Support for Fozheart

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dave13

dave13

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Hi all,I received a pm from Fozheart(Carol) and she has been admitted to the hospital.She was admitted for a blockage and facing possible surgery.She would love some extra support from the forum.This is not a planned procedure,she went to the ER and was admitted.

I don't know much more than that...I do know she could use some support right now.

Carol,I'm sending lots of good thoughts and prayers your way.I'm sure Buzzy is too. :heart::heart::heart: Hope to talk with you soon!

Dave :hug:
 
I'm sorry to hear of this, Fozheart has always been a huge support to me.

Carol, I hope you can avoid surgery and are feeling better soon, you've always been there for me and I would like you to know that my inbox is always open if you need anything at all.

Sending lots of love and hugs x
 
Fozheart...I hope you start feeling better soon. Hang in there!
 
Sorry you're not doing well Fozheart. :( Hopefully you won't need surgery but if you do I hope you have a quick recovery and feel a thousand times better. :) Good luck with everything, I'm sure you're in good hands. We're all here for you anytime. :ghug:
 
Fozheart, I am so sorry to hear what you are going through right now :hug:. You have been through so much already. Fingers crossed they won't have to operate, I know they were trying to avoid that. But if it comes to it they will look after you and we will all support you too. You are a strong lady. I am wishing you the very best and sending my support.
 
Thanks, everyone! What a nice feeling to smile for a moment! I came home last night, and my head is still a bit in a different zone, from so much dilaudid, every 4 hours. No complaints about that!

I had gone into ER on Wed, because I could hardly stand up, after having progressively more and more dark, jellyish, tarry D. It was just pouring out, Tuesday and Wed. It looked so scary and voluminous that I actually took a picture, and that picture was worth a thousand words! The Docs all agreed it is blood, but after a CT, upper and lower scope, they are still not sure what the source is. My colon looked good, but stomach and duodenum are very red, streaky and inflammed. (sp?) Biopsies should help answer some of it, and next week I will do the pill cam thing. My doctors have never wanted to try that method before, since I tend to get obstructions from anything that is not soft, low residue. The new doctor just said, "Well, if it gets stuck, at least we know what the problem is!" So..... at least we have a plan!

I have to say that although painful, the hospital was a good place to be this time. I was on a cardiac wing, and all of my nurses, and even doctors, were wonderful.

Thank you for all of your support- it makes such a difference to have friends that understand, because we are all going through the same thing, (with variations, of course.) I think that people who do not have chronic illnesses, do not understand very well what it is that we really need. It is NOT sympathy... it is empathy, understanding! So with that, each one of you has made my day brighter, and I am hoping that you are feeling ok today! I will update as I know more.:ghug:
 
Thank so much for the update fozheart. :ghug:

What a scary time for you! :( It’s is good to hear that you are feeling somewhat better and are now home. :)

Good luck with the biopsy results and pillcam and I hope they provide you with solid answers. In the meantime I also hope you don’t have a repeat of what you have just been through!

Can they not do a patency pillcam test first?

In my thoughts. :heart:

Dusty. xxx
 
Glad to hear that you're home fozheart!!! Hopefully things will go fairly fast for you and you'll be able to feel like yourself again soon. Sending lots of hugs your way.
 
I am going to have to look up patency pillcam test!

I am feeling rotten again- any suggestions for pain relief? Very very crampy pain with D again. Isn't there an antispasmodic medicine? I phoned the doctor's office to let him know, and the receptionist said that my biopsy results have just come in. So.... maybe an answer!

I am not physically hungry, but for some reason, I just want to go to McDonald's and get a happy meal! (Of course, I won't really do it.)

Here is a question: someone suggesting drinking a quarter cup of kefir every day. Isn't that a milk product though?
 
So glad you avoided surgery and they let you go home *hug *.


Not glad to hear you feel rotten! I use buscopan for spasms/ cramps, that might be worth a try. Heat is really good for me, and peppermint helps when I have cramps too.

I understand that feeling, I get the most ridiculous cravings at times.


I'm not really sure what kefir is or how it's meant to help, will have to look that up. Sorry I can't be of more help
 
So glad to hear they avoided surgery. I really hope the pillcam test works ok for you and gets you some answers.

When is the pillcam test? Will you get the biopsy results at the same time? Please let us know how you get on.

I'm sorry you are feeling rotten :hug:. I'm afraid I don't have much advice either, except that I hope that you are taking it easy and getting plenty of rest after your ordeal. Take care.
 
Thanks, Nicola and Muppetgirl! Yes, bucospan is what I could not remember! I will ask about it. The doctor never called about my results. Maybe he is looking over them tonight.

I don't know too much about the pill cam, except that in the past, they have not wanted to do it, because if it gets stuck, they would have to do surgery to get it out. My doctor looks at the positive side of that as at least they would know where the problem is. Anhow, Muppetgirl, the tiny camera takes thousands of pictures as it goes through the digestive track, which is a cool concept!

Sorry that I am so zoned out! I have not read much about how you are doing, Valleysangel?
 
I hope it gives you some relief, I hear its a bit hit and miss but it's always worked well for me. We can get it without prescription in the UK, its sold as IBS relief. My doctors allow me to take up to 8 a day, so you can play around with the doseage to see what works for you, just to warn you it can mess your vision up a little when you first start taking it, so if you get blurry eyes or anything that's normal. I hope you get your results soon, waiting is horrible.

Could they do a dummy cam for you? You swallow a false camera that is the same size and shape as the real one, but its made of material that dissolves in the digestive tract, so if it gets stuck it just harmlessly degrades rather than causing an obstruction.

Bless you, I'm still being closely monitored, being seen every 2 weeks by my IBD nurse, I had a nasty reaction to the azathioprine, symptoms of pancreatitis, so now I'm trying 6mp, starting at 25mg for a month then slowly going to a target of 75. Im still having some pain and things, but doing a little better than I was, thankyou for asking.
 
Hi Nicola,

Yes, the bucospan sounds right...I will ask! You don't get a break either, do you? I am sorry that you have had to go to the higher meds. and that you have had a reaction. I hope that the 6 MP is better for you. I am very curious to know more about your symptoms of pancreatitis. I have read about it, but wonder how one would know the difference of a crohns flare, and pancreas problems! Also, what doctor monitors your pancreas? The Gi, or do you have to go to a whole different one? Everything just gets jumbled in my brain, but you are so smart and know your stuff! I finally am scheduled for the real pill cam on November 6th, so at least there is progress. I did ask in the office today about the false one, and they do not do it. I am disappointed that it is over 3 weeks off, but that does give me time to get all of my ducks in a row. I will have to meet with the neurosurgeon, due to my shunt line that goes down the middle of my abdomen, and is less than an inch away from my anastomy, or whatever it is called. If surgery came up, he would need to be in there. I am hoping the best, with a good attitude, but my biggest concern is that there is no more GI bleeding, and I can stay out of the ER/hosptial until then.

Are you still on a course of prednisone? I sure hope that they can get you back on your feet- you have so much ahead of you! Are you getting any pain control? I need to check when I am not so tired, to see if you have written in your blog lately- I enjoy your posts!

CAROL
 
We have just upped the 6mp so hopefully it will get to work soon. My symptoms were a horrific gripping/tearing type pain that went across the top of my stomach, starting from the left and spanning across, it was like nothing I've felt, my mother said she could see my whole body shudder each time the pain came. Each time I ate or drank the pain got worse, even if it was just a sip of water, and I felt sick. I knew it was different because for me my Crohn's pain is always on the right and towards my pelvis, and although I get cramping pain with my Crohn's it tends to be in the center around my belly button, so the pain was noticeably different. Also, I can normally drink without it making the pain worse, and normally with eating theres about an hour or twos delay in the pain increase. I've been seeing my IBD nurse every 2 weeks, so she's been keeping a check on me and reporting back to my GI. When I had the pain I called her and she told me to come straight off the Aza and then we did a two week rest before trying 6mp. When I saw her she said the symptoms sounded like the beginning of pancreatitis and the improvement with the removal of the aza pointed towards that being the cause. If I had Crohn's higher up then it would of been really hard to know the difference, to be honest before i called her I thought it was a blockage.

I'm glad you have a date now, but the waiting is going to be horrible. You have a great attitude though and I admire your positiveness. I really hope you can stay out of the ER and they can finally get you some proper answers to allow you to move forward and start feeling better.

I am currently tapering my pred, just got down to 10mg today, doing it by dropping 5mg every 2 weeks then having 5mg every other day for two weeks, its a much slower taper than I'm used to, but my nurse says the consultant I'm under now is a little more cautious than my previous one, particularly with younger patients, which I don't really mind. I have cocodamol (paracetamol/telynol plus codine) to take when I need to, and tramadol for breakthrough pain. Aw thankyou :).

Apologies for the essay, I fear I am starting to take over your post.
 
Fozheart, I am glad you have a date for it. I hope things go bit more smoothly for you in the meantime. Please take it easy. That does seem strange they don't offer the dummy at all. Did the biopsy's show any light on things?

It sounds like surgery would be seriously complicated but I'm glad you are meeting with the neurosurgeon. When you have lots of surgeons, keeping everyone in the loop is half the battle.

Valleys, I hope all the ups and downs of your treatment regime culminate in an improvement. You've certainly had patience with it!
 
You are not taking over my thread, Valleysangel- I feel less awkward- I don't like being the focus of attention by myself; we are all sharing this post!:ghug:

You are really going through a lot of medicine changes! I am glad that your IBD nurse is monitoring you, and that you have the ability to describe the changes and pains to her and your doctor so well. You sure are in tune with your body, to know the difference of crohns pain and this new pain! You caught my attention the way you describe the pain as "ripping." I have wondered about pancreatitis, the symptoms, causes, and as dumb as I am, the LOCATION! Does a GI doctor treat it, or do you have to see a different doctor? Anyhow, I hope that switching to the 6MP is helping.

You sure have been on the pred for a while.... I know how that is. I have struggled these past 3 months, not being on it, but it is a good thing, because now these tests are not masked. I think that you are in good hands with a more cautious doctor, in regards to the prednisone.

I figure that having to wait for this next test is kind of good- my house in not in any kind of ship-shape, and I would flip if my mom had to fly in unexpectedly, if I had surgery. I am set on somehow getting things more organized, so I am not embarrassed! Plus, even if I am hurting, I feel this sudden need to just slow down, and start enjoying the little things in life, and to realize that each day is special. Some day I want to write a blog, kind of like yours. I am going to call it "Carol's Cadenza."

Muppet, I don't know why they did not offer the practice pill. I think this new GI is kind of hoping it does get stuck, so as he said, "then we will have found the problem." Interesting bedside manner, huh?

Time to get out my flashlight to read "The Goldfinch" in the dark! My kindlefire broke, so I had to check out the book from the library to finish it. Much easier with the nice light and big old lady font, on the kindlefire!
 
I think I have lucked out with my new medical team, having such easy access to the nurses has made a big difference and they don't fob me off like the last one tried to. I think the GI would treat it, it's tucked in behind the stomach and liver, its kind of long and thin, and is just below the rib cage. I only know this because of the biology that I did in college. Thankfully because it was med induced and we caught it really early, I didn't need any specific treatment, just pain meds, drinking lots and resting. If it wasn't a GI think I think it would be an endocrinologist, since it produces insulin, if that's the case then I'm still covered as I have an appointment with one next week.

I have wondered before if tests I've had have been affected by me being on pred, so maybe you are right that you may benefit from not being on it while you have your testing done and get some answers. I think so too, I really like my new doctor.

I can understand that, but please make sure you pace yourself and don't go overdoing it, you need to take it as easy as you can. That sounds like a good plan to me, its so easy to get caught up and forget to enjoy thinks. I think you would like blog writing, I've found it a good pressure relief and its been a good way to track my progress.

That certainly is a different way of approaching things!
 
That is a novel beside manner indeed. I hope it does not end up being an ouchy approach too! Did he speak to you about how they will approach things given your history if they do go in?

I hope you are able to find little things to enjoy. There's nothing like a good book to curl up with.
 
The doctor has not spolen to me yet directly- I think that I need to do a little research of my own, and inform my other specialsists. I was reading about the pillcam (Nov. 6th), and saw something about needing to not be around things like an MRI or CT machine while the pillcam is in me. Ummm...... that leads me to ask the question: how are those pictured transmitted to whatever the little device I will have strapped to me?! Is it magnetic? If so, I need to call the neurosurgeon about my shunt. It is adjustable (the flow control of the CSF.) The settings are controlled by this little magnetic device that he has in the office. If I were to have an MRI, the magnetic force of the MRI machine would make my setting spin, so afterwards, I would have to go get it reset. So..... If this pillcam thing is a magnetic field, I will have to see neuro afterwards. See.... I am just not too keen on this new GI. He is going to need to look a little further into my complicated history.

In the mean while, you are right, Nicola- I thought I was pacing myself, but have not done very well. Why do the slightest things put us back so far?! Yes, yes..... being on pred can affect your tests dramatically! For instance, when we spent thousands of dollars when I was sent to Mayo Clinic a few years ago when I was on oxygen 24/7, the pulmonary doctor said that my whole problem/cause of the low saturation level was covered up by being on the pred, and that the true story would not be found until I was off of it, and retested. Same thing with my scopes a year and a half ago- they were done while on pred, so everything looked great. So... this time hopefully they will get to the bottom of things, since I am not on anything. When you had that fancy, nuclear scan, Valleysangel, were you on pred?

Sorry to babble- trying to hurry. Poor husband wants to go for a walk, which the fresh air will do me good! I have abour 40 pages left on The Goldfinch. And.... we should not have spent the money, but my husband ordered a replacement kindlefire for me, and got the HDX, so I can skype! Would anyone ever be up for that?! I talk on the phone with one friend on this site, but am sad that I cannot call the United Kingdom!

I hope all of you are having something good happen today, and are feeling well! Thank you for the support and company!
 
It's so frustrating when you have to make sure all the clinicians talk to one another and know what is going on. I find that once things got complicated it was only ever me that was up-to-date on everything. Amazing there haven't been more muck ups really. Do you find that? Did you have hydrocephalus? At least you are on the ball. But your GI should be trying to appraise himself too. What makes you not keen on him?

Hope you enjoyed your walk and rest of your book. I've never got into skyping...i'm quite backward really!
 
I think all of us are backwards! I just skype 1 friend, who I grew up with over 30 years ago. I am so slow, that if I spend too much time on the computer, I don't get anything else done! Yes, I have an anachroid cyst, and the shunt makes it drain continuously, preventing hydrocephalus. It doesn't bother me- it is more less the precautions that are kind of a pain. I can't put my finger on what bothers me about this new GI. I need to just give him a chance, I guess. Maybe I am just spoiled, as most of my other specialists know me inside out. Hmm.. now I have to figure out how to get over to your thread!
 
You have my sympathies...I've had some new consultants lately and even when they are great its not the same. With the old ones it felt like we'd survived all the life changing surgeries together, and a lot of trust is built up in that. With the best will in the world meeting you 20 chapters into the story is not the same, so they are less invested and thats disconcerting. Thats just my feeling though. Go with your gut (pardon the pun), give him a chance, but if you have doubts further down the line, see if you can get a recommendation for someone else.
 
It must be difficult trying to keep track of all your different doctors and conditions and what they are all doing. I have enough trouble keeping mine on the same page so I can't imagine how you must feel.

It is amazing what can knock us back and tire us out isn't it. That makes a lot of sense. When I had the isotope scan I hadnt been on Pred for a few months and that was a very short spell on them, but when I had my first colonoscopy I'd been on Pred for about 2 months at a high dose (60-80mg) and have often wondered how things would of looked if I hadn't.

I hope you had a good walk. I occasionally use Skype, mostly just with my boyfriend but maybe we could see about connecting sometime.


I can totally understand what you mean. I have to go see an endocrinologist today and I'm dreading it, not because of going to the hospital, because of the doctor I might see. My last appointment with them was a year ago and he didn't make a great impression, he just doesn't have the bed side manner of my other consultants (or many manners apparently). It's difficult adjusting to the different personalities and styles of new doctors and the way they run things. I agree though that if you still feel uncomfortable with them in a little while then maybe asking for someone else is the best thing to do.
 
I have been off for a while. going with my gut.... In my heart, I feel like the section of my gut that is affected is going to need to come out, but I am not a doctor, am I? I can just feel, 24/7, that there are some kind of "sores" or ulcerations, on the left side of the small intestine. Whatever they are, it is not like they have just been here for a week, or two, or three- more like months! This is jumping ahead, but are there medications that can heal those sores, without having to go through surgery? (Of course they put me on probiotics and prevacid, which are doing nothing.)

I just feel so "dismissed"... The dumb pillcam is still a while away, so in the meantime, I just feel worse. Sorry... I am out of patience, out of words, and feel like a hinderance.
 
Foz, it is demoralising when things don't improve for such a long time. :hug: I am a great believer that you are the expert on your body. Especially with long term illness, the experience you gain overtime is often reliable in sensing what is up. It isn't fair what is happening, but you have shown a great deal of strength so far and you will find some for this. If it does need to come out then it'll be really hard, no doubt, but they will look after you and you are not alone.

The waiting can be awful and if you are feeling a bit uncertain about your doc then it'll only add to it. A good doc that you've known for ages is like a comfy pair of slippers, lol. You feel safe in their hands and they can take over. So maybe your missing that a bit too. You are not a hinderance, it is their job to investigate and treat your health needs. November is nearly here now, and then hopefully things will start moving...including the pill cam :rof:

Take care sweetie
 
Oh, I just accidentally erased my long reply! Not very computer savy! Thank you for all of your support... the two of you help me stay focused, believe in myself, and of course, think about you and everyone on this forum. I will go to your thread, V Angel to see how your appt. was, and I need to find the one that you started, Muppet. You are right about the doctors, and today I called and got an appointment with my favorite doctor whose opinion I highly value. Hopefully he can give me a sense of who to go with, and I have fun saying that he knows my body better than anyone else! Just very very smart- he is my oncologist/hematologist. I will also appreciate him helping me decide if it would be ok to go visit my daughter at college this weekend. She has her heart set on me coming to hear one of her concerts. She is the concertmistress in the conservatory"s orchestra. We usually get around the intestinal and oxygen problems by goig on a short course of prednisone, but not before this test! VA, good that you were off of it for the nuclear scan, but yes..... DUH, why oh why do they do the colonoscopy when a patient is loaded with steroids?! I am going to check in on you "situatio" thread, and Muppet...I can't find your thread! :(...

Thank you everyone for cheering me on.... that is what this forum is all about, isn't it? Helping each other get through things, understanding, and laughing too!
 
Sounds like a good plan to see your fave doc. Worth their weight in gold. Haha that made me laugh about him knowing your body better than anyone ;). You must make him blush! Or maybe your husband! Let us know how it goes with him.

I hope you are able to go to visit your daughter, its always nice to have something to look forward to and dissapointing when health gets in the way. Bash those health gremlins aside for the day. :eek:rder:

Don't be daft. The bleeding I had stopped a while ago anyway. But if your struggling to find your way around generally, if you click on 'my forum' at the top it should show where you've posted. :thumleft:
 
Sorry I've not responded sooner, I've been away with patchy Internet and am just starting to catch up.


Firstly, I want to say that you don't need to apologise for us for feeling fed up and out of patience. There are no rules to doing this, there isn't an instruction manual to tell us how to deal with it all and you've had far more than your fair share to cope with. Vent to us all you need, it's what we're here for.

We all understand these feelings, it's so frustrating and demoralising when we don't seem to be getting anywhere and when it feels like we aren't being listened to. It's ok to express these feelings.



Urgh I hate technology for that very reason, it's far to easy to loose that nice long reply isn't it. Yay for the appointment with your fave doc, it always make me feel better when I can get in with a doc I know well and run things by them.

You are doing so well and your strength is commendable. Keep on keeping on, you can do this and we are here for you!
 
Sorry that I have not been on here. I feel like I am sinking, but do not have the energy, strength or will to swim to the top, like I have always somehow been able to do in the past. I have tried to figure out what has changed, and all I can come up with, is that I am just tired. A big part of that is from taking benadryl the last few days. Monday night, these very icky hives appeared on my neck and under chin. Definitely hives, with some swelling. I had made chili for my husband, and decided to have a little. I only had a couple of kidney beans, but did have about 3/4 a cup of the sauce. I also had been to our Farmer's Market, and for some dumb reason, bought some fresh roasted peanuts in the shell! I did not have many. So.... these hives must have been from either one of those foods, which I have never had an allergy to before. All I can think, is that thank God the allergic reaction is on the outside, rather than inside my throat! They are clearing a bit- if not for my test tomorrow, I would have taken prednisone. (with my doctor's approval, of course.) I am thinking that it would be smart to continue the benadryl, but if I take it now, and throughout the day, I will NEVER be able to get out of this house. I have secluded myself, as it is. I should go to the park and take a walk- I need to regain some strength, and get things moving so that I am clear for the pillcam test tomorrow. I am pretty nervous about it getting stuck. I did see my wonderful oncologist last week, and he agreed that I should go ahead with the test, even if it does lead to surgery. He looked at all of my bloodcounts, before and after my hospital stay, and said that I had lost 2 pints of blood. (I am back up to normal.) So.... hopefully the test will give the the answer as to where the GI bleed was. But I am not bleeding now, so how will they know? I will go to the GI office and swallow the pill at 8AM, and return at 4PM for them to remove the monitor belt. I am on clear liquids today. Any suggestions? I know that I need to drink as much water as possible. A good friend made a big batch of homemade chicken broth.

Sorry this is kind of mixed up and bland writing.... I need to get back to the normal me....still mixed up, but not this bland!

Thank you for reading this, and for all of your support! (Muppetgirl gave me a much needed nudge, and I talked to Dave13 this morning. (He has very exciting news to share with us!)
 
Just to say all the very best for tomorrow. And glad to hear you got the support of your oncologist. With that much blood lost I would guess there is a chance they will see a wound / fresh scar tissue even if its not still actively bleeding. We will be rooting for you. Update us with how you get on. :ghug:
 
Thank you! I just hope that the test sheds some light on the problem. I am a bit nervous that I am not cleaned out enough... I did my clear liquids all day, but can feel that even the liquids are backed up... I should have done an enema, but too late now. I hope that that the pictures are clear. Ok.... will report back tomorrow! Ohhh.... even though I am full from all the liquids, I wish I could drink an Ensure! I think I wil be able to do so, around noon. Maybe if I get up early and take a good walk before I go to the dr. office, t
 
Thanks, everyone! Cross-stitch, I swallowed it at 8, and return to the office at 4:30. How was your appointment?????
 
Crossing my fingers that things went as well as they could and that one way or another an action plan will emerge from this...
 
I am kind of thinking that the camera is still sitting in the area where I had the colostomy and hernia, I will find out next week what the pictures showed. I am not too worried at this point, because if it is stuck, Maybe I will get to have a course of prednisone, which would be a treat for my whole body!
 
Just make sure you're not in any pain. If it's causing you pain, please let them know or go get checked out. I hope you get the results you're looking for! Take care.
 
After dinner tonight, I felt a different pain... kind of "pokey." I want to google and find a chart of the pathway through the small intestine. I am not letting myself go into panic mode, since it is bearable. Just going to say some extra bedtime prayers! Are you feeling better? It will take a few days for your biopsy results, right?
 
If it's bearable, ok. Just getting a bit protective I guess.

Yes & no. Still a bit groggy, but I was able to work today/tonight. Gotta take things a bit slower eating wise till I'm "back to normal". As much as I don't want to.

Yup. It'll be a few days before the results are back. Clinic called this morning though to check on me. Never had that before with my old GI. Even though this was the 2nd year with this doctor, I'm still getting used to the way he does things. Not used to being this much taken care of!
 
I am just catching up with everything. I'm sorry you are having such a tough time. Count to ten and take a deep breath. That pond your at the bottom of, we're all by the side and when your ready we will help you to shore. We all have times where things are hard and getting on top of us and we're all here for you.

I hope you get the answers you need from the pill cam and it doesn't cause you more issues. Keep an eye on that pain, if it gets worse and starts to concern you then please get yourself checked out.
 
Thank you- I like that about the pond... knowing that all of you are there to help me gives me belief that I can somehow get to shore!

This night has been quite rough. I had a few hours of pretty intense localized pain, which started in church. I somehow got down a cup of broth, and then a cup of tea. I passed a little something, including air and a few unladylike burps. That took some of the pressure off. I feel like I had better work hard around the house tomorrow, and get my papers in order, in case I end up in surgery. My mom would come from Illinois, and would not be too impressed with my housekeeping! It is silly- the things I worry about!

On a good note, I have met all of my deductibles, and will now not have to pay one cent for anything, until July! Woo hoo! (I need to figure out how we are going to pay all of these doctor, hospital, radiology, etc. bills.)
 
Yes, I know exactly what you mean about moms. We make sure to have quite the cleaning spree before my parents show up for a visit. Difference is, they only live about 1/2 an hour away. I'd say not to worry about it, but if your mom's anything like mine she'd snoop around where you don't want her (mine will do it right in front of me & start asking questions about what I'm not sharing). :ybatty:

I totally understand about the doctor's bills too. However, I hope you can be taken care of soon. We're all here for ya. Please keep us updated on what's happening with you. Lots of hugs to you. :hug:
 
Sorry I am behind. The lovely camera is stuck. Lots of pain today, and throwing up. I can actually feel it through my skin. It is located at the spot of my old colostomy. Well... let's see what they decide tomorrow,,,,,,, I hope the day was better than mi, my dear friends!
 
I agree I hope you are being seen / looked after now. Intense pain and vomiting I associate with complete obstruction and time is of the essence. I am thinking of you. Please update us when you have a moment. :hug:
 
Thanks, girls! It is like taking a slow boat to China, with these doctors, but I think that with much pain, that camera is out maybe. Dr. is still supposed to do an xray. He finally looked at the test, and his secretary called to inform me that the blood loss must have come from a small group of AVMs, in the small intestine. (Arterial venous malformations or something like that.) I read a little about them, but have decided to wait until I see him.... sometimes googling things just makes things worse. From what I read, I understand an AVM to be like an area of blood vessels that are kind of tangled up, and they can break and cause bleeding- slow or fast. I was seeing dark stools and feeling pretty poorly for several weeks before I really let loose and ended up in the hospital. I also read that they can be caused by obstructions, which I have had in that area for over a year. In 3 weeks I am going to VCU in Richmond, to see a very well known GI doctor. All I want is a plan to follow, to do what is needed to stay as well as I can. But hmmm.... I am thinking that I might finally need to put my clarinet away for good? Playing puts a lot of pressure on things. It is hard, after it being my profession, and playing for over 30 years! Anyhow, I am relieved that at least the test showed something, and maybe now we can address the problem.
 
I'm sorry that it is yet another thing to contend with in top of everything else :( . I hope they can get a hold on it. Please take care while you cannot be sure it is out.

I'm sorry it is impacting on your playing. Its really tough. I'm guessing that playing is your passion and a part of you as well as your profession. Its very hard when the ill health interferes with that. Do you play any other instruments that would put less pressure on things?
 
Too tired to write much. Was in ER again last night. The cam did pass, and boy was it a new shape that I have never seen! It must have been wedged in a strange place.... it looked like a gianormous arrowhead triangle that came out, which was flat and I think lodged behind my scar and rib! But then I had searing burning pain, and yesterday afternoon developed those dreaded waves of piercing pain, similar to when I bled, and also similar to when colon perforated. I could not stand up straight. The ER was terrible this time. They would not call any of my attending doctors or the GI! Gave me dilaudid, and a script for Bentyl, which has lessoned the intensity a bit. I am going to try to get into MCV early. It was strange... being on my feet for a long period of time seems to bring the contractions. I guess I just need to lay around like a slug, until I get to VCU.

Yes, my clarinet defined me in a way, because it was my main way of expressing myself- through the music. I do play in a Wind Ensemble, and have been fortunate enough to be put back in the percussion section when I cannot play clarinet. I love it- the pressure, learning something new, and just playing lots of different sounds. The standing chimes make me feel like I am calling up to heaven or something, they waythey ring, and I love beating the claves! On Sleigh Ride, I am playing the part that makes the whip sound. Fun!

Anyhow..... do you know anyone to tag, who is familiar with AVD's?
 
Glad to hear that the cam passed, but boy oh boy what a pain you've been going through!!! At least you can still play your music! Hopefully you'll eventually be able to play your clarinet again though.

I'm afraid I don't know anyone to tag though since I don't know what AVD's are. Sorry I can't be of more help.
 
That sounds awful. I'm sorry you had such a miserable night. I'm glad you got checked out but sad that it was a negative experience. Did they say why they did not contact GI?

I'm glad you still have some instruments to play and somewhere to play them. It sounds like a lot of fun to be had with it!
 
Ouch! That sounds horrid. I'm sorry you had such sub standard care, unfortunately patient care seems to be going down the pan in a lot of places.

I'm glad you are still able to enjoy music in some ways. I sang in choirs as a child and play instruments too, it's such a release and I can't imagine what I'd do without music. I hope you can find a way to still be able to play your clarinet too.
 
Thanks, ladies! Woo...my days are getting shorter and shorter! I am pretty much back to bed within 12 hours! Why do we get so tired ? Yes, Nicola- I read about your music on your blog, which I have not checked in a while. Flute, right? Well, bedtime for me... tomorrow is another day!
 
Bless you, have you had your vitamins etc checked?

Yes, flute, guitar and piano and I sang in choirs as a child.. I hope you are feeling a little better now
 

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