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Crohn's Disease
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Posted 7/24/2010 6:42 AM (GMT 0)
I don't know what to do anymore.My doctor doesn't know what to do he said my iron levels low cuz he thinks not absording it and said wait until 3 months from now still have it have me try iron influsions just pray to god make a differents.. I have no energy ever. So extreme fatigue. I try different things like I started taken tons of vitamins and b12 and juicing and nothing seem to help. All I do sleep until like 2pm next day . Every time sit somewhere I fall asleep . I feel like life just passing by. Whenever its nice out am inside. Cuz all I do want to sleep and feel so sore and achee like someone hit me with a bat. Just want be like everyone else whenever nice outside I want go outside and do things and enjoy my life but feel like crap.I feel like life just passing me by not getting out enjoying it. Cuz seem like alway one thing after other when comes to my health. Cuz seem like get one thing then get other . Also my doctor told me don't ovulate and he thinks cuz of my thyroid problem told me can't ever have kid naturally. Have to have special help which sucks and is so depressing. Also been waiting on see get ssi and also frighting medcard. Cuz my lawyer said have biggest health records ever seen also with learning disablies... Cuz I have crohn's disease and hypothyroidism and gerd and endometrosis and mitral value prolapse and bad headachs and mood disorder and ulcers
Posted 7/24/2010 1:52 PM (GMT 0)
If you are having trouble absorbing then the iron infusions might be a big help! B12 absorption issues are common in Crohn's, so it might make sense to get a B12 shot right away. 

Which medications are you on?

Posted 7/24/2010 11:05 PM (GMT 0)
Miranda, I know it's overwhelming when everything seems to be going wrong at once, but my suggestion would be to select a small part of the puzzle and try to work on that.

I think it's really, really, important that you try to get some sunlight, especially as you so want to get outside. Do you have a garden, a verandah, a balcony that you can get to? Failing that, can you open your curtains and windows and make yourself a comfortable nest where you can sleep and dose and drowse in the sun?

Sunlight is really important for the maintenance of Vitamin D, as well as mood and energy and sleeping patterns, and I think you're just going to feel worse and worse if you don't get any.

Keep hanging in there. It's horrible to be missing out when everyone else seems to be having fun.

Ivy.
Posted 7/25/2010 1:32 AM (GMT 0)
Gosh Miranda, I am soo sorry you are not feeling well.  Please don't feel bad about sleeping so much, your body is telling that is all you have strength for.  When you feel better then you will have more engery to do more. 

Please also understand that you can never eat or take enough vitamins to restore such a low iron level - it just isn't picked up that well.  Your doctor is doing the best thing for you by giving it in IV form and it will take some time for you to feel better.  So really, just look at it as your body is protecting itself and you get to help it heal for a bit.  This is a bad patch but soon you will get through this and will be able to feel a bit better.  It will take some time though so be patient! 

Take care and be blessed!  Barb

 

Posted 7/25/2010 7:55 AM (GMT 0)
The medicines I take pentasa 500mg 3 morning and 3 evening, nexium 40mg one in the morning and one in the evening. levothyroxin 100mcg in the morning, Lidocaine 2% whenever I need for the ulcers I have mouth 24-7 , Amtriptyline 50 mg one at night, proventil inhaler as needed, femon fe 0.4mg at night, maxalt 10mg as needed, Dexamethasono 5mg as needed for the ulcers, prenatal, bcomplex, b12, d3, citracal take every other day...
Posted 7/25/2010 7:58 AM (GMT 0)
Also I wish I could go out in the sun alot but if the sun hits me in the eyes wrong get mirane headachs and also I have problem where get to hot get very weak and have get drink and snack right away or pass out for some reason and also elipsey if it hits me wrong way in the eyes the sun i have seizure and My eyes don't reflect light and sun like everyone else does so if the sun hits me front of my eyes sometimes cause me black out...
Posted 7/25/2010 10:31 PM (GMT 0)
I have problems with the sun/heat as well due to lupus, but I am on an iv vitiman cocktail. I wonder if that might be helpful for you.
Posted 7/26/2010 4:35 AM (GMT 0)
Yeah the doctor I have now. Whenever tell him what going through or just having no energy and being extreme fatigue and tired all the time and achee and so sore all over and in my joints and muscles being so weak and getting shortness breath . He just say well going have get use that cuz cause by crohn's . He told me my iron levels low but going wait other 3 months see if they change then sent me see someone for iron influsions. Also stuff he told me eat I told him makes me sick and can't eat it anyways cuz of my ulcers alway in my mouth only eat few things. Also try every medicine for ulcers and nothing helps cuz my doctor doesn't want put me on any stronger drugs or steriods cuz he say cuz side effects they have..
Posted 7/26/2010 5:38 AM (GMT 0)
Is there anyway he would just give you the infusion now without waiting? Why does he want 3 months? If it hasn't gotten better yet without it probably won't get better? I had a very low ferritin level, etc. I passed out three times twice in the shower and once inside American Eagle. My PCP wasn't able to figure out why so my mom insisted that the PCP refers me to a hematologist. Well the hematologist noticed right away all my levels were messed up. The day after seeing her I was in her office again for an iron infusion. I have not passed out since that infusion and it has helped so much. I am tired still but not as bad as I was. My Dr said you can eat as much food that contains iron or take iron pills and if your level is really low taking or eating that stuff will take forever to help you if your not absorbing it to start with. Since my transfusion the level has dropped but she checks it regularly and it has not gotten so low were I need another infusion. I was tell him you want it now you'll feel so much better!
Posted 7/26/2010 5:52 AM (GMT 0)
Yeah alway been so anemia. Where if get up from sitting or something start blacking out for few seconds and done in the shower before been so weak and tired. My doctor that way about everything where put stuff off. Just like whenever tell him experiencing something new he will say well I don't want have them do more test on you and find out more stuff wrong with you cuz then just be on more medicines. Sometimes I feel like whenever tell him what am experiencing like doesn't believe me. But only been with this doctor for two years whenever I found out had crohn's disease. Also one time went seen blood doctor and he couldn't believe how low my levels were told him couldn't handle the iron . He said wanted take piece of my hip bone see what causing all the bleeding. But I told him my periods and from crohn's . But am on birth control now trying control it. Cuz my doctor also said reason why getting shortness of breath he said be cuz of the anemia and not enough oxygen getting blood vessals and just gave me inhaler for it. Cuz lowest mine was a 3. Alway had such a problem with being anemia. Been telling the doctors I go that can't handle iron pills. Problem with this doctor tell me what going try next time then when see in 3 months usually forgets... But I pray to god that he lets me get iron influsions cuz my bf thinks its stupid make me wait.
Posted 7/26/2010 6:02 AM (GMT 0)
I hope this helps you. I just got my medical records, blood work out etc. To see what my levels were when I had the infusion.

8/14/09

Ferritin- (L) 5.9 ng/mL (Normal range shows 23.0 - 336.0)

Iron- (L) 22.0 mcg/dL (Normal range shows 28.0 - 170.0)

Iron Saturation (L) 3% (Normal range shows 20-50)

TIBC (H) 553mcg/mL (Normal range shows 255-450)


My B12 level was 98. I now get the shot every 3 weeks. So after the infusion and getting the shot every 3 weeks my levels have stayed somewhat in the normal range. You should ask for copies of all your blood work to see what level you are and if you feel it's very low get a 2nd opinion and see if someone else will give you an infusion sooner. It's not nasty like the pills and once you get one shouldn't need another one for awhile!
Posted 7/26/2010 6:07 AM (GMT 0)
That is crazy he says that to you! I think you should search for another GI. He can't be putting stuff off like this. You are given one body and one body only in our short lives. So you need to keep it healthy as much as possible. If you are telling him you can't take the pills which I don't blame you they are nasty!! He should say you need the infusion now because it's not going to get any better it will just keep getting lower. Plus best thing is about the infusion it's just the IV and the iron so it goes right into you and you don't taste it or anything. If you are saying you have other problems and he puts those off because he doesn't want to run the tests because then you'll need more meds that is just insane. You should look for a new GI asap. Find one who cares about you and your health and how you feel mentaly. Most should care about that as well and want you to get better. Do you like your PCP? You should ask them who they recommend you seeing instead. Or ask your PCP to check your levels and mention the iron and see if he or she will do the infusion.
Posted 7/26/2010 6:33 AM (GMT 0)
Well my medical doctor the one like that. Suppose be leaving in a year should get different. But I haven't ever been this hospital much just started going there few years ago whenever found my crohn's and then they just sent me different doctors think I would need. My gasterogist he left so I will be seeing new one in sept. Just hope he cares more. Cuz other one goes so rushrated with your mouth isn't even funny cuz no matter what pasta or mouth wash try haven't ever gotten ulcers go away in my mouth had sense been baby so had for like 26 years.Also whenever tell him problems been having his people write them down but he wouldn't do anything about it. cuz he said unless losing weight were not going change your medicine... So he goes so many risk when go down that road... He goes well if nothing we have been giving helps them most likely nothing will...
Posted 7/26/2010 6:38 AM (GMT 0)
Last time test my b12 said it was 250 but the guy said just don't ever know b12 cuz go up to 1,000 . I don't get what that means
Posted 7/26/2010 6:47 AM (GMT 0)
Glad to hear the jerk is leaving and you will be seeing a new one in Sept. You should set some ground rules for your new one and let them know what you expect from them. If and when you go over these with the new Dr and you feel they aren't caring or are like the other Dr you should search for a new one. But let's hope this one you'll see in Sept actually cares about the patient and wants you to get better and will try new meds etc. I was told that a good B12 level is anywhere from 180-1000 but can realy depend on the person. Well I hope that this new Dr in Sept sits down with you and goes over everything and goes over how you feel and what seems to be working for you and what isn't. Best of luck!
Posted 7/26/2010 7:01 AM (GMT 0)
Yeah my problem is whenever a doctor isn't being so nice to me or acting like he or she doesn't care I won't stand up to them. Because I don't want be one of those patients that say hard patient deal with and stuff. Cuz very sweet person just don't want doctor ever think being mean if i say something about what I think he's not doing... Whenever my boyfriend tell me stand up for myself more but also very shy...Also I live small town and use see the all the doctors around here known me most of my life. But I deside go to a hospital two hours away hoping get better care and figure out what has been going on with me. Just like been doctors after doctors trying find someone help me with ulcers. Cuz alot of times barely eat anything because upsets them and get swollen and bigger and worse pain ever where can't even talk sometimes.
Posted 7/26/2010 7:03 AM (GMT 0)
Just like before whenever had this one doctor had to go to cuz health insurance at the time tell him how sick I was and the problems having and he would just I believe anxiety where don't ever eat and throw up like oh my god told him I didn't . So I deside go to this hospital that am at now to prove him wrong. I did cuz had crohn's. But now have medcard frighting keep it. Cuz been sick alot my life. My lawyer said have biggest medical records seen. So I have go after the state.
Posted 7/26/2010 7:07 AM (GMT 0)
I know what you mean. But by telling the doctor how you feel or suggest what you think may help you isn't be being mean or rude to them. If you did say something sometime if you were upset just think there are worse people out there who are a million times ruder then you'll ever be. So I'm sure they won't think you are being that way even if you think you might be. Does your boyfriend go to your appts with you? Next time you should have him go if he doesn't already. He might be able to tell the doctor something you forgot or don't feel comfortable asking. I'm sure being in a small town can be hard as everybody knows everybody so lets hope going 2 hours away ends up getting you a great new doctor in Sept. I'm sorry you are in so much pain with the Ulcers. Is there something your PCP can do to help until you see the new GI in Sept? How long have you had Crohn's?
Posted 7/26/2010 7:14 AM (GMT 0)
Yeah he goes to me with every appointment. Cuz he knows very shy and won't usually look them in the eye and then look at him like don't believe me or like wanting hear from him. I have had crohn's they found it 3 years ago. But alway had problems with my bowels and bleeding from there even when teenager and didn't know what causing it. Also my mom said when born alot of times turn purple and blue cuz I couldn't ever go number 2. Well they have try every medicines think of for type of ulcers I have in my mouth cuz they said pretty much all you can use is pasta and mouth wash. Like had me trying this oral mouth wash that steriod just swish it and split it out.
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