Finally some vague results from Pillcam

[Niks]

Thought I'd start a new thread!

Jaime finally got a call back today from GI. Pillcam was done at end of November. Since she has had Mucus and blood with no BM. Bloody D - once. Yesterday dark red blood with no BM. She has had weekly citramag to keep her moving! (as requested by hospital).

Ok - so GI said that bowel 'looks' normal. However it is not contracting properly. His advice is if she doesn't have a BM for more than 3 days to do a citramag with senna!

I am pretty much flabagasted by this. If bowel not contracting has the pill even come out? Is there more going on further on in bowel, if camera didn't get very far? Why now is she bleeding?

I am sending an e-mail to ask for her to be referred to London today. No one has even considered her bone density scan, spine score -2.9, she has had no advice at all with this.

She is now getting pins and needles, which happened last time when her B12 was really low, plus her tongue is getting red and soreand sometimes bleeding.

Her GI appointment has just been changed from 4th - 25th March!!!! GRRRR

I am guessing this is IBS diagnosis out of the window, but what are they diagnosing her with and what are they going to do about it!? :ymad:

 

[Catherine]

Niks

I know you already know this.

Bleeding is never caused by IBS.

My research is finding lots of references to ibs, but they are almost all saying bleeding is not symptom.

 

[Catherine]

Did she ever have an x-Ray to confirm that the camera exited the bowel?

 

[Niks]

No Catherine. Whenever I have asked, they say 'it is extremely rare' so not to worry!

I have sent a 2 page e-mail to Oxford. I cannot believe they seriously expect her to wait until 25 March!!!!!

 

[Catherine]

Ok, but finding articles saying 5% chance of getting struck. I don't consider 5% extreme rare.

 

[Niks]

I know. I have pointed this out in e-mail. I have asked for urgent referral to London too. Seriously at wits end!

 

[Catherine]

http://www.mayoclinic.com/health/capsule-endoscopy/MY00139/DSECTION=risks

Occasionally, the capsule can become lodged in the digestive tract. The risk is under 1.5 percent for most people who have capsule endoscopy. The risk may be higher in people diagnosed with Crohn's disease (5 to 13 percent) or people who have an intestinal blockage (up to 25 percent). Your doctor may recommend barium X-ray, CT or MRI tests before capsule endoscopy if you have symptoms of intestinal blockage.

http://www.asge.org/press/press.aspx?id=8140

RISKS:
The primary risk with capsule endoscopy is possible retention of the device in the small bowel. In patients who undergo the test to evaluate for bleeding, the risk is very low, approximately one to two percent. For patients with Crohn’s Disease, the risk may increase to four to five percent. Most cases of retention resolve spontaneously after a short delay in the passage of the capsule, and most patients have no symptoms whatsoever. Occasionally, medications are given to help facilitate passage. In rare instances, there is an abnormality in the small bowel which blocks the passage. In such a case, the capsule can be retrieved during an endoscopic procedure called a double balloon enteroscopy, or in unusual instances, by surgical resection.


http://www.virtualmedicalcentre.com...ule-enteroscopy-capsule-endoscopy-pill-cam/35


What are the risks?
Capsule enteroscopy is a safe procedure and is well tolerated by most patients. Less than 1 in 10 people have difficulty swallowing the capsule, which has a gel coating to help you swallow it.
The main risk is retention of the capsule, which occurs in about 1 in a hundred people. The capsule becomes impeded by a stricture (narrowing) secondary to a tumour, inflammation or scarring from previous surgery. It is not dangerous in the short term, but you may require a surgical intervention to remove it. Obstruction may present as bloating, vomiting or pain. You should consult your doctor promptly if you experience these symptoms. In most cases the capsule will pass naturally from the body without any problems.


http://www.thh.nhs.uk/documents/_Patients/PatientLeaflets/endoscopy/PIID147-Capsule_Endoscopy.pdf

Risks
Capsule endoscopy is a well-tolerated and safe procedure and side effects are rare. To date, more than 400,000 examinations have been performed worldwide. The main risk is capsule retention, which is estimated to occur in less than 0.75% of cases. In the rare instances when this occurs, an endoscopy or an operation may be required to remove the capsule.
Should there be any doubts about using the capsule, a biodegradable Patency Capsule (which dissolves away should it get stuck) may be performed first.

 

[my little penguin]

Wow
DS had a pillcam and he was given days ...
Not weeks ... That we had to see it or doc wanted an xray.

Good luck with the referral

 

[Farmwife]

Wow her other thread got over 60,000. Impressive, sad but impressive.

I'm sorry she still feels helpless. I pray she gets answers soon. HUGS

 

[Jmrogers4]

Hope your email sees results and you get a referral to London and some answers

 

[Sudsy]

That was nice of you to start another thread. When I came on here in November, I did sit and read through the whole original thread. I was truly stunned when I came to the end and found out that she was still undiagnosed. It boggles my mind and I can't imagine how frustrating it is for her and you....

May 2014 finally be the year she returns to good health.

 

[kimmidwife]

Niks,
This is really ridiculous. Is there something like a case manager you can contact? She needs a referral to the big wigs now! She cannot wait until March 25 that is beyond ridiculous!

 

[dannysmom]

Did they say if it was her small or large bowel not contracting properly? Usually the pillcam is used to image the small bowel only ... so maybe it was the small bowel. Ask for the report ... and some key images too if you can. I hope Jaime gets more help in 2014!

 

[xmdmom]

Is it possible for you to get the pill cam report prior to the apt? It's impossible to know what was meant by not contracting properly. In my mind that could mean too fast, too slow, or in an uncoordinated way.

If the intestinal transit is very fast, the photos of the intestine can be blurred and some of the intestine can be missed as the pill cam flies past.

If the intestinal transit is very slow, the pill cam battery can die before it's evaluated all of the intestine.

You certainly want to know if the pill cam took clear photos of the entire small intestine and what specifically was abnormal with the contractions, and is that something that can be seen occasionally in normal people or is it diagnostic of something. An xray to make sure the pill cam came out seems sensible.

Hoping you get some definitive answers and help soon!

 

[DustyKat]

Oh Niks…:ghug:

I so hope you get the referral you need, bless you both for all you have been and are going through. :heart:

Do you have a good rapport with your GP? If so I would pop in and ask that they do the request for an abdo X-Ray. :wink: There is nothing like peace of mind!

Good luck hun, you are in my thoughts!

Dusty. xxx

 

[xX_LittleMissValentine_Xx]

Are you able to contact one of the hospital directors or something?

A couple of years ago I wrote a complaint to my hospital about administration errors - my letters were not getting to me, I was wasting time going to appointments which had been changed etc.

One of the directors actually phoned me up to discuss it. Possibly because I had written a two page long letter detailing a few similar issues.

Obviously, your problems are a lot more serious than mine were. But thats why you need to be heard. I think possibly writing to them - not necessarily as a complaint, but to show what has happened so far and to ask for help??

Is there any other organisation that can help in situations like these?? There must be charities or something that is used to dealing with these sorts of issues?

 

[Niks]

xmdmom - I am pretty sure it is either contracting very slowly or barely at all from what Jaime understands. So what are the chances that the camera did not see the entire small bowel!

Her actual GI was on leave the whole of December, so maybe when he gets back we may hear more. She really does need the report though and I think an x-ray to make sure the camera has gone.

Does it seem acceptable to use Citramag and Senna twice a week to water everything down? I just don't think this can be good for her. Her GP says it takes ruins the lining of your bowel! Great huh!

If she doesn't hear back over the next week then I think that we do need to start writing to a Director. Maybe that is the only way to get people to take her seriously.

Thank you for all your suggestions and kind thoughts.

 

[Niks]

URRRRGGGHHHHH. Just trying to find some information on using regular Citramag. There really is no information but just found some of the DO NOT USE categories!
Not to be used in
People who are very dehydrated.
People with a blockage in the stomach or intestines.
People with an abnormal hole in the stomach or intestines (gastrointestinal perforation).
People with reduced muscle activity in the intestines (ileus).
People with retention of food in the stomach (gastric retention).

Jaime is often dehydrated and clearly has reduced muscle activity, just for starters! So now what? :ybatty:

 

[CDJ]

Niks, have you complained to PALS, Patient Advice Liason Service?
I had to do this earlier last year when I felt I was banging my head against a brick wall trying to get help for Josh.

They were very good. They phoned me as soon as they got the complaint to let me know they were dealing with it. The kept me updated as to how things were going. All people involved in Josh's care were spoken to and my concerns highlighted to them. This did help, it made the medical staff finally take notice of my concerns about Josh and the way handled us after this changed.

Medical staff don't like getting complaints, so ususally if this does happen they sit up and take notice! I hope you get help soon :ghug:

 

[Niks]

CDJ - I did this in Swindon and found them really good, but Jaime is reluctant, we have not been back since making a complaint in Swindon, although the GI there did want to meet with us. She refused as he basically told her she had an eating disorder, and said she did not want to ever see him again.

I think I will leave it until early next week and see if her GI replies once he is back to work properly. If he doesn't then I don't really see an option!

I am concerned about long term use of Citramag, but at the moment this is the only thing that seems to get things moving!

 

[kimmidwife]

Hey Niks,
Just checking in with you. How's your girl doing?

 

[Niks]

Thanks Kim.

She has a lot going on with some weirdo stalking her, so is pretty scared, the Police think they have him now. Fingers crossed!

She has had a lot of pain, she says no more bleeding and has managed to have a BM without Citramag, this is the first since the beginning of December.

She has not had an xray to check pillcam, she wants to 'just get on with it'. She also has not heard any more from Oxford! Grrrrr.

I really want to write a complaint, but she is really reluctant. She has agreed if there is anymore bleeding or worse pain, she will go to A&E, but I am not convinced she will tell me! :ybatty:

 

[xX_LittleMissValentine_Xx]

Niks, what if it isn't "a complaint" but asking for more help?

I imagine that the hospital might find you a bit annoying due to your emailing, badgering for answers, and that Jaime doesn't usually agree to stay in hospital.

I'm not saying that what you are doing is wrong at all, but possibly from their point of view that is how they see it?

If this is the case I don't think a complaint letter would help. Apart from the fact that it goes through PALS rather than the doctors. But I think its worth baring in mind if you decide to write to a director.

 

[Niks]

Yeah Holly, I think you're right!

Often though they don't want her to stay in hospital either, as all they do is pain relief and fluids... So frustratng!

 

[Catherine]

I think part of problem with the hospital is that J has a chronic condition not an acute condition. Hospitals do a acute really well. They don't do chronic well, they can fix the immediate problems eg give fluids and pain meds. Then there job is done.

J needs a specialist in her corner who willing to go the extra mile and get her answers.

Sarah's GI boss was our guy, the first time we met him he told us he would find answers for Sarah and he was sure it wasn't Anorexia Nervosa.

 

[Niks]

Thanks Catherine, she does really need to find someone on her side!

I am really pushing the referral to London. It is a 2 hour drive, which in the big scheme of things really is nothing. Plus we have family that live an hour away, so can stay with them if needed.