I have been anemic since 2007, I receive IV iron infusions monthly and blood when required, which lately it has been bi-monthly. We can not find the bleeding after many diagnostics. I am on a new...
Ya, that is the problem. I have been scoped, they can't find it. It is so frustrating. I am on my second specialist now. No one knows what to do with me. They tried the fake camera capsule on me and...
My hemotologist says that my blood work indicates bleeding. Just can't find it. I do have black stool sometimes and maroon stool sometimes and normal sometimes. I hate this disease!...
Needing blood products monthly now. What the heck! Had a double balloon endoscopy, showed nothing?? I just don't know what to think or do anymore. Anyone else with this issue? I feel fine for the...
Just can't seem to get a handle on this bleeding issue. i know I sound like a broken record. It has been since 2007. But now it is just worse. My CT enterography showed no active CD, but yet my...
Does anyone else have problems with anemia and has been taking cholestyramine (Questran). I think I may be onto something here. For myself anyway. Can't wait till Monday to talk to the Dr....
Julia Hill, hi was wondering if you could contact me through email. I have anemia questions for you....
Really? Surgery Feb, 10 was in hospital 3 weeks, home 1 week and I think I saw blood in my stool. Can this really be happening? I also am having that same burning sensation on my side that I had...
Walk, walk, walk. Oh and t3's have codeine, constipating. Have been home since Tuesday night and today a have gas pains. Not enough walking. Glad to hear you weathered surgery well...
My surgeon made the decision when he was in there. There turned out to be enough room to resect without being to close to the ampulla duct. It was the best case scenario for me....
I just had an open surgery to resect my duodenum. I though I would have been out in 7 days. That was on feb 10. I am still here. Ya it sucks but the body heals on its own time. My advice is to try to...
NG tube comes out today. So happy. Must continue to advance diet very slowly. Will be on soft food for quite a while. Thanks for the comments. I needed to hear them....
Was able to keep down two liquid trays of food today. Things are progressing. The NG tube has not been hooked up all day. Broth never tasted so good lol....
Less fluid is coming out of NG tube and having some gas movement. This can only be good news. Trying not to get to excited though...
Healing so well on the outside. Just need time for the swelling to go down at the resection. Just need patience I guess. A little worries that they may have to go back in. But only time will tell....
Finally had this resection to stop the bleeding. Now my hemo is great but still have NG tube in and on TPN. getting a little worried. Ct scan showed edema (swelling) at site. Any comments?...
I have iron infusion bi-weekly and blood transfusions every 6-8 weeks because of a bleeding duodenal Crohn's ulcer. I go through the same process as Sammie. Never had a reaction. You will feel...
been every week for a year, no side effects....
I think I was wrong, I am on Entocort, that is not 6MP is it?...
HOLY CANOLLI!!!! NCOT, I don't know if you happen to read my posts of late, but I AM ON 6MP and I have to have iron infusion bi-weekly and I usually need blood every 10-12 weeks. I know I have a...
I should do that too CrohnieToo. This bleeding is really depressing. I know how ya feel Stevemc. It is a struggle to stay at the top of the depression hole. Managing CD is the way to go, but when you...
I hope you have read my previous rants, however here is a recap: have had a duodenal bleeding ulcer caused by Crohn's since 1997, Yes that is right, no typo there. to the point now of having blood...
I thought that TB was a lung disease?? If it is, no worries. But whatever your questions are, just ask, it does wonders for the brain ;)...
Found out that my hemo from yesterday is 87, so they cross matched for a transfusion AGAIN! I can not wait till my surgeon gets back, however, I don't know if his staff will let me through. I am so...
I have actually sent in all my records to the Mayo Clinic and they basically turned me down. Very depressing. Here I am willing to pay for treatment and I was told I should stay here. I heard they...
Myrne - thanks for the kind words, I am on Entocort and Humira, and I have T3's for pain. I am gluten free, of course I cheat sometimes, LOL. Randy - Have thought about that a lot, however it is my...
My bleeding duodenal ulcer from Crohn's is really bugging me this last week or so. Everytime I eat, I get upper left quadrant pain. My surgeon is away, could be a year before I get my scope. Why is...
It seems that you get good care where you are randy, hope they are able to fix you up....
Randy, so sorry to hear this recent news, however, I think you know that I have been dealing with a bleeding ulceration in my duodenum for a very long time. I am getting so frustrated, please keep in...
Not yet??...
Yup, I have been bleeding for a few years now. Blood transfusion every 6 - 7 weeks. My bleed is in the duodenum, not a good place for surgery. NOT FUN!!! I am having iron infusion every 2 weeks,...
This may not be good advise, but after she falls asleep, if you still want to, call 911. Have an ambulance come. When they get there and she wakes up and is mad at you, tell a small white lie " Mom,...
lets hope so....
well to be quite honest I can kinda relate but not to your extent. I have bleeding crohns ulcers in my duodenum, have exhausted all drugs, been deemed a medical failure. i am not drinking entocort...
Get her into the ER pronto!! Sorry same advice. Good for you for seeking help. Your next step must be to be honest with her. Tell her you love her to much to watch her not accept medical care. Please...
Aw it is not on there, mine is on my profile, if you are interested send me an email and I will add your address....
Yay Andi, I am so happy you are recovering and I found that site called caringbridge.org, it is where you tell your story and you invite friends and family to check in on it, and you can update...
I know what you mean. But in theory it should work????? Worth a try, 6 more to go, UGH. And what if it does work, how great will that be. I am gaining weight, up to 121 now. It is amazing how much...
I plug my nose because I am very sensitive, I gag really easy. But I add a splash of welchs grape juice. It reminds me of the bowel prep "golytly" (sp?), it is not that bad, I have no side effect at...
Yes, you read that correctly. I am on day 7 of drinking entocort enemas. Since my bleeding ulcer is in the duodenum ( right after the stomach ), I was advised to try this. I am taking another week of...
Wow, going home. It will be nice to be in your own bed and surroundings. Wishing you well....
You DO sound so much better. So glad to hear you are on the mend. You talk about going home already??? I am usually in for at least 7 days with no complications. Keep resting and having positive...
Oh my goodness. You are in my thoughts. Keep the faith....
So good to hear from you, wishing you an amazing recovery....
Ok, anyone heard of this??? This is what we are going to try for the bleeding ulceration in my duodenum. It makes sense since it is used to treat ulcerations in the colon. I am hoping someone on here...
(((((hugs))))) I am thinking of you....
I think I can relate to your mental status. I won't bore you with all my details, but I am a medical failure, have dr's that don't want to do anything. The area that I have trouble with is not a good...
I have no suggestions. But I know EXACTLY how you feel in regards to not responding to treatments. I have upper GI issues ( duodenal bleeding ulcer caused by Crohn's) and I live in Winnipeg,...
I will ask about that. thanks. Hey Randy, did you have bleeding this bad? I have no evidence of blood (that I see anyway) and yet my levels are so low. You have been through so much and you are still...
Um wow! that is a lot to take in. Thank you for taking the time to put all that down for me. However, I read conflicting information all the time. I will look further into this as really I have...