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Hi, Here is my story. My daughter now 12 was diagnosed in October 2017. A year after a emergency blood transfusion in Dec 2016. She is on 120mgomeprazole & iron since then. She is now gluten free and we find that helps. She has low bone density. History of family auto -immune alapecia, hasimotos. I was ill during pregnancy and she was admitted to hospital with cellulitis age 6 (suggested link to strep and strong antibiotics) and again with influenza A 5 years ago, a series of injuries, knee, ankle, neck, finger, hand. Lives with pain very well, is an inspiration. I just wish we knew more and there was an alternative to omeprazole with Osteoporosis risk. what is the cause and how can we help. lost for step to take to help her and the unknown of her future health worries us both. I am reading all posts and compiling info, on symptoms, medicine (live in Australia - originally Scottish - unsure if medication and treatment available in US also on offer here) and any links. Has anyone else done similar how can we share and learn in a better organised way than one bug long chat stream. Keen to support, learn and share. Sending happy thoughts. We were relieved it wasn't chrons and had prepared ourselves for this worst, so happy i have a 12 year old started high school, outwardly happy and healthy.
Replies to "Hi, Here is my story. My daughter now 12 was diagnosed in October 2017. A year..."
No visable bleeding so slow bleed. She has had no visible, is this possible to experience big visible blood loss? Any signs to watch out for? Anyone wlae has bone density issues?
Yes have bone density issues as on corticosteroid for bout six years. I am young adult now. Also taking Omeprazole one tablet twice day.
Unfortunately I need to take both medications otherwise can have acute large bleeds {large bright blood vomits and large black loose bowel actions). Have had several blood transfusions and many iron infusions. With acute bleeds I am also put on intravenous medication, similar to Omeprazole, in hospital over few days.
You will know if an acute large bleed. Not everyone with CG seems to experience this.
There has been more chronic low level bleeding from stomach wall too requiring iron daily. When taking oral iron it becomes more difficult to know if blood in bowel actions, as iron makes stools black, same as it blood in stools. Black tarry stools can indicate bleeding from higher up in gut. With CG this is stomach. However be aware blood in stools usually has a very distinct odour.
I’m sorry to be so explicit .
Sorry just to add to my earlier email.
It is oral iron that makes stools black.
IV iron infusions or iron injections do not have this effect.
I think we should make a closed Facebook page
What’s wrong with Mayo Connect?
Please tell me what advantages of closed page Facebook?
Hi Mindi (@mindi) and Jamilynne (@jjdenaro) - Since I belong to a couple of closed Facebook groups I can share what I think are the advantages of Mayo Connect vs a closed Facebook group. For what it's worth, this is just my observations...
1. Connect has a many more members than most closed Facebook groups.
2. Anyone can join Connect. That may or may not be true for a closed Facebook group (I don't know the answer).
3. Safety - Connect is much safer vs a closed Facebook group. By safer I mean you are less likely to be hacked, get a virus on your computer from a Facebook popup or ad.
4. Connect contains advertising free patient-to-patient Groups and Discussions where the goal is to allow members to share their health concerns, ask questions and learn from other members what works for them.
5. Connect has a good set of guidelines to protect the safety of the members. You can see them by clicking on the Community Guidelines link at the bottom of any Connect page. Here is the page that is linked:
-- https://connect.mayoclinic.org/community-guidelines/
Don't get me wrong, closed Facebooks can be a good thing and are another source of information which is what we all want.
John
Closed page. Administrator would accept individuals who have diagnosis only. Facebook would attract more individuals with disease and have an open forum. Secondary to mayo connect.
Threads are clearer. And you can post images and additional info. See who we are speaking to...
I am not saying not to communicate on mayo connect. And there is nothing wrong with it
Although we connected. I am very sure it is not a go to site. For support. We could be missing someone who has good information.
I support mayo drs and find mayo connect good. But soTimes hard to follow. I don’t want to miss anything you are saying
Hi Jamilynne (@jjdenaro) - That is a good observation on Connect. Facebook is definitely different and to some is easier to follow (me included!). What helps if people read the Getting Started on Connect and when the post to a specific member always use their Connect username (@username). This will send their post in a notification email to the members personal email address along with a View & Reply button to take them back to the discussion to reply to the message.
Jamilynne, thank you for sharing your thoughts and giving feedback about Connect. I'm tagging Colleen (@colleenyoung) our Connect Director for your feedback as Connect is always interested in improving. You can post images and additional information by using the Add Media button at the top of the post ☺
John
There is a CG Facebook page already. Was started by young researcher affiliated with University California. He was hoping to get some research happening on microbiome in CG sufferers. Google CG Facebook.
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Sorry to hear about your daughter looloo. You mention an emergency blood transfusion Dec 2016. Was that to treat sudden acute large stomach bleed at that time or was it was more chronic slow bleeding from stomach wall?