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10-10-2014, 05:18 AM   #1
dave13
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Support for Fozheart

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. Hope to talk with you soon!

Dave
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10-10-2014, 05:43 AM   #2
valleysangel92
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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
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
10-10-2014, 07:36 AM   #3
DJW
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Fozheart...I hope you start feeling better soon. Hang in there!
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10-10-2014, 07:47 AM   #4
Tony H
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Hope everything goes well Fozheart .
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10-10-2014, 10:14 AM   #5
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All the best to you.Your Forum Family are with you all the way.
10-10-2014, 12:44 PM   #6
Jay Woodman
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@Fozheart ..Thinking of You : )
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10-10-2014, 12:47 PM   #7
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I hope everything goes well and they can fix everything with out having surgery. We hope a speedy recovery.
10-10-2014, 01:15 PM   #8
Jennifer
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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.
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Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
10-10-2014, 04:19 PM   #9
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Sending hugs and best wishes for a speedy and least invasive recovery. Not fun
10-10-2014, 06:26 PM   #10
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Fozheart, I am so sorry to hear what you are going through right now . 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.
10-10-2014, 10:32 PM   #11
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Oh no
I hope that you start to feel better Fozheart!
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10-11-2014, 01:54 PM   #12
fozheart
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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.
10-11-2014, 04:20 PM   #13
DustyKat
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Thank so much for the update fozheart.

What a scary time for you! Itís 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 donít have a repeat of what you have just been through!

Can they not do a patency pillcam test first?

In my thoughts.

Dusty. xxx
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10-11-2014, 06:13 PM   #14
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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.
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10-14-2014, 11:19 AM   #15
fozheart
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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?
10-14-2014, 12:34 PM   #16
valleysangel92
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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
10-14-2014, 05:58 PM   #17
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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 . 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.
10-14-2014, 09:19 PM   #18
fozheart
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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?
10-15-2014, 04:31 AM   #19
valleysangel92
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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.
10-15-2014, 10:12 PM   #20
fozheart
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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
10-16-2014, 08:58 AM   #21
valleysangel92
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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.
10-16-2014, 11:42 AM   #22
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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!
10-16-2014, 10:49 PM   #23
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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!

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!
10-16-2014, 11:27 PM   #24
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I sure hope you get on the path to recovery soon!

Lauren
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
10-17-2014, 03:04 AM   #25
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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!
10-17-2014, 07:45 PM   #26
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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.
10-19-2014, 11:45 AM   #27
fozheart
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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!
10-19-2014, 06:33 PM   #28
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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!
10-19-2014, 10:59 PM   #29
fozheart
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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!
10-21-2014, 05:30 PM   #30
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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.
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