Bad luck part II

[Bobbie]

Beth, so sorry you are still unsure as to what to do. Docs. never do agree on anything -- and so it is difficult to make an informed decisions.

I've had resp. infection for 2 wks. - cough, fever, chills, etc. Not pneumonia yet. Haven't been out of the house except to go to the doc. and vote - for all the good that did.

Am glad you got your mother's stuff almost finished. That is a huge accomplishment.

[getwellsoon]

Nausea seems to be such a prevalent symptom post CDiff. I didn't have it as bad when I had full blown CDiff. Anyway, GI ordered bloodwork, to rule anything out but thinks its reflux. GAve me a sheet of what to steer clear of and said lose a little weight. Said to continue Zantac full strength 150mg. twice a day for another month and barring the blood work showing anything he would order me a PPI to knock the nausea out. I hate to take this as they have been linked to CDiff but he didn't seem concerned about it. Liz at least now you can go ahead with the FT and lets hope this time its the charm. I'm praying for you. Sorry you had the nausea also, I just can't stand to wake up gagging. He said since when I go downstairs and take my morning med with water or drink coffee and it mostly goes away he thinks its acid reflux. Another gift from CDiff, I never had any GI problems before. Hang in there Liz. Carol

[beth22]

I don't wake up with the nausea. I get it sometimes after I eat breakfast, but not bad. Before I got diagnosed with c diff, I had terrible nausea. That was my first symptom and before every relapse I would get it very badly and then the M would come and I knew I had relapsed. Now, I 'm not sure what it is from. When they did the upper endoscopy a few months ago, they saw mild gastritits. It could be from acid. It could even be my parathyroid that is causing it and still no one can figure out what to do about that. I will call the doctor tomorrow. Tried today, but they had to locate my tests. Saw the GI and he ordered some more blood tests because the liver enzymes were high on that previous test. I still wonder if taking Pepto Bismol for so long caused it. He said he researched it, but could not find anything as studies have most likely not been done. I hope I don't ever have to take it again after I do the FT. Wouldn't that be a miracle? But, I still think that my parathyroid has something to do with all of this. If it does, I hope the doctors can figure it out and I can get the surgery and get it taken care of. It just never seems to end. I'm going to pray for that miracle. Carol, I keep you and the others in my prayers too. There has to be an answer for us soon!

[getwellsoon]

Liz, That is what my Upper GI showed also, mild redness in stomach and duodenum. Dr. said mild Gastritis which I think is a generic term for your stomach is irritated but we don't know why. Anyway I guess mine is from acid also but I never had any problems pre CDiff so I feel these are all gifts from that. I so wish I could go back in time and feel like I used to but I still thank God I feel as good as I do. You hang in there Liz,I hope it will get so much better for you after the FT. I'm going to pray for this miracle for you also. Carol

[beth22]

Came home from work sick today. No D, but frequency and soreness, gassiness, etc. I don't know what is going on. My internist said there is a virus going around, but I have felt this way before. It's like these attacks I get. My heart beats fast, I feel flushed and then I get the hypermotility, sometimes with D, sometimes not. My endocrinologist called and said the calcium was a little elevated, so I should do the nuclear scan to see if they can see the adenoma on the parathyroid. I said fine. At this point I might as well. Maybe that is part of the problem, although I have thyroiditis too and that is probably more to blame and there is nothing to do about it - it is an autoimmune disorder. I swear, if I hear, "autoimmune" one more time, I will scream!

I really hope that the FT does something. I had the thyroid problem before and would get the rapid heart beat, etc. but it did not affect my GI system that I remember. It was in better shape then before the c diff. It's really discouraging. I just couldn't make it for that last class and faculty meeting this afternoon. Had a trip to the bathroom, wrote a note, and left. I feel so tired....

[gm37]

Liz,
I feel so bad for you. You have so much on your plate. Every time I start feeling sad about retiring, I see one of your posts and the memories of how difficult it was to try to teach and always be prepared for a substitute. I began planning for at least a month in advance.
I hope the FT helps you get some relief. Hang in there.
Anne

[getwellsoon]

Oh Liz, I hate those flushes and fast heart beat. I had that also with all my relapses but it was the worst with the initial infection. I still get it a little if my guts are off. It is the most horrible feeling. I hope today you are feeling a little better and it is just a virus or something. I can't wait until you get the scan behind you and see if you can set up the surgery. Also the FT I have high hopes it will do the trick and make you feel a whole lot better. Prayers always for you. Carol

[beth22]

Thanks, Carol and Anne. I woke up with the fast heartbeat again today, so I took a good dose of my beta blocker. It helps for that. I also woke up with nausea, so maybe it is a virus, as that doesn't usually happen. I hope it isn't my liver enzymes. No one has re-checked those. I was looking online yesterday and found a doctor here in town who does minimally invasive parathyroid surgery. I will call today and see if he participates with my insurance. I'm going in to work. Will see what the day brings. Haven't seen my mom in a couple of days, so have to see her too.

[beth22]

Felt better for a couple of days. Ate a little asparagus and today was not so good. Not much D, but the soreness and cramping and gassiness. I am planning the FT this Thanksgiving weekend. Hope my donor doesn't catch a cold or the intestinal/somach virus that has been going around. It seems my timing is always off and has been since the beginning of this. Anyway, I will post how it goes and if it works. If not successful , I will have no choice but to take Xifaxan and then try again. If the problem is in my small intestine, then the FT probably won't do much Will have to wait and see.

I'm having my nuclear scan on the 26th. Hope the injection doesn't start up any D! I also hope it gives the doctors the info they need so they can figure out if I need surgery or not. Had my liver tests re-done yesterday. Will see what next week brings.

[beth22]

Did a version of FT tonight. Used two emptied Fleet's enema bottles. It didn't go well. I hope I didn't make myself worse. My parathyroid scan that was supposed to take place on Monday got cancelled too. The hospital does thyroid scan as well as parathyroid and I would have to take an iodine pill and I am allergic to iodine. They said I would have to do it the old way and that takes two days, so I will have to see when I can do that. I found a surgeon that does minimally invasive neck surgery, so I will talk to him first and see if he even needs a scan. Had D this morning. Probably should have waited to do the FT, but my donor was here and ready. If I dont' feel worse, I will try it again with an enema bag.

I'm getting very discouraged with all of this. I guess I can always try and take Xifaxan and see if it helps. The problem is it goes right through me first, and that is not good either.

[getwellsoon]

So sorry Liz that it didn't go well. I hope trying it again will do the trick. I am not feeling well either. Waiting for my stool test to come back. Dr put me back on Dificid. He didn't want to wait since I have all the same old symptoms. It just never ends. I went over 6 months this time but it slowly creeps back and takes over. I guess until there is a cure or a vaccine this is the way it will be for us. I am going to talk to my Dr. about the FT, I'm tired of being on meds. Lets hope we both feel better today. I will pray for you that this FT today will be the one that does it. Hang in there. Carol

[beth22]

My husband (cast iron stomach) had an upset stomach too. I know there is a virus going around. Maybe that is part of my problem. I don't know. Well, I will try a FT enema with the bag in the near future. Meanwhile, I don't know what I am going to do.

Sorry you are having problems again too. Maybe the Dificid will get rid of the rest of it now.

[getwellsoon]

Stool test came back neg. for CDiff so Dr. took me off Dificid. Now we have to figure out why my symptoms are getting worse and what is going on. I'm so tired of this, I'm over 6 months out from meds so shouldn't be getting worse, should be healing. They are saying reflux and am taking Zantac but I still have the nausea. Don't feel well, dizzy and fatique, M sometimes etc. etc. etc. I'm glad the CDiff test was negative but just want to feel better. I think trying the FT with the enema bag is a good idea, maybe it will help. I am going to research the FT also, I'm so sick of all this. Hope we both can find some answers, meanwhile I keep you in my prayers Liz. Hang in there. Carol

[beth22]

Carol - Have you had the breath test for SIBO? A lot of us wind up with that. It can give nausea and those types of symptoms too. I have it. I don't know if the FT helps for that, as it is in the small intestine, but I am going to try anyway. My colon is so sore, that I am sure I have other issues as well.

Big surprise - I saw my internist who has always been dead set against the FT, but I told him what I did last night and told him I would try again the right way, with the bag and he is going to try to get me a home health nurse to assist me as I don't know how to do the enema bag. I guess I have no other choice right now unless I go on Xifaxan. I'm supposed to call on Monday to set it up. Will have to talk to my donor too.

[getwellsoon]

Liz, A Home Health Nurse would be great. I hope you can get it all set up. I felt better this morning after going off the Dificid. We'll see how long it lasts this time. Maybe the Xifaxan will do it for you. Why don't you try it now? I took it and it made my stool the best its been in all my CDiff trials and meds. Vanco always gave me loose stool and Dificid also. Anyway, keeping you close in my prayers that you find the answer to all of this. Carol