transfusion now makes sense before I get any worse. In a month, my hemoglobin dropped from 12.6 to 11 and my ferritin dropped from 47 to 12. It sounds like the earliest I can get an appointment at the infusion clinic is Friday...don't know when my colonoscopy will be yet.

Meanwhile my 20 year old daughter has been having abdominal pain for several months and she's getting where she's barely eating and losing weight. She saw our internist who prescribed Dexilant, which did no good. She has no C or D....complains that every time she eats anything her whole stomach and abdomen hurts. I did give her some anti-spasmodic, which helps a little. My GI said he'd see her, but we need a referral and with a new patient it will probably take over a month to get her in. She is under tremendous stress---issues with boyfriend, roommate, college stress, etc. She does get very visibly bloated after eating. She had a colonoscopy around 2.5 years ago which was totally normal. I strongly suspect IBS...talked her into seeing a therapist for the stress issues. But she's moaning a groaning and in severe pain almost daily....(worse than me, and I tend to whine). I'm tempted to take her to the ER, so they will at least do blood work, and maybe a CT, but I don't know what to do. I am telling her that if the pain gets to a 7 or 8 out of 10, then we should go. Any advice would help. I don't want to over-react, but I don't want to under-react either.
Posted 7/8/2013 11:22 PM (GMT 0)
I came here after reading your reply in my thread; I may as well reply here now!

Firstly, I think it does make sense to get an iron transfusion now instead of waiting to develop severe anaemia. The only possible risk is an allergic reaction, but you'll be in hospital and well monitored.

Secondly, I'm sorry about your daughter :-/ Does she have a GP? A GP can at least run a blood test. In the UK you have to see a GP to get a referral to a specialist anyway, so there is no skipping that step. But it would be far better to see a GI and get all the proper tests done. ER is a bit basic, unless they admit you into hospital: then, as an inpatient, you can get access to various tests far quicker (well, sometimes). But if they don't admit you, then you're kind of back to square one.

It's a difficult one. Hesitant to recommend painkillers and doctors are reluctant to prescribe them, anyway. Does all food cause the same pain or are some foods worse than others? Thinking maybe your daughter could go on a bland/liquid diet for now, if that's better tolerated?
Posted 7/8/2013 11:36 PM (GMT 0)
Hi and thanks for the response NCOT. She's a vegetarian, and I keep telling her that all the fiber can make things feel worse. But she has had many days where she has only had white rice or very bland foods and she is still having problems. She has also been going through funks where she barely eats or drinks anything, and she sees that that makes things worse. I like your idea of calling back the GP tomorrow. I called and asked that he fax a referral for the GI, but I think he needs to help her out in the meantime. She is a giant stress mess, and honestly she can be quite mean to me at times lately...but I'm probably her safest person, so I'm just ignoring the theatrics for now.

I just told her that I don't live in her body and she should trust herself. If the pain gets unbearable, I'll bring her in to ER and if not, we'll call her GP tomorrow. Watching her suffer for me is far worse than being sick myself!!! Thanks for the help. I'll let you know what happens. Oh and I just had an iron infusion a couple of months ago, so I'm not really worried about allergic reactions....I tolerate it fine.
Posted 7/8/2013 11:47 PM (GMT 0)
Hi Gumby...glad you have the infusion scheduled. I am calling the GI tomorrow although I double checked my calendar and I see him in 2 1/2 weeks. Also I will be calling the hematologist about the iron. she said to call once I could feel like I wasa dragging and she would just schedule it for me over the phone.

My fingers are crossed for your daughter.
Posted 7/9/2013 12:19 AM (GMT 0)
Thanks...let me know how you do too.
Posted 7/9/2013 7:12 PM (GMT 0)
Pain and stress will make anybody except a saint mean and moody. It's not pleasant being at the receiving end of it, but it really isn't personal... *she said, being like that with her own parents >.>*

Even starvation/dehydration can have profound effects on a person's mental health. If your daughter is barely eating/drinking anything most of the time, that will be having a negative effect on her as well. It's as simple as the brain being a complete resource-hog and requiring lots of energy to function optimally.

Good luck to you both, gumby!
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