Frustrating Couple of Weeks
 

My stim has worked so well since my implant August 2011. Over the last few weeks my abdominal pain has been rearing it's ugly head, increasing daily. I'm back to taking pain meds daily where I was down to 1-2 week. Today I had to call my husband to drive me to the ER. Pain was at a 10+. They gave me meds to help with the pain and sent me home 4 hours later. I don't know what's going on and am so tired and hurting. I see my pain Dr first thing Fri. AM. Hope he can help.

Besides all this my family has our BIG Super Bowl Party Sunday. So much to do and I don't know how much I'll be able to help. We have over 100 people at our house, two projector TV's ( one outside and one inside) plus 3 other TV's. Thank goodness the weather should be nice, in the mid 70's. I am blessed with a loving husband, two sons and friends who are there with help and prayer.

I hope my Dr can help tomorrow.

God Bless you all in the day ahead. Thanks to everyone for your good thoughts and prayers. I am so blessed to have found this group.

Sandy K

Hi Sandy Kay,

If youre not well enough to run the superbowl bits and pieces have you sisters or good friends you can nominate to do your job for you, i'm sure they'll understand when you remind them how much pain you're in, the unit might only need a tweek and you'll be back to yourself again. You can still be in the house but they can do things for you, you can go and have a rest when the game is on and your not needed.

Sounds like lots of fun, it will be on late here in Ireland but I bet my husband will have it on.

Take care and i hope things sort themselves out for you.

Sinéad

Hi Sandy
 

Take it easy at the party! lay low and let others do all the work. when you are in pain like that it is best not to make it worse by overdoing anything. You are lucky to have such good friends, husband and relatives around you to help. Let them do it all, and you just sit back, hopefully with some help from your pain specialist, and have a good day. I wish you all the best, and I too, will be watching that game with the rest of America. Take care, ginnie

Hi Sandy K :)

Im sorry to read that you are having a bad time of it lately. Isnt it always the same,......you get so far and wallop its back again:eek:But you know it could just be that you 'overdid' it at some stage. I know Im guilty of that a lot and Im my own worst enemy, if the truth be known. If I'm feeling good I take life by both hands and dont let go and pay the price for it later on:rolleyes:

I do hope your Dr will have some answers for you when you meet with him. Im sure you are probably meeting with him now as I type, so hopefully you will come back to us with some good news for your recovery!

Take care and enjoy the Superbowl as much as you can

Jackie :)

That's just typical .. and just when you had something to look forward to .. the superbowl party .. isn't it just how it happens sometimes?

Take it easy and I agree with ginnie .. get people to help you and you supervise :) xx

Unanimous!!
 

USE HELPERS, ELVES [THEY ARE OFF FOR THE SEASON, YOU KNOW] ANYONE YOU CAN DRAFT SO YOU MAY BE AS COMFORTABLE AS POSSIBLE!! Did I get that across as subtly as intended?

Be GOOD to Yellow! And if you would like a helping of Snow to take off some of that heat, we are in the middle of a blizzard, so could arrange shipment.....might have to use a C5 Galaxy though to get enough to you due to the melt on the couple of hour flight.....

:)Mark56:hug:

Gee whiz, Sandy, I'm sorry you ended up in ER because of this :(
but like everyone is saying, it's great that you've got all this support from family and friends.
I know how hard it is not being able to do much for a big party, especially in your own home. People will just have to understand, and have your best 'helpers' ready at hand.
Do your best to be able to have fun, k?

Please let us know how it went at your Dr visit today.
I sure hope he can do something about this.

Rae
:hug:

I met with my pain management doctor this morning andHe admitted he doesn't have lots of experience with abdominal pain. Which I knew going in.. I am meeting with my Boston sci rep Tues am to see if there's any way he can help. If my pain continues my pain MD wants me to return to my GI specialist at UCLA. I don't want to get back on the wheel of narcotics again. I was down to 1 or 2 meds a week now it's 2 or 3 a day again. I feel like the stim isn't touching it. This is the cycle my pain has been for years. Flare ups then calm for a short time. I thought the stim was handling the flare ups until yesterday. Maybe I'm over reacting with the Superbowl party.
I will be following your suggestions to sit back and let my family and friends take control. They already have decided who is doing what AND guess what? My name is not on the list this year. I guess I'll get to see the game and commercials for once instead of taking care of our guests.
This afternoon my pain level is a 7. Big difference from the 10+ yesterday.

Mark, I might take you up on the snow to cool things down. The Santa Ana winds are blowing and it's dry and hot. How will we keep the beer and wine cold? :-)

I need to remind myself to take it easy. Thanks for reminding me.

Sandy K

I met with my pain management doctor this morning andHe admitted he doesn't have lots of experience with abdominal pain. Which I knew going in.. I am meeting with my Boston sci rep Tues am to see if there's any way he can help. If my pain continues my pain MD wants me to return to my GI specialist at UCLA. I don't want to get back on the wheel of narcotics again. I was down to 1 or 2 meds a week now it's 2 or 3 a day again. I feel like the stim isn't touching it. This is the cycle my pain has been for years. Flare ups then calm for a short time. I thought the stim was handling the flare ups until yesterday. Maybe I'm over reacting with the Superbowl party.
I will be following your suggestions to sit back and let my family and friends take control. They already have decided who is doing what AND guess what? My name is not on the list this year. I guess I'll get to see the game and commercials for once instead of taking care of our guests.
This afternoon my pain level is a 7. Big difference from the 10+ yesterday.

Mark, I might take you up on the snow to cool things down. The Santa Ana winds are blowing and it's dry and hot. How will we keep the beer and wine cold? :-)

I need to remind myself to take it easy. Thanks for reminding me.

Sandy K

In Stereo No less
 

Well Sandy, it is good to know you have helpers lined out. Maybe you will see some way funny commercial loony tunes and gain a smile......

It is kind of funny, but a commercial was taped when I was quite a bit younger near where I grew up, and the director wanted SNOW on a spring day..... SO, they hired my father's highway paving company to truck several tons of snow down from the high country to create the scene. Imagine this, a tractor and a lowboy trailer with a Cat loader on the trailer. 20 dump trucks heading up to the snowfields, loading the snow taking it down where things had long since melted, and reversing every thing, including the need to somehow fluff the snow by having the loader to "toss" the snow from the bucket. Cracks me up... and come to think of it, I think it was some beer commercial to boot. Yep. It has been done to satisfy either the east coast or the west coast boys......

A good load of snow from the high Sierras might just keep your beer cool for 30 minutes or so....... :winky:

I like the high country... quite a bit.
Mark56:D

Hi Mark
 

If I could send you some heat from Fla. I would send up the sunhine to you right now.
I remember those blizzards, don't miss them at all. I wish I could have everyone from Neruo talk come down here for the winter to vacation. I would have everybody over for a big super bowl party with sunshine in plenty. will be 80 here on sunday. Have a great weekend, and I do love your posts. ginnie

Hi Sandy K
 

Hope you get some great relief on Tuesday. I'm meeting my rep on Monday. Things have changed, but I'm only 2 months in. sending cold weather and fog from the central valley to you. :)

:) California, land of many ecosystems
 

Thinking of a lyric from God Bless America [Goodness, I don't hear that one sung anymore]...... from the mountains, to the prairies [the central valley is analogous albeit influenced by the coastal atmospheric influx in part], to the oceans white with foam...... your state has all of these...... I think I would feel more at home up Tahoe or Redding way.....

A mountain person at heart,
Yeah,
Me and my skis, backpacks, rifle, boots...... oh wait, scratch that,
Me and my stim,
takin in the view,
Mark56:hug:

I could be totally wrong here...
 

I, too, have had many problems with GI area. I'm probably totally off track here but thought it worthwhile throwing it out, just in case it's helpful.

I've been on a lot of antibiotics over the years and have had GI flare ups probably 3 - 4 times a year and was always just told I had a stomach bug. However, I felt it was something more than that because it just lasted too long. Long story short, turns out I was finally diagnosed with Small Intestinal Bacterial Overgrowth (SIBO), which causes A LOT of abdominal pain, distension, nausea, hard to eat etc. For me Flagyl is helping, but have been told that given my individual circumstances that it will likely be a recurring problem for me. With SIBO it can be a problem because you get better for a while, and then it comes back,which can be baffling to doctors as they can't pinpoint anything physically wrong with you.

I think seeing your GI specialist is a great idea. Just wanted to add my two cents just in case you may be dealing with the same problem. Hope you get some answers!! :hug::hug:

Thanks Fiona
I'll make sure to ask my Dr about SIBO. How did they finally diagnose the problem?
Sandy

Sandy,

There was no test, but was related to my symptoms and how it would keep coming back. Actually, I don't think a test will show it unless there's a way to test one's guts for overgrowth of bad bacteria (may be out there, not sure).

My dr. went by my symptoms and said if Flagyl helped it then it's a sign it was the right diagnosis. If it didn't help it, then he'd have to keep on looking for an answer. The thing for me was the abdominal pain seemed to move around..would be in upper belly at one point and lower abdomen the next day, so he knew it wasn't anything obviously wrong with a certain organ.

He told me the pain I felt was actually gas that was being off-gassed by the bad bacteria, and that it wouldn't leave my system on its own (I couldn't "toot" it out:winky:) but that the flagyl would help kill off the bacteria that's causing the gas and the subsequent pain. For me I know when the flagyl is working because the gas pains begin to go away and I don't have belly pain when I eat/or shortly thereafter.

There is a medicine they can give that's a "big gun" that wipes out all the bacteria in your guts. It's called Xifaxan but unfortunately I can't tolerate it. You take it and then when you're done you have to replenish the good bacteria in your system with probiotics. This is one antibiotic that you cannot take probiotics with it at the same time as they want the whole gut system's bacteria (good and bad) killed off.

So I tried the flagyl and it's working. I'm usually on a high dose for about 10 days and unfortunately given my own particular circumstances, I have it come back several times a year. Most people who have this are probably only treated once and it doesn't return. Some others, like me, are blessed (being Ms. Sarcastic Pants here) with having to live with it.

Diet modifications help, esp. adding a high quality probiotic daily, as well as eating yogurt...anything to help keep the good bacteria in our guts up so they outnumber the bad ones.

Sorry to be so long winded here...:D

Hi fionab
 

I was reading your post. Have you ever been to an upper GI specialist or had an endoscopy performed.? I am just asking, as that test really does get to the source of any stomach problems. ginnie

Ginnie
Thanks for all the info. I think your points ruled it out as a possibility.
I've had upper and lower GI tests and many endoscopy procedures to treat Sphincter of Odi Disfunction. My pain is always in the same spot, sharp and stabbing. Seeing the pain management Dr and Bos. Sci. rep this am. Wish I could get some sleep. Stim not helping much tonight. Hopefully I'll get some relief.

Sorry to be so down. The stim was doing so well since implant in Aug. Wish I had Eva's positive attitude and strength right now. And she's going through so much more than I am.

Sandy

Sandy

Hi sandy kay
 

I really hope you get that relief. I go to my upper GI doc. this a.m. I know all of us get down now and then and I sure am no different. Thats why I hang out here, I get alot of support to keep going forward. I am sending good thoughts your way. ginnie

Ginnie: Yep, work with a GI specialist so already know I have hiatal hernia, GERD and Barrett's. I didn't want to get into all the details with Sandy about why I personally continue to have SIBO and probably will have to live with it (until God heals me, of course!). It has to do with my having a Primary Immune Deficiency, which is a rare disease, so felt it had no bearing on her situation. Thanks for the thought, tho :D:D

Hi fionab
 

Very very strange....I have all you do except the hernia. I too am loaded with an auto immune deficiency. Was diagnosed in 79 at Mayo clinic. These gastro problems are related to that as yours is. Mine started with a virus, that landed me in the hospital, followed by my long waist length hair falling out in clumps. I had alopecia universalis, and was in a trail for 10 years. I have four related immune problems. Do you also have trouble staying healthy like from colds, and flu? I did a number of years in research on this, and thats how I found out all these different problems I have are related. How old were you at onset? Were you told anything about possible ground water contaminations? I will be having the endoscopy every six months for the Barretts, how often are you being required to take it? I really do want to hear from you as I have not met many people in my life who have these multipal immune related issues. Good to meet you wish it wasn't under these circumstances. I hope to hear from you. ginnie

Forgot: FBIO
 

Don't have that issue eithor, but I had been checked for it. ginnie

OK even tho Off Topic
 

I cannot go without expressing my concern for both of you, Ginnie and Fiona, for these many issues which affect your G.I. I have friends who have been dealing with cancer of the G.I. and not the immune deficiency issues you live with. All of these matters are so hard to endure, and I pray for each of you God's overflowing grace and that, as Fiona suggested, you each know healing. After all, we have been allowed to know, ask and we shall receive. Thus I ask on your behalf.

In God's Love,
Praying,
Mark56:grouphug:

Ginnie: Turns out I was born with a genetic problem with my immune system and was sick for many, many years before finally being diagnosed in my late 40's (I'm 53 now). I have a Primary Immune Deficiency called "CVID", which means my body cannot fight off certain infections, esp. strep, pneumonia and staph. I am prone to multiple infections and for some reason this year has been the year of GI infections. I'm hoping and praying it's not a sign my immune system is getting worse! My immune system problem was discovered after my ENT getting frustrated after the many sinus surgeries I've had, which culminated in a bilateral frontal sinus obliteration as they were afraid the infection in my frontal sinuses was going to get into my brain.

My mother died of lupus complications and my sister died of chronic pancreatitis. Looking back I strongly suspect autoimmune stuff in most of the women in my family tree, but back in those days they they didn't go to doctors like we do now and so nobody knows exactly "what" their diseases or health problems actually were.

I have my barrett's checked every 3 yrs. as my GI says it hasn't progressed beyond the previous amount of erosion and he says likelihood of going cancerous is little to none.

If you want to know more about Primary Immune Deficiency, I talk about it at length on my blog as it's just too much to go into here. My blog is:http://fionab-lessonslearnedfromlife.blogspot.com/

Go to the Pages section on the right and click on "Living with Primary Immune Deficiency".

Hope this answers the questions you had.:hug:

Re: CVID/ hi fionab
 

Hi fionab. I will read your blog. I am interested in this. They didn't say what it was exactly for me. They said a T @ B lymphosyte imbalance. My immune system attacts myself as a foreign object. My hair went first. I also have trouble fighting off infections as you do. Pnemonia, ear infections etc. My immune system functions, but is mixed up on where to fight. So this is different fron CVID. My DDD, DJD, joint issues and the osteo are all related to this origional problem. I had mono in fourth grade and was sickly as a child.
I am glad your barretts is under control. That is a big relief I know. I am hoping for the same results. So far my Gerds is not under control. The GI is going to be much more agressive, as it is still eroding my stomach lining and my esophagus and I have alot of trouble swallowing. My thoat being dilated helped. I still wake with gastric pain so I got a new med. yesterday. Do you think this GI problem you have is related to your CVID? I am also starting to question this in my mind for myself. I have to do the upper GI every six months for awhile. I am wondering for sure if it is related to the problems with my immune system. What test diaganosed your CVID,? was there one particular one?. I had a whole battery of tests at Mayo. That T @ B stuff was all they really told me about. I entered a trial for 10 years, with a topicial immunosupressant called DNCB, a topical chemotherapy, which "socks" your immune system to behave itself. Very unpleasant but I stayed healthy while I was in the study, and my hair grew back. When I quit the program, all the problems came back. I couldn't tolerate the side effects from the DNCB. Also there were only a few places in the country doing this study and I wanted to move to florida. Had to care for my mom. So now I am being battered so to speak. I am questioning now just what I should do to stop the advancement of my conditions, or if there is anything I can do at all?. I am sorry you have had a fight with your immune system too. None of this is very much fun. Try to stay healthy and I will too. Now I will go read your blog. Thanks for writing to me, you are the first I ever met, who has had the immune problems. I appreciate your responce. ginnie

Thanks Mark
 

Thank you Mark for your prayers. I know this other dear Christian lady appreciates it as much as I do. The longer we are on this site it seems the better we get to understand what issues we all carry. I learned of the severity of what you, eva,fionne, carry around, with few other dear souls. The issues in our lives are indeed pretty rough. After this last post of mine telling about the immune stuff, now you understand where I am getting all my little problems from...humph.....That is why I stay here Mark, and tell the truth that I get frightened. I never know next what my body is going to do to me. It is weird to know that your main fighting mechanism is an odd ball. Fionne lacks immunity, it seems I have mine, but it is mis-directed. It forgets to fight the stuff it should, and instead it attacks me. I am going to learn about this other immune problem that this dear lady talked about. I have been trying very hard, to research what people are telling me about their conditions, so I can better understand their needs, and their hearts. Prayer is the best thing I have right now, with the good people on this site who pray too. Have a good day Mark. I hope your pain is less today. I have to check up on Eva, and see how her recovery is coming along. :grouphug: ginnie

And Ever Do I Pray
 

For the two of you, Fiona and Ginnie, known to have immune system issues, such a lot to bear in addition to the other issues you carry. I know God lifts you up and only a single set of footprints may be seen in the sand as He carries you.

Prayin and Prayin,
Mark56:hug::hug:

Follow Up with Bos Sci Rep Tues.
 

Tuesday I met with my rep Eric who spent almost an hour going over each setting trying to make sure my stomach area is covered. My pain has diminished quite a bit but still am back on multiple meds a day. Not where I want or hoped to be. It is so frustrating to be told they really don't know what causes the flair ups. They run the labs, cat scans and ercps with no real answers. The diagnosis is Sphincter of Oddi Dysfunction. I know this is so different from many of your issues but pain is pain. We are each given a path to walk.
I pray that each of you will have a peaceful night and a brighter tomorrow.

Sandy K:Ponder:

Mark
Forgot to mention I asked how often my rep lets patient take the wheel in programing. He said he usually lets the Dr make the suggestion as to who takes the lead but it's only a few times a year. He said he didn't have the control with him but would have let me if I wanted to. Maybe next time if I need it. But, hopefully this is the last. Too bad most of us were never given the option. My programing was done the day of implant. Don't know how alert and functioning I was immediately after surgery.

Sandy K
:grouphug:

Understood Sandy
 

Well, with your programs set day after surgery, you are spot on, as you would not have had an easy time discerning surgery pain from nerve pain. We who go for implant and wait two weeks for the surgical pain to abate before programming stand a better chance of knowing what the situation is with our pain.

Even so, it is good to know the answer to the question you asked AND to realize you are obtaining relief..... maybe if your pain has diminished quite a bit, you may ultimately find better relief over time and with your doctor make an effort at reducing dependence on pain meds.

Prayin for ya,
Mark56:hug: