Why now

[Karajan]

Hi, I had major surgery in February where afterwards I was very ill. I don't have large bowel but have illeo recital anastomoses. This recent surgery was for decision of adhesions which doc thought were causing me to have small bowel obstructions. Since the op I have had 4 obstructive episodes the last one landed me in hospital as an emergency. This one took a week to clear but I had a CT scan which at the time showed bleeding into the lumen of the small bowel. No treatment for this. I am on azathioprine 175mgs. 6 weeks ago I was getting more trips to the loo profuse sweating day and night and pain again. My GP put me on to budesonide this usually clears up whatever is going on. This time it didn't but I was only on 9mg for 2weeks, 6mg for 2 weeks ans 3mg for 2 weeks. Was at IBD clinic last Tuesday, oh I was also experiencing huge bloating and took before and after pic on my phone and showed the gastro, he said he was sure this was obstructive and that the drenching sweat were possibly due to me losing potassium, sodium, calcium B vitamins. I am already on calcium, prescription vitamins and B12 injections. He said I was to have bloods done and in particular CRP he said if there was any problems with the bloods my GP would contact me. Yesterday I get an appointment for a CT scan on the 17th of September. Has anybody got an idea how bloods would result in a CT scan, I'm worried now have been put back on Budesonide for 3 months pain is still there as is the bloat and pain going round my back, eating fairly well although feel as though food is up to my throat tonight.

 

[CeeCeeGo]

Oh Karajan

I am not sure I can give you any useful advice as it seems that you have been through a lot already and probably know what to look out for.

Maybe they have scheduled a CT to get a better picture of what inflammation you may have, if any?

I am not sure how relevant CRP results are on their own. For example, for the 3 years prior to being diagnosed with Crohns, my CRP was around 40. When my bowel perforated last year it was 400. At the moment it is 8. My GI looks at all my blood results, not just the CRP.

What do you think is going on?

Are you able to speak to anyone (IBD nurse, GP or GI) just to get some advice/reassurance?

I am sorry that I haven't helped you much but my thoughts are with you and I hope you start to feel a bit better soon.

Take care.

 

[Karajan]

Thanks cee cee the doc did the usual screen bloods not just the CRP he said that a lack of essential salts can cause all the profuse sweating but surely a CT scan wouldn't find anything to do with salts!! I think this is a flare and I'm heading for the big guns pred yuk don't want those thought I was going to die last time I was on them. It could be a stricture as well. But honestly I am just scared that its meaning more surgery, really can't do this again seriously I only got back to work in May.

 

[jammy]

Sorry to hear you are in a bad way. I know how you feel about Pred, the bloody stuff seems to send me mad! Had a few CT scans and it is usually done to see if you have a blockage, they would have rushed you into theatre presumably if you had one. Maybe you have such bad inflammation it has narrowed an area of your bowel without actually closing it?? Like the previous replier I'm unsure how to help but just to let you know I am thinking of you and wish you help asap xx

 

[Karajan]

Thanks jammy

 

[CeeCeeGo]

Hi Karajan

As you mentioned salts I just did a quick google and found this http://en.wikipedia.org/wiki/Bile_acid_malabsorption. I am sure there will be loads on here about bile salts malabsorption. I know I checked it out after I had my resection.

Take care hon and let us know how things are going.

 

[Karajan]

Thanks for the information it was useful, but wish whoever ordered the CT had told me and why it's being done.

 

[CeeCeeGo]

I know it's frustrating when the docs don't tell us why. Is there anyway you can find out before you go on the 17th?

:ghug:

 

[nogutsnoglory]

The CT scan like others have said is the more accurate assessment to see ulceration of bowel and infections that blood tests can allude to but not flag by their own right. The thing is why aren't they ordering an MRI instead which has no radiation as opposed to a CT scan. I'm wary of doctors using radiation devices when we have technology than can allow otherwise unless contraindicated.

 

[Karajan]

I could phone the IBD nurse, and as for the CT over an MRI I think it will be down to cost more than what's the best imaging or which has the least radiation I'm afraid.

 

[nogutsnoglory]

Yes MRI is very expensive but if insurance covers it and you don't pay definitely push them for it.

 

[Karajan]

Nogutsnoglory in the UK no insurance medical treatment free

 

[nogutsnoglory]

If its free they should do what is in your best interest and definitely reducing radiation is part of that. Good luck with the imaging.

 

[valleysangel92]

Nogutsnoglory in the UK no insurance medical treatment free

It is free in the sense that we don't pay for it, but in terms of cost to the NHS MRIs are more expensive so sometimes a CT scan is used because of this. If they haven't given you a reason then you have every right to ask them why you are having a CT and why you are having it instead of an MRI.

Some doctors prefer CT scans because they are quicker and less stressful for the patient and less clostraphobic.

It is common practice at my hospital to order CT or MIR scans at intervals to stop disease development in its tracks without using invasive colonoscopies to 'just check it's all ok '. You can call the office and ask for an exploitation if you don't have one.

 

[Karajan]

Think something else is going on again tonight. I had apple at lunch time today and now area wher anastomoses is is sore and touching that area has me screeching. I think there is inflammation in this area and I am about to have another obstructive episode coming my way tonight. It usually starts around 10-11 pm and goes on all night. I can feel this building up and have started drinking a glass of water every 15 minutes to flush it out its when the bonus is trying to get through the narrow area that gives me excruciating pain and often as not has me in A and E not looking forward to this 5th time since my op in February.

 

[Karajan]

Sorry bolus not bonus

 

[Karajan]

Well obstruction no 5 last night. Woke in the early hours in absolute agony, why is this happening. I am careful with my diet but whether its low residue or whorl grain it doesn't work. Had morphine and this helped a bit but its wearing of and pain rising again so need to take some more. I haven't gone to hospital this time as I think it is clearing itself. Pain again round the anastomoses. I have been on budesonide for around 8 weeks now and 175 azathioprine. Not really working.