Eventful clinic visit - any experience endoscopy or statins

[AmandaClare]

To the tx clinic this morning. My partner came as we had quite a list of issues to discuss and wanted some action. The consultant was very helpful.

He thinks I might have a stomach ulcer (very common with the prednisolone) and is sending me for an endoscopy. In the meantime I’ve started stronger anti-acid treatment. An ulcer could quite neatly explain my anaemia (if it’s bleeding), and therefore the tiredness. He was a bit shocked at the level of indigestion I accept as normal and it may be that I’ve had an ulcer for years and am just used to it.

Anyone had an endoscopy? It sounds horrendous to me, I know they sedate you but I'd need a horse tranquiliser before anyone could put a tube down my throat.

I’ve been getting pains in my feet too and that might be vitamin D deficiency, I’m on supplements but have had trouble getting hold of it so was without for a few weeks. He’s going to check some blood markers of bone turnover, but I think he’s hopeful the pains will improve with the Vit D.

Finally I haven’t managed to get my cholesterol down so have to start statins. It’s not appallingly high but they like to keep it below 4 in tx patients.I know that being at home (I have a young son) leads to many trips to the fridge, plus I meet other mums in coffee shops and get tempted by the cakes. I'm a bit worried about taking statins as you hear horror stories. I also know they can extend life... Any experiences/warnings?

Many thanks!

[AmandaClare]

Thanks Keith - some interesting ideas there. I'll research the coQ10 and maybe give the Benecol a go.

My vit D supplements don't contain Calcium though, they are pure colecalciferol, ie vitamin D3. Though today they came with a very detailed leaflet about the risk of hypercalcaemia when you take the drug.

BW
Amanda

[webster]

My husband had tx on 14th Aug. after about 10 days he became very poorly had pains in his back and stomach, the doc. ordered many tests one of them being an endoscopy. Hubby just had the spray at the back of the throat. it was unpleasent but not as bad as he thought it was going to be. They found 3 small ulcers. They did a biopsy. Today we received a letter about having it done again on 7th Oct. They say the doc wanted it doing again a month later, Dont know why!!!!!! But one thing you mentioned was that you are anemic so is my husband, his count was 7.8 at clinc yestersday, I wonder if they are bleeding. Hmm will have to ask about that.

Hubby as also been on statins for years and has never had any problems. Yet they did bother my stomach, I came off them and tried to stick to a diet. (High Cholesterol)

ps. Hubby had shingles.

[AmandaClare]

Thanks for your reply Webster. I saw your earlier posts about your poor husband's experience with shingles straight after tx, I do hope he's fully recovered.

Oh heck, I didn't know what you meant by a spray at the back of the throat so googled it. I came across forums where many people said take the numbing spray as the sedation often doesn't work. So you feel the whole thing and once they start they hold you down and won't stop.

Not sure i can do this! Like most renal patients I'm blase about things that scare many civilians, but I have an absolute phobia about tubes down my throat. It stems from having naso-gastric tubes when I was a teenager and v. ill.

[violet]

Hi

No experience of endoscopy but have recently started on Statins.

I'm 35 years old and had cholesterol of 4.9. Been on Statins for 12 days and its now 3.4.
Don't appear to have had any side effects although its early days, also haven't heard of the horror stories, probably don't want to!!

I used to get bad indigestion but they doubled the Omeprazole to 40mg and that sorted it. Good luck with the endoscopy. x

[AmandaClare]

Thanks Violet, good to know the statins work really quickly.

A bit of me thinks 'sod the diet, just let the miracle drugs do the hard work'. Poor attitude or what?!

[MandyV]

I've not had an endoscopy myself but my brother has had a few - the first couple didn't work as, despite the sedation, he was too restless for them to get a decent look - he didn't remember a thing. He had another about a year ago and they told him that they had changed protocols and it would work - and it did; including sedation as they did a bit of work whilst they were in. So don't get too concerned, tell them your fears and I am sure they will deal with them accordingly.

[violet]

Thanks Violet, good to know the statins work really quickly.

A bit of me thinks 'sod the diet, just let the miracle drugs do the hard work'. Poor attitude or what?!

I know what your saying, the kids pack up chocolate calls to me most days!!

Having said that I wasn't given a chance to lower the cholesterol myself, so next time I go to clinic I'm going to see if they will take me off the pills and give me the opportunity. With the cocktail of drugs we're given anyway I'm keen to avoid taking more if I can manage it myself.

[Thelma]

I've been on statins for about 6 weeks now and have had no side effects. My cholesterol was 6 but I don't know what it is now. Better, I hope!

I've had lots of scopes including gastroscopy to look for bleeding in my stomach. It wasn't pleasant but it was fine. I didn't have any sedation, just the spray local anaesthetic at the back of the throat. I think I'd ask for sedation though if I had to have another, simply to be more relaxed as it wasn't comfortable and I didn't like not being able to talk.

[bigbuzzard]

I was on statins for over a year. Before I started, my cholesterol had been up towards 6. A few weeks ago it was down to 1.4, which my GP said was almost off the scale low, and is apparently possibly dangerously low; not sure if that's because of needing more, or because it's indicative of other dietary problems. So I've stopped taking them for now. I never noticed any side effects (though all kinds of stuff going on, so hard to say for sure).

I also had an endoscopy, immediately after a colonoscopy - I just had to roll over - though a different probe was used (I did check!). I opted for no sedation, as I wanted to drive home myself immediately afterwards. The colonoscopy was fascinating - and only slightly uncomfortable from time to time. Apparently the guy is very good! I could see the screen the whole time, and the camera's 1.5 metre trip was amazing.

It has to be said that the endoscopy was slightly more unpleasant. The anaesthetic spray tastes HORRIBLE for the few seconds before it kicks in. Then my gag reflex tried to choke it up a couple times - which took a bit of self-control to overcome. Once the tube was down, it was OK - you just had to relax. There's a plastic mouthpiece that you bite on to, which holds your jaws apart and stops you biting the camera. This sounds much worse than it is - it actually gave me something to focus on. While it was there, they did a biopsy on my duodenum, which apparently showed that I had coeliac disease. This later turned out to - probably - not be true, though there's still no concrete answer about what's going on. Anyway, during the endoscopy, I couldn't see the screen, so didn't get that bit of entertainment. on balance, the unpleasant experiences were very short, and once over, were all very fleeting. So if you can get over your phobia, it's worth it in the end - in my case for reassurance that there was nothing serious visible there.

[AmandaClare]

Thanks Thelma and Big Buzzard, you don't make it sound too bad. Really really glad to hear they change the probe between procedures.

Double checking there's nothing serious going on is often a background reason for kidney patients, with our increased cancer risk, and I think that may be one reason why the doc wants me to have the endoscopy rather than just waiting to see if the treatment works. Not that I (or anyone else) is seriously worried or that my symptoms are sinister.

[AmandaClare]

Well, a mere four years after first being referred for endoscopy I finally went through with it today - last time I cancelled the appointment . I was re-referred because I'm sometimes having difficulty swallowing.

It was a mixed bag. I had both sedation and the throat spray but couldn't tolerate the tube. They gave me more and more sedation in stages until I'd reached the max, but I kept fighting and pulling the tube out. However the doc said afterwards that she'd seen enough of my oesophagus and stomach to be reassured all was normal, although they would normally have gone further down. i'm surprised they didn't find an ulcer tbh, given my long-standing dyspepsia and steroid use.

The procedure wasn't traumatic because every time I started gagging I fought them off... If I had to do it again I'd try without sedation because I'd need to make a conscious effort to over-ride my discomfort. The sedation (Fentanyl and Midazolam) just seemed to make me disinhibited.

Now of course I'm woozy and, bizarrely, longing for a drink. Probably some kind of hangover effect.

[Notso]

I had a top and tail endoscopy a few months ago. I was sedated and had no problems at all - went out light and woke up when it was all over. I would award a VC to those folks who do either or both whilst conscious! As for statins, I have been on a low dose for about ten years and have had no effects although my cholesterol seems to go up and down like a yoyo, regardless of what I eat.