SSDI---the senators office, and a couple of gastro questions

[Guest Julia59]

First I will start with the embarrassing questions.

I have EDS, and i'm told by my PCP that I should have a colonoscopy. I tried to make up some excuses as to why I may not need it, -------she wasn't buying it. She is really a good Doctor. Anyway, i'm not sure what type of EDS I have, just that three doctors say I have it. I have a diverticulitis in my small intestine, and i've had it since I was a young adult---maybe teenager.

I was first diagnosed with IBS, and then more testing, and a Dr. Slee found it. Then I was later told it was the size of a quarter, which is about the diameter of my small intestine. It's near the jejunum, ileum area. I have read medical journals that this can sometimes co-exist with EDS, but I can't remember which type.

My concern is having intestinal injury with the scope. I will bring it up to the gastro Doc, but he probably doesn't know a thing about EDS. Nina, did you read this in the medical articles I sent to you, or am I losing my mind?

Also, i'm blocked up more then ever, and i'm wondering how long any of you have gone before passing something. It's been 8 days for me. I'm bloated, but not miserable. I'm just missing the sensation that I have to go----I can't feel it. Do any of you get this, where you just don't have an urge to go----like i'm dead down there. Sorry---soooo---embarrassing....but I have to ask.

Regarding SSDI. Have any of you ever dealt with your congresswoman/man or state senators? I have sent information to both, and both replied. My congresswoman can flag my case, but the senators can actually investigate it. When I was denied, part of the denial was based on a false report by the SSDI Doctor appointed to my case. In fact most of the decision was based on his lies.

I read the reports over and over, and compared it to my mecial records. The more I did this, the more disgusted I got. The senators office told me to fax the SSDI Docs report, the second denial letter, and the most recent medical evidence showing that the SSDI Doctor is putting false information in his medical evaluation report. I was told there would be an investigation in the main office in Maryland.

I did this in July of last year. I followed up in the fall, and have never had any of my calls returned from the senators case work office. Finally while looking into some of my medical records, I decided to get brave and go into my little black briefcase and go over some of the SSDI stuff. I called the senators office---I got lucky and caught the case work guy. He had a pocket full of excuses as to why he didn't return my calls. I remained patient, and asked him to look into the status of the investigation. He seemed lost, and told me he will check into it and call me back.

Well, I had to fax everything to him again! Is this typical? My attorney seems to think contacting the senators office is useless. My local office said it will take two more years for the hearing. When I talked to the case work guy, he said that wasn't true, and that they hired more judges.

I just think SSDI drag their feet because they want us to give up--------well now they are playing with people's livelihood. The delays are getting much worse.

Well---that's it. Thanks for reading.

Julie :0)

[janineerrn]

Hi Julie,

Been there with the bowel thing. You really need go sit on the pot for about a half hour everyday, several times a day at the same times (bowel training) ( I bring a pillow) I either cant go or have major diarrhea, woo hoo.

I ve been scoped both ends, joy, several times. I insist they put me out. If they are looking to see if your diverticuli have gotten worse, a CT with contrast or low GI series can show that and it less invasive. But if you have to drink the contrast or barium for the xrays your bowel problems with increase. (I pooped white bricks and thought I was going to die on the pot)

Dont be embarrassed, everyone poops, some more frequently than others....

Janine

[MightyMouse]

Julie, I doubt that the scope will harm you in any way. Yes, ruptures a big concern w/ the vascular type of eds, but not the other types. If you've had no problems with severe bruising, aortic aneurysm, then you probably don't have the vascular type.

I also don't feel I have to "go" even after days on end w/o a bm. I've been somewhat more regular on zelnorm and miralax. Not daily, more like every 3 or 4... better than 7 to 10! Only bad thing: when I get the urge to go, I only have minutes to find a bathroom--or i'll need a change of clothes.

I have upper endoscopies at least 1x a year, and colonoscopy every 1 to 2. I don't worry about them anymore--only the prep is tough on me.

Nina

[Guest Julia59]

Thanks Nina & Janine,

I'm going to have the colonoscopy----I can't avoid it---I don't think.........unless they have some other test that can do as well, but even the most thin cut MRI may not catch pre-cancerous polyps.

I'm wondering if that higher white blood count (16,000) may have been related to that bad spell I had after eating that corn. Corn is a big no no for me. I had a spell back in 1986 after eating two ears of corn-----high fever and everything. It's a slippery vegetable----slipping in to diverticuli pockets easily. If I eat nuts it's bad also, but nothing like when I eat corn. I never buy it, but sometimes it's in vegetable soups. In December I ate some vegetable soup that had a lot of corn, and it was hard to avoid it. I should have gotten something differt to eat, but I was so hungry and potsy---I needed to eat. I should have dealt with the POTSY feeling. The WBC was not that high, but high enough to show I had a problem.

Dr. Grubb told me to go to ER because of the WBC---and I had abdominal pain---middle right side.

The ER Doc said spleen was irritated from gagging---and straining---and it cause the elevated WBC.

basically blew the whole thing off---but I didn't really care---I just wanted out of the ER.

It's not very good timing---as my symptoms are getting so much worse. BP is so low, and fatigue is relly bad----it's very difficult to just go out for a short period. I can't handle going into stores for more the a few minutes if that. I'm just so weak and fluish. My new pcp is doing more blood work. I have this odd circular rash on my knee caps---it's raised itchy-----shaped kind of like some kind of spider bites. It's been there for weeks. I forgot to tell my new PCP about it. It dries up, and keeps coming back.

It's only one or two spots on both knee caps----very weird. My cold doesn't want to go away, and I feel a lot of chest congestion. However, it seems to be loosening up a bit, and the cough seems more productive. I heard there is a bad virus going around simular to what I have. I didn't tell the PCP because I thought it was going away, but it seemed to get worse a couple days after my appointment. Now I feel so weak, I don't want to drive.

I'm going to try to get out of the house---it's so nice out today. My husband will be with me---so if I feel bad---i'll just go home, but I have to try----I need fresh air. The rest of the week is goin to get cold again.

What a stupid mess....................... Can you tell i'm not quite with it---i'm floating off subject--rambling---ect.----------sorry girls.............

Darn-------I need a hug-----------

Julie :0)

[dizzygirl]

BIG HUGS for you dear!!

feel better soon!!

love and hugs

linda

[Guest Belinda]

HUGS..Hugs..and more hugs!!

Belinda

[MightyMouse]

Hi Julie, try to hang in there. I think you will at least feel like you've crossed off an item from the list of things to rule out by having a colonoscopy. And, if you have polyps or if they find something that needs treatment, you can get that taken care of. For me, b/c of my suspected ceoliac/sprue, the colonoscopy is mandatory. Celiac which is untreated (failure to stick with the gluten free diet long term) has a very very very (very...) high rate of colon cancer. For me, so far so good.

Seriously, the absolute worst part is drinking all that gross NuLitely (formerly called GoLitely (ha!!)). Yes, you'll go... and go... and go... and just when you thought you were finished, you'll go some more Oy. I always make sure to have off from work for a day or two afterward b/c the combo of no solid food and all those laxatives really make me symptomatic for a few days. Also, expect to be constipated for the few days that follow because your body will need time to recover from being emptied so thoroughly.

Hope you feel better. BTW, I have rashes and weird spots show up all the time. Sometimes it looks like ringworm, which given my profession of working with children, isn't out of the realm of possiblity. However, antifungals, antibiotics, etc., don't usually make them go away. Sometimes I think it may just be my excema flaring up... which, is the reason I keep getting ear infections; I have excema inside my ears and the skin breaks down and leaves me open to infection.

Okay, now I'M the one rambling... sorry! Nina

[Guest Julia59]

Thanks for the information Nina---and for the support and hugs---to all of you--------

Nina----that is exactly how my little rash is---just these spots that look like ring worm---but it keeps coming back---and won't go away. And such an odd spot---my knee caps. Thanks----now I don't feel so freaky about it---just another weird thing. At first I wondered about some kind of fungus, It got under my right thumb nail when it was hit hard and water got under it.

Do you all notice your heart being so touchy---like anything can cause it to go haywire? If this wasn't the case---I wouldn't be so afraid of drugs that could actually be of help to me----or afraid of needed tests. It's funny---they can stick a thousand needles in me---and i'm fine.

I just wish I could find a good doctor that knew a lot about chemical exposure---because I was exposed to a lot of fumes---and I think that was a big trigger in a lot of this. Now i'm sensitive to a lot of chemical fumes----and drugs. One day at the mall---about two months ago we went just to one wing of the mall to go to one of the stores because I can't handle walking through the whole mall. We went by the nail salon-------my body went haywire, and I stuck my face in my turtleneck shirt, and we had to get out of there.

What a time i'm having----------- I'd be happy to be at my old baseline---at least I could venture out and last a little longer...................................

Julie :0)

[Sunfish]

hi julie -

i definitely hear ya about how you would be happy to be back at an "old baseline"...i'm right with ya there. just wanted to chime in & say that i'm super glad you've decided to go ahead with the colonoscopy. i've had 2 & while i won't say they were fun, as others have said the prep is the worst part. the first time i had mine i was wiped before (b/c of the prep) & after but handled it okay. i was by no means productive in the least but i even made it to work the next day....at least in theory

the second time isn't anything fair to compare to as i was already hospitalized, bleeding (in my colon from ulcerative colitis), had been NPO for several days, etc. WAY to many variables to fairly say anything was b/c of the colonoscopy. thus i was pretty ill after the testing and was in the hospital for several days more but honestly i was obviously pretty ill before too so the test itself can't be blamed. so....NO reason for you to be concerned to that degree.

i would plan to take it more easy that the norm for the few days before & after just to be on the safe side but kudos for going through with it - i know it's not easy for you.

melissa

[Guest Julia59]

Thanks so much everyone!

I won't see the gastro Doc until May 12th, Katharine Hepburn's birthday (for you old movie fans out there)----so I have a couple of months the strengthen myself up a bit. She was a strong person---so it couldn't have be a better day----plus I have my courage stone that my little nephew David gave me.....

I sure am a mess now. My upper back hurts so bad--I can't believe it. I think it's from the coughing---on the already existing spinal issues I have.

Uggggggggg----enough of my whining-------------------- I sure have done enough of that today....

Julie :0)