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Help prior to SeHCAT

I have been reading some of the posts on this site and was hoping for your help. Hubby has had watery diarrhoea since last October. Loads of visits to GP and just given loperamide even though his weight is plummeting. In the end was referred to a geriatrician who sent him for endoscopy . He already had gastritis and duodenitis but they found the latter to be severe this time. He doesn’t see this doctor again until October. Last Monday he was up 7 times in the night and felt so poorly we made a private appointment with a GI consuktant for the following day. This consultant has arranged for a SeHCAT to see what is happening. Looked at google and BAM appears to match his symptoms. This test cannot be done until end of September as we are going on holiday , hopefully, and as you know two visits are required a week apart. Is there anybody who can suggest anything that will help him in the interim? He is doing a dairy free diet for 2 weeks and then wheat free to see if there is a food intolerance. Any advice welcome.

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Try asking your GP if he could trial Questran until he’s tests are done. It binds the bile acids together. I’ve only just started it on a trial (waiting for various results to come back). If you google various ibs groups and read reviews you will see it helps so many people.

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Thanks, we have got to deliver specimens to GPs surgery tomorrow so could try and get message to a doctor. Impossible to see one for weeks, we actually paid to see a GI consultant last week as our doctors just keep handing out Imodium.

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Good luck with it all. I refused Imodium because that just masks the illness. In a way so does Questran but I think that’s better than just blocking yourself up with Imodium. With Questran you still have regular bowel movements with no rushing to the toilet and no dreaded diarrhoea. Let me know how you get on.

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Again, thanks for replying, Imodium doesn’t block hubby up. He went 9 times yesterday and so far 4 times today. During the night he cannot get to the toilet quick enough and these accidents are upsetting him. I change the bedding most days together with pjs. He has SeHCAT 28 sep and then one week later. We have typed a letter to GP as do not think we will get to see or speak to him for a while. Will let you know what happens.

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Yes! Questran works the same was as Welchol and Colestipol. I do not understand why doctors are not aware of this drug, since so many people have problems with diarrhea!!! Just do not get it!

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Yes...I had chronic diarrhea for years and years. My doctor put me on Welchol which works like a charm! I switched to Colestipol because it was cheaper...works just as well. I take 5 pills a day..3 in the morning and 3 at night, with meals. I haven't had diarrhea since starting these wonderful meds.!

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Sweetsusie, thanks for your reply. We have just got back from visit to out of hours GP. Hubby was very sick and dizzy and very unsteady on feet. Rang 111 and they sent us to the clinic. He was not dehydrated enough to keep in hospital so given anti sickness tablets and rehydration crystals and sent home. I asked about the medication for stopping his diarrhoea and was told it is only to lower cholesterol! I have read up on it and that is a load of rubbish. Will contact own GP tomorrow. We are due to go on holiday in 3 weeks but think we will have to cancel if hubby continues feeling unwell.

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Yes...that is absolute rubbish Bazmack. I don't have high cholesterol, nor do I have Type II diabetes....both Welchol and Colestipol are used to treat both of those conditions, but are also used as an anti-diarrhea, because they are bile acid sequestrants, which means they stop the bile going to your intestines, which is what causes the diarrhea. These people need to get educated better and quit acting like their patiences don't know anything...they are the stupid ones, I believe. Anyway, I hope your husband will be better soon...am thinking about you guys!

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Thank you sweetsusie, your messages mean a lot. My family just think it is just an upset stomach and really don’t understand why we rarely leave the house. Trying to have a bit of a rest on the settee, hubby has had a nap upstairs but he is up and down to the bathroom. I have been on British Heart and Lung site for a few years and think all the sites are very good at supporting members. Have a good evening.

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You have a good evening, too!

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Another very bad day. Tried to get house call as hubby being violently sick as well as diarrhoea. The on call doctor phoned and firstly spoke to hubby and then I took over as hubby found it hard to concentrate. She realised that he was poorly and sent the surgery paramedic to see him. Really doesn’t know what is wrong with him, coming back tomorrow to take blood. Cancelled our holiday to Maldives which was to celebrate both of our 70th birthdays. Will have to fight to get money back. We cancelled a holiday to celebrate our 60th due to my respiratory failure and it took ages to get any money back. Thank you for listening.

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I am so very sorry, Bazmack, that you and your husband are going through this! Sounds to me like your husband should've been taken to the hospital! Maybe you should go to the emergency room and have him seen there...perhaps they would admit him? I don't know how your system works over there, but I know here in the States, that is the best way to be admitted it seems. Keep me posted!

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sweetsusie, the NHS here is dreadful at the moment. If you go to A & E you can wait hours and hours and then they just send you home even more stressed out. We paid privately last week , about $200 for 15 minutes. This consultant has read all my husbands files and is doing all the tests on NHS, nice man. Which part of America are you in? We live on the South Coast of UK near to the sea.

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Well...that's not good. The system here isn't much better, actually. I live in Colorado...in the Denver Metro area. I was born and raised in Boulder, CO. You live by the Sea...must be beautiful! I live by the mountains and used to be an avid hiker..hiking the big mountains, which are called "14ers," because they're 14,000 feet or above sea level. Beautiful views up there.....

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The only really good thing about living near the sea is the pollution levels are very low. At the back of us are The South Downs. We have never been into walking/hiking. Our friends go to America twice a year and hire a car and drive thousands of miles. They recently drove around the Grand Canyon area. They love it. My youngest son visits about once a month as he is a scientist and gives lectures in various places, he loves it as well. Have a lovely day or night, not sure of the time difference.

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It's Monday and the time is: 8:40 a.m. right now...you have a lovely day or night, too!

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It’s Monday 15.40. So we are 7 hours ahead of you.

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Good to know!

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If I were you I would make sure you have dioralyte powders with you at all times so that hubby doesn't get too dehyrated. Cheapest place to buy them is Savers. When you are like this they are worth their weight in gold. You really should be able to make an emergency appointment to see your GP as soon as possible as you have had to take hubby to hospital about this. I have been put on a low FODMAP diet to see if that made any difference to me as all tests including SeHCAT scan came back normal - but then during the week between the scans I had two days of constipation and two days of diarrhoea - maybe they cancelled each other out? LOL

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Desanthony, we have lots of dioralyte, it is just hard to get hubby to drink them as he feels so sick or is being sick. Checked out the side effects of the tablets he was given for anti-sickness and they can cause nausea and vomiting. We just can’t win lately. The GP sent the practice paramedic out this morning, he is coming back in the morning to take blood. He needs to do it before 11 because of collection times. Hubby is feeling so weak and I know he would feel better in hospital, he always says he feels safe there. I hope they find something in the Sehcat so they can start fixing him. He has had loads of tests and haven’t really found anything we didn’t know about. Will update if anything changes. Have a good evening.

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HI, Hope you manage to get something done soon. Brilliant isn't it that a tablet you take to stop vomitting actually can cause it! Ironic eh?

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Hi, it seems like most medication is making hubby ill. He is hardly eating as he still feels sick. Decided to open the tiger balm and rub into his chest. He seems a bit bunged up so if we can clear that the sickness may go. Will give anything a try, still waiting to hear if bloods back yet. The GP receptionist said a week! Have a good evening.

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Take care.

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Been a bit of a pig of a day. Hubby very weak. Phoned GP surgery and spoke to paramedic who called the other day. Said blood tests all fine, stool sample results not back. He said he would speak to doctors and comeback to me. Did he ****. I am getting really fed up with people not returning calls or at least a quick call to say no update yet. I know we are not the only ones wanting answers but a bit of thought would be nice.

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What a pain! Have you heard anything yet? Sorry did not reply earlier but been busy in the garden while the ground was soft enough to dig and not so damp that everything was muddy.

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meant to ask if they have given any thing for the nausea? I used to take motillium regularly taken - I think, half an hour before breakfast and lunch - might be wrong about dosage as on so many different pills and potions at one time.

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No update really, gave him anti sickness medication yesterday but nothing today. He was meant to have Questran today but shouldn’t have it prior to SeHCAT.

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Oh well that is good he is going to get something at last. I could never quite get any answers as to what could and couldn't be taken before the SeHCAT my hospital said there were no medications I couldn't take - I asked because in the pamphlet about the SeCAT they said to continue taking all my bowel medication but other people had told me they had been told not to take any bowel medication for a few days before and for the week between scans but they insisted this was not the case. Like a lot of things it seems that different hospitals have different ways of doing things. I hope the scan sorts things out whether by telling you what is wrong or at least by ruling out others so that the diagnosis and correct medication is given quickly.

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The consultant wanted him to have Questran yesterday. I showed the nurse the nuclear medicine leaflet saying don’t take it. It took a lot of calls to finally say don’t take it. He is constantly having upset stomach and feeling sick but because of Bank Holiday not much being done. Thank you for your posts.

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I don’t think I said he was taken into hospital last Friday as BP went really low when he stood up. In a room by himself due to his upset stomach.

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Oh wow! Hope they do something soon. Have you tried giving him something like complan or "ensure" if he can kp it down?

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The hospital are measuring everything in an out. It is nearly all out. He just cannot stop the stomach upsets.

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Oh my goodness me. Good Luck with all this.

Des

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How are you getting along?

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Thank you for asking. They have just done CT scan of chest, abdomen and pelvis. Until all the tests are done they do not know how to treat him. He is still in a side room as he is having at least 30 trips to his ‘throne’ a day. I managed to get him to eat some soup that I took in but have now been told by the chef that they are not allowed to heat it up any longer! Will update you when we get any results.

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Oh bless! We have come across this in hospitals too. Apparently it is a health and safety thing - and not knowing what is in the soup but really are you going to give him something bad? Hope they get the test results soon and can start treating him with something that works. Keep in touch.

Des

I think 30 times or more breaks my record and my sister's.

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Tests results back. Unfortunately they were all negative. They did a test on his adrenal glands and cortisol levels, negative. He has got the SeHCAT test today but as you know you then have to wait 7 days for the scan. He is now being sick, all consultant did was prescribe increase in loperamide. When nurse told him to take his own tablets, saving money, he was only told to take 4 mg, same as before. I feel I am fighting a losing battle. We were due to go on holiday next week but have had to cancel. I took the form to surgery, paid £30 for it to be completed, you have never seen so many mistakes on a form. It was a locum that completed it, he gave my husband angina! I phoned surgery to be told by receptionist that if it’s on the form he must have it. Long long letter delivered at 7 this morning requesting new form to be completed correctly. The saga goes on.

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Oh Dear Me! That makes me want to swear and I don't generally do that. How exasperating for you. Is he taking something to stop the sickness? Has he been weighed to see how much weight he has lost since this has been going on? It would be good to have a record - its what I did ast year when I lost 2 stone and that made the sit up and take notice as I lost that in just less than 3 weeks.

As for that form and the receptionist's attitude. Just what you needed! I think I would change my GP once everything is settled if you have another surgery near you. Though is the other surgery any better - that's the thing? Let's just hope that the Scan shows something up that can be treated.

Such a shame that you have to miss your holiday. Fingers' crossed that once everything is sorted you can go away on a lovely holiday together.

All the best and keep in touch.

Des

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Hi Des, things haven’t got much better I’m afraid. The ward didn’t even make arrangements for my husband to be taken to have his radioactive tablet. Anyway everything went ahead. Testing now for coeliac disease. Dietician has started him on fortisips as he is barely eating. Before he went in to hospital he had lost 39kg in two years. Recently he was dropping a kilo a day. He is so thin now. What was your diagnosis ? How are you now? Nothing will be done over the weekend I expect so will update you next week. We did get one bit of good news in that the hospital doctors can complete our holiday insurance form. Taking another form in tomorrow.

Enjoy your weekend.

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So sorry to hear that things are not getting any better for you both. Fancy they didn't send him for the radioactive tablet - honestly! Glad it all went ahead. Hope it does some good. Glad to know that they have started to try and get some nutrition into him. A kilo a day is a lot to lose. I still have not had a diagnosis but doing the low FODMAP and gluten and lactose free diet seems to have made a difference this last 2 weeks - though I have also been taking immodium and isphagula husk more regularly as well which may have made a difference. I finish the two week diet tomorrow and will go back to my ordinary food and see if I go back. My problems started straight after a sigmoidoscopy and gastroscopy to ascertain why I was anaemic! I had had radiotherapy to the prostate 6 months previously which also could account for my problems but so funny that everything started the very night of the sigmoidoscopy and gastroscopy. I lost 2 stones in about 2 weeks vomitting and having a bowel movement after practically everything I ate or drank - even just a glass of water! Very hard to get help but a friend of mine was a head pharmacist at Boots and sugested things that would help and that was far more than my own GP did for me or the hospital. Now, over a year on I am slightly better but still having problems and after trying to persuade the gastro department that this is not all to do with the radiotherapy - they said it was, the radiology dept and oncology dept said it was unlikely to be and just because I had radiotherapy that could cause these problems they shouldn't think that nothing else could be wrong, the gastro dept have declared that it can't all be down to the radiotherapy so long after it occurred! Hence I was sent for the SeHCAT scan am waiting for the breath test, and am doing this diet. I do keep asking them if this could be a kidney stone or collitis as my Father and sister suffered from it but they say no. Anyway, we will wait and see what they can come up with. I seem to be quite stable now even though I have some embarassing bowel and wind problems I am getting on OK. Sorry to have gone on about myself for so long. Just hoping that your situation changes for the better very soon. Glad to know that the hospital can complete that form for your holiday insurance. Take care of yourself and stay strong.

Des

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Des, you have certainly been through a lot. I was lucky, even though I had a malignant tumour removed I didn’t need chemo or radiotherapy.

Barry’s heart rate dropped a lot yesterday so the on duty doctor came, he was so young, didn’t know about what Barry has been going through. I asked if it could be his bisoprolol having an effect. He has stopped it for 2 days. The only good thing that came out of the visit was he more or less said ‘eat or die’. Barry has been very scared of eating recently as it usually goes straight through.

Most probably won’t find out anything today, I thought hospitals were stopping Monday to Friday treatment only.

Hope you have a nice day, it is supposed to be warm today.

Denise

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Wish I could have gone the same way and had the cancer removed but it looked like it was beginning to break out from the MRI scan so radiotherapy was the right way to go. So far it has worked which is good. It is a little unnerving when your doctor looks younger than your grandson! My grandson is 14 but I swear some Docs look even younger than him. Bisoprolol is quite a strong drug and I couldn't get on with Bisoprolol at all. I was put on a few beta blockers and calcium blockers but within 3 weeks I was getting breathless and dizzy. Just before my successful cardioversion I was put on digoxin 125 mg that went the same way but then was put on 62.5 mg and that seemed to work well for the last month or so before my cardioversion. Hope Barry managed to keep some food down today and they find something out very soon.

It was a lovely day today hope you managed to have some nice moments.

Des

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Des,

Barry has started eating but only soup. Trouble is he is feeling sick and having to take anti sickness medication. His heart rate is better but now blood pressure going up. He does take another drug , canderstartan, so hopefully this will reduce it. Hoping doctors well be round today and may find out more.

At home he sleeps really well but in hospital he is sleeping very badly. I have never slept well and can see when Barry awake, he is doing a lot of research into his various interests and gets e mail replies. Up at 4 today, with the travelling every day I am shattered by the afternoon.

Will update you later.

Denise

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Sorry been really busy this week and not seen this until now - so sorry. Glad to hear that he is eating. So long as the medication can stop the sickness that is something. You must be so worried. Hope they manage to get his blood pressure down soon.

You know I don't think any one sleeps well in hospitals. What with lights on and talking. Last time I was in hospital I was kept awake by someone snoring quite loudly all night. I ended up taking my book to the loo for an hour! My wife brought me in a radio with a pillow speaker or those small headphones to use at night - it helped a little but never get a good night.

Hope you are managing to get some rest yourself - you need to look after yourself so take care.

Des

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Des,

Barry not too good. They did another endoscopy yesterday and just for fun, it was his 70th birthday, a sigmoidoscopy. They did these as after relooking at his CT scan they found something. Pretty poor not to have seen it when they first looked. Anyway he had a really bad reaction to the sedation drug and I went back to the hospital and left at 10pm. During the night he started passing blood so was put on heart monitor and a potassium drip. I got to ward at 10am this morning and saw the consultant. He was put on nil by mouth for the third day as she thinks they might have to take him down again to find out what part of him is bleeding. They may do a transfusion later today with a drip to help his blood clot. He has the start of bed sores so his mattress was changed pdq. SeHCAT scan tomorrow so we will see what happens next.

I am extremely worn out as I am at the best of times a bad sleeper but it is non existent now.

Denise

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Oh my goodness! On his birthday too! I do hope they can do something to stop the bleeding. I just can't believe that they have now seen something on the CT. Just shows you it may always be advisable to ask for a second opinion - yes it makes things take longer but then your journey has been too long anyway and it may save other procedures like those this morning which have caused this. Oh dear it makes me quite cross. I don't know how you are coping I really don't! Hope the SeHCAT scan shows something up too - anything to help and get this sorted. Bed sores must be the icing on the cake eh?

My wife and I will be thinking of you. You must try and rest - maybe try a relaxing bath if you can before bed that may help. I put the TV on sometimes when I can't sleep as the flickering and low noise sort of lulls me off and can guarantee that if something comes on that I want to watch I fall asleep and then wake when it is finished.

All the best to you both.

Des

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Thank you Des, I do find just listening to repeats of programmes I like sometimes works. I put the iPad on and turn away from screen and imagine the scenes. Trouble is not working, stress has overtaken everything else. Unfortunately we had our bath taken out years ago when we had bathroom upgraded. I do miss it.

Have a nice evening.

Denise

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Like the idea of listening to repeats and imagining the scenes - pictures are usually better in your imagination aren't they? I totally understand about the stress you are under and the fact that with not working it is all you can focus on really - and of course what else would you focus on it is a most stressful time when our loved ones are very ill.

We debated whether or not to have a bath in our new place - we could have had either a shower up and bath down or vice versa or two showers but in the end decided to make the bathroom upstairs larger to accommodate a walk in shower and a space saver bath and have the walk in shower downstairs - as if we have to move down to the downstairs bedroom at any time because of health needs then it is unlikely we would be clambering into a bath - though my Mum made good use of a bath lift as she hated showers. We generally shower but even though we now have to pay for water via a meter for the first time ever sometimes it is nice to soak in a bath.

Hope you manage to get some rest and things get sorted for you both.

Keeping you in our thoughts.

Des

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Morning Des,

Barry was nil by mouth for 31/2 days as he started bleeding after the scopes on Wednesday and they were taking him back down on Thursday then Friday. At 6 last night they decided not to redo scopes and ended up giving him blood, plasma, vitamin k and an acid which helps clot his blood. I think they cut something when they did scopes on Wednesday. Of course they won’t admit it. A consultant from Worthing hospital is coming over to Chichester today to see him today. I got here at 9 as I do not want to miss visit nothing yet.

Hope you both have a good weekend.

Denise

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Hi, We were in Eastbourne over the weekend at a get together with relatives. So must have been quite close to you! We like Chichester. My brother's first wife was from there and we wish we had boght her Mum's old house off her - it was just lovely - only an old council house but it was just right inside with lots of room and a nice sizeable garden front and back - all level. My sister lives in Gosport area and then other cousins around Andover, Eastbourne, Newhaven, Worthing, and Brighton. Thing is not all of them are talking to each other so had to try and visit others without telling the rest so walking on eyelashes time - quite tiring! Stayed with my son in Wokingham so had a nice time with him and his wife.

I would say they have definitely cut something while doing the scopes last week. It is a risk when they do them and should tell you that, or it is all in the small print on the consent form. Hope the blood etc that was given does the trick. I wonder what they will learn from the secat scan and will all this actually skew the results as he was nil by mouth and all this other trouble?

Hope you got some sense from the visiting consultant? Did he turn up? My son came all the way down to West Wales - the very tip of West Wales too, to speak to my consultant years ago when I was really ill and had an emergency operation and my wife made arrangements with the consultant to meet in the afternoon - actually rang his secretary and agreed a time to meet but he never turned up - there was some excuse but didn't really believe it as he could have let the ward know and didn't. One of his minions turned up the next day. In the end one of my wife's nieces who had been a nurse got in touch and told us the questions to ask - they weren't answered particularly well so in the end the consultant I was with suggested that we see another specialist consultant and referred us on to someone who could do the operation necessary without the collateral damage that would have been done by the operation on offer at the local hospital. Don't hear of that very often so I was really pleased with him about that. He has retired now but really quite a good guy.

Here's hoping this week is a better one for you both and things start getting better. You must be absolutely worn out so make some time to relax and rest as often as you can.

Speak soon.

Des

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Des,

My eldest son lives in Eastbourne, we used to visit quite regularly but the trip is too much for Barry with his stomach problems. Didn’t see consultant from Worthing until Sunday. He was very good and actually amended drugs on their system which nobody seems to have done. All results so far are negative. An MRI scan was the suggestion of both consultants to look more closely at small bowel. Apparently the senior radiologist says there is nothing to be gained doing this! So we are no further forward. Still waiting for coeliac blood and the biopsy results to come back.

Thank you for being so kind.

Denise

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So, still no further forward then. How disappointing. Maybe different drugs will make a difference but it will take time. I have just finished all my food diary for the dietician and she is going to call this afternoon to discuss findings. Still getting embarassing burping but the other end seems to have settled down. Not taking immodium so often but taking fybogel to bulk up the stools seems to have changed things. Don't honestly think the low fodmap, lactose and gluten free diet made any difference as looking through what I have written over the past month I was a little worse when on it. We shall see what she says. I was glad to see that as I was not looking forward to going back on the diet and staying on it. The bread is awful! Lactose free milk wasn't so bad but not that good either. Still hoping that things will start to settle down for you and/or you will find something that can be done or taken to help. Take good care of yourself.

Des

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Des, we have a diagnosis. Barry is suffering from Coeliac Disease and lymphocytic colitis. It showed up in the biopsies taken last week and apparently can only be seen under a microscope. He has been started on steroids and different PPIs to try and calm the soreness down. He will have to stay in hospital until his body starts reabsorbing minerals etc as his potassium level keeps falling. Just had a major clear out of my cupboards and my son is rubbing his hands in glee as he will be having all the beers we have stored in garage.

Hope you get some good news.

Denise

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Thank goodness for that! So pleased that you now have a diagnosis and new meds have been started. Hope they work well and quickly. Well it is a grey cloud with a silver lining for your son! Things are on the up for you now so take care of yourselves and try and relax. Really pleased for you.

Take good care of yourself and each other, All the best

Des

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Try fodmap diet.

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We were given that diet a few months ago by GP but doesn’t seem to work, on gluten free now, have done dairy free. Have found an app which is very helpful...Food maestro.. good for doing a weekly shop.

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Have u tried Xifaxan?

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No, we have to wait for all the tests to be completed.

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Have all of his stool tests been done and what has he been tested for? I certainly hope he has had stool cultures and tests run to rule out infectious causes of diarrhea.

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Morning, stool samples were handed in on Monday to test for two different things, one was elastase and offhand cannot remember the other one. Hubby had sample tested last Nov for various infections but these came back negative. On one of our many A & E visits they tested for Addison’s Disease, again negative. He is not really eating but still doing many trips to the toilet.

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