Yesterday, I went to the hospital.
I got up at 7-15 am to leave the house at 8 am, to miss the morning traffic, I got to the hospital at 8-40 am and my appointment was for 9am.
The consultant was late because of the traffic on the M1, he was driving up from Nottingham and didn't arrive until 9 -20 am, rather flustered and stressed out.

He started off by asking me why I hadn't been for the colonoscopy and I noticed a big DNA stamped in red in my notes ( Did Not Attend), so, I had to explain that the colonoscopy was arranged whilst I was in hospital when they were thinking of discharging me - then I was taken down to theatre and told I didn't need a colonoscopy and it should have been cancelled.... it obviously wasn't cancelled and it looked 'bad' on my part.

Then the conversation went something like this....
Him: So, you haven't had a colonoscopy? - I'm thinking ffs, this is a good start, what have I just explained, read my notes.
Him: Have you had an M R I scan?- answer NO.
Have you had a gastroscopy /endoscopy?- answer NO
Have you had a stool sample taken,- answer NO
Have you had a blood test to see if the Crohn's is active,- answer NO

What medication are you taking for Crohn's. ?
Me: Erm nothing, I'm hoping that's something you're going to decide today.
Him: How have you been since the operation? So, I tell him about the two main things that are troubling me - the pain in my right side and the heartburn/indigestion that's waking me up in the night and 'burning' my oesophagus... I can live with the bloating, flatulence and erratic bowel habits.
Him: How are your bowels?
Me: Fluctuating between long periods of constipation and then short periods of diarrhoea.
Me: Are you going to prescribe something for the heartburn, it really is painful and occurring nearly every day now, chose what I eat.
Him: Oh no, I want all these tests done before I decide what to do next.
Me: Can I not have something like Lansoprazole that they gave me in the hospital for the acid?
Him: No, it will affect the tests, just take something like Gaviscon.
Me: (thinking),oh god, how many more weeks/months before I get some medication, Rennies and Gaviscon don't work anymore, Rennies are now making me vomit.

I was at the hospital for nearly 3 hours - I was sent off to book the camera jobbies - I'm having top and bottom done on the same afternoon in May - that was another half an hour wait whilst the nurse booked the date and got all the paperwork and information packs together for both procedures.

I'm really really NOT looking forward to the gastroscopy /endoscopy, I'm sorry but they'll have to sedate me - I've got a thing about being sick and swallowing tubes. It stems back to when I worked in A& E many moons ago and we use to do gastric washouts on patients who'd taken an overdose - years ago the tube was the size of a garden hose - the tube may have dramatically reduced in size over the years, but the gag reflex is still something that I hate and being sick. I'm getting stressed out just thinking about it and there's weeks to go yet, and the litres of solution that I've got to drink.

Then off to another desk to book the blood test in another queue and told the waiting time for blood tests was 2 hours, so, I asked if my GP could do it - I called into my GP's surgery on the way home to make an appointment and the practise nurse( bless her) she did it there and then.
The poo sample, you really do not want to know about that.
I'm waiting for the M R I scan appointment date to come through via the post.

It seems he (consultant) is throwing the works at me now. He wants to know about the condition of my entire digestive system- Crohn's can affect a person from their mouth to their anus.
Whilst things are moving at last - any progress regarding medicines won't happen for a few months, and until then I seem to be stuck in the situation I'm in today.... IMO: all these tests should have happened months ago - I'll be lucky if I get it sorted before I go away on the 1st July x 2 weeks.

Admin
Why am I having to write M R I this way with spaces? otherwise it comes out in a strange format of Not Allowed.?

Sanji x

Hi Sanji, sorry to hear that you're still suffering with the heartburn, it's very painful I know I am glad to hear that they are giving you a thorough examination although I know it won't be pleasant for you. Let's hope they get it over and done with before your hols so that you can at least have some medication for it.

Not sure re M R I will go and have a look

Should be sorted now MRI

I feel for what ur goin threw, ive a daughter who was 11 when she started being ill. shes now 31 this yr and still goin threw hell with chrohns, shes had 5 operations, had the stoma bag in 4 times, been on all sorts of drugs, got no imunne system now, ..... is now on a new drug that she injects her self one a week for 6 months, but its a fight with every body to get it, as its just not handed out by doctor, its funded and they...( hospital surgeon her own doctor and a load of others) have to sit and review the case to see if it will do her any good, surly anything is better than doin nothing, her case is very hard as shes also anorexia from 16. so getting her to eat is a problem on its on. shes nearly five foot and weighs little under 6 stone. was told that by being anorexia and not having a period she would never have a baby, well she had her 1st period at 21 and went on to have a girl. but yes it had its problems with her body. 6 weeks after the birth she took a slight stroke and was told never to try for any more babies. so she has got the one little girl she wanted and she,s a brilliant mum. she just lives day by day now, and takes it as it comes , good/bad.

Aww Tammie I really do feel for your daughter, what a hard time she's had So glad she's got her little girl though

for you all

Hi Tammie.
Oh my lord, how awful for you all. Your story certainly makes mine fall into insignificance, when you compare it against what your daughter has had to endure.
I'm not very good at writing emotional posts, because although I think the words, the words never seem to come out right when written down. I can rant away all day long with my opinion, facts and figures, but I find it hard to express how genuinely sorry I am to read posts like yours.

Basically, I just want some medication to ease the symptoms and to be able to get on with my life (what I've got left of it) - I know nobody likes being ill and until last year I was as fit as a fiddle (for my age).
My NHS hospital records would show that I've had two babies and a hysterectomy ( 43, 33 and 20 years ago) and I hadn't been to the doctors for years, in fact the last visit was 3 years ago to see the nurse, just for the flu jab.
And now I've had all this bad health reaped onto me in the last 14 months - first copd and then crohn's and it just gets me down at times, but then when I read what other people are suffering, I should thank my lucky stars and snap out of it.

Like Glynis has said- I'm glad she has a little girl and I hope life will become easier with this miserable disease.
Kind Regards
Sanji x

Sanji wrote:

Hi Tammie.
Oh my lord, how awful for you all. Your story certainly makes mine fall into insignificance, when you compare it against what your daughter has had to endure.
I'm not very good at writing emotional posts, because although I think the words, the words never seem to come out right when written down. I can rant away all day long with my opinion, facts and figures, but I find it hard to express how genuinely sorry I am to read posts like yours.

Basically, I just want some medication to ease the symptoms and to be able to get on with my life (what I've got left of it) - I know nobody likes being ill and until last year I was as fit as a fiddle (for my age).
My NHS hospital records would show that I've had two babies and a hysterectomy ( 43, 33 and 20 years ago) and I hadn't been to the doctors for years, in fact the last visit was 3 years ago to see the nurse, just for the flu jab.
And now I've had all this bad health reaped onto me in the last 14 months - first copd and then crohn's and it just gets me down at times, but then when I read what other people are suffering, I should thank my lucky stars and snap out of it.

Like Glynis has said- I'm glad she has a little girl and I hope life will become easier with this miserable disease.
Kind Regards
Sanji x

thank u for the lovely comments, but if she were to type to you here is what she would say(..... not a lot we can do bout it now, just take each day as it comes. good/bad. and keep smiling threw the tough days, it will get easier when they sort you out with the proper medication. ive got copd, and only learned last yr I have ihd, for those not medically intune , it means intarcia heart desease take care and read up on the chrohns that's what we had to do for gemma xx

Sanji wrote:

Babs, I'm pleased that you've finally got a diagnosis and some medication. I hope the medication improves your symptoms.

there are times when I'm in so much pain I don't know what to do with myself.
sometimes during a bad bout the only relief I get is to break wind, which is somewhat embarassing!!!

I can relate to that - some people are unsympathetic and think you're suffering from SSA syndrome (Sadly Seeking Attention).
I was very reluctant to contribute to this thread that my friend Betty Boop started whilst I was in hospital, so, they'd get a lashing from my tongue if they implied that I was 'putting it on" or looking for some attention..... It's very real, at times the pain is unbearable, it's incurable and life changing.!
I can either talk about it in here or go off and post in the Crohn's forum, either way it makes not one iota of difference to me.

I can get up in the morning and feel fine, and then by dinnertime (for no obvious reason) have my guts hurting like hell - I'm blessed with a good understanding husband who has read leaflets and other articles I've printed off.
He's not just accepted that I have Crohn's, he's got involved too, especially with the food and cooking - poor booger is banging his head against a brick wall deciding what to cook that won't set it off or he's having to cook two completely different meals every night.

Stress doesn't help, but as I tell hubby, I'm stressed because I don't know what's causing the pain.

It's natural to feel that way and the 'not knowing' is a very difficult period to get through. Stress does indeed exacerbate many conditions. Laid in a hospital bed for weeks and looking at people who have had life saving major bowel surgery, it was easy to get depressed and it sent my mind into overdrive, fearing the worse.
I think once you have a name for whatever ails you, you can educate yourself beyond what the doctors are limited telling you, which is because of the consulting time restraints placed on appointments.

Read specific forums - not just articles (which in some cases are not helpful at all, in fact some are tripe and downright dangerous) - read posts by people who have IBS, and then you realise that you're just 'one of many', and whilst it's an individual thing, they pass on information that may help.

I left hospital with a two page leaflet that told me nothing that I didn't already know...and the 'after care' ? well there lies another tale.
One thing I'm going to do within the next few days, is buy a RADAR key which unlocks the disabled toilets - I cannot afford to stand in a queue for the ladies toilets when the constipation has stopped and the diarrhoea comes on.

Sanji x

my daughter applied and got one of them keys, were she can go in to any toilet in a hurry if needs be, which is quite often, ive even seen her carry a small bag with her with fresh under wear in it and a wash bag . but as she says its part of my life now were I go the bag comes with me bless her .

It's going to be fun next week (not).
Appointment for the MRI scan came through - next Thursday 1st May and then 5 days later the top and bottom camera jobbies - I've got to drink that not so pleasant tasting laxative for both the MRI scan and the camera jobs...4 blinkin sachets (at a litre a time) for the camera jobbies.

One thing for sure, I won't be going far for a week, I'll probably be spending the week in the bathroom When I was in the hospital, the consultant said to me that whilst I'd had no symptoms, I'd had had Crohn's for a long time and if I 'look back' certain things might fall into place.

Last year whilst I was in Spain, I went to the hairdressers that I usually visit, for a trim, and she mentioned that my hair was going thin on the temples, and to be honest, until she pointed it out, I never noticed it with being grey and my eyesight not being as good as I'd like it to be.

For years I'd had very short hair, so short that I could wash and towel dry it, and be ready to go. The last time I'd had it cut short was over 3 years ago in Australia, and apart from a few trims to get it all the same length, I'd just let it grow. 3 whole years of going through the stages to get it all the same length.!

I meant to have it cut before all this (Crohns/ hospital) happened, so my hair got another 4/5 months growth to add to the length, which resulted in it being too long and the longer length hanging down my back (imo) didn't do a woman of my age any favours.
So, when I was in Spain in March, I went back to the hairdressers and had it cut into a 'bob' that just touches my shoulders, but looking back since March, I'd noticed that my hair seemed thinner.

And now, I'm losing my hair, there's hairs all over the place, every where I go I leave hairs, it's coming out even if I just run my fingers through it - I'm frightened to wash or brush it.

I'm not on any medication, so, it's not any medicines side effects that's causing it - it can happen after surgery/trauma because your body sends all nutrients to the major organs and your hair gets put to the back of the queue...... and it can happen because of Crohn's.
I thought I could put up with most of the poo from Crohn's, but not losing my hair.
This is really upsetting me. Tbh, I'm so upset that I feel like having it all cut off, back to within 1 inch of my scalp.

Sanji x

Awwww sending you loads of hugs & of course, thinking about you

You could try prenatal vitamins which are supposed to be good for your hair?

Thanks Glynis

You could try prenatal vitamins which are supposed to be good for your hair?

Glynis, you must be psychic - Believe it or not, I had to go to the dentist last week and next door is the chemist - I bought some Vitamin B complex tablets that I've started taking every day with my dinner, so that they don't upset my stomach.

People who have had a resection in the part of the bowel called the ileum, (this is the last bit of the small intestines before it joins the large bowel), they can have a Vitamin B12 deficiency, because Vitamin B12 is absorbed by the body from the ileum section, and a deficiency can occur because the ileum is the site of most resections due to Crohn's ( including me) and depending on how much bowel you've lost, it will cause a deficiency, which can result in (amongst other things) hair loss.

I was going to buy just Vitamin B12 tablets, but decided to get a B complex tablet instead.
I'm going to have to go back to the doctors, I have a feeling though that he will just tell me it's part of having the stress/ trauma associated with surgery and Crohn's, but while I'm at it, I may convince him to check my thyroid.

I guess some people will be reading this and thinking it's no big deal to lose your hair, when others lose it through chemotherapy and have cancer. well, it's a big deal to me. Please note* I'm not and never would try to compare these two very different diseases.

I'm just trying to bring to people's attention that having someone tell you that they have Crohn's and whilst they might look well on the outside - there are a lot of other symptoms that manifest in other parts of the body and it's not just about having dodgy sensitive guts.

To say I'm pretty well upset at losing my hair, it would be an understatement - Some Crohn's sufferers report losing their hair permanently, some lose it through the side effects of medicines, some have regrowth after many months, and some have regrowth that remains sparse and they never get their hair back to how it was before diagnosis.

Sanji x

Losing your hair must be the last straw for you Sanji. I do hope it is only temporary and it comes back sooner rather than later now you are taking B12. Those who think it is 'no big deal' have obviously never experienced it, but many of us can understand just how devastating it must be even if it hasn't happened to us.

In the meantime you might consider having it cut a little shorter. I certainly don't recommend a crop, but just a couple of inches below your ears rather than down to your shoulders. I did this a few years ago and everyone says it makes me look younger.

Best of luck this week with the MRI scan and the camera exploration. You know we'll all be thinking of you and wishing you well.

Sanji, I know that I would be devastated if I started to lose my hair or it was thinking for whatever reason it I wondered if you had thought of using one of these latest caffeine shampoos? I know that they were originally brought out for men experiencing make pattern baldness and that there are now some aimed at post-menopausal women but a friend's daughter who was diagnosed with Crohn's more than 10 years ago in her 20s and was really upset by the way her previously lovely thick hair was getting decided thin has been impressed by them and reckons it has helped. Her hair has recovered a lot and of course it might be due to other things - she takes vitamin supplements as you are giving a try and she is very, very careful with ensuring that she has a really good well balanced diet but it might be worth giving a go?

SM

In the meantime you might consider having it cut a little shorter. I certainly don't recommend a crop, but just a couple of inches below your ears rather than down to your shoulders.

Aslemma, I spend hours thinking what to do for the best, I have been fighting any suggestions about wanting to use any scissors on it - I know that sounds stupid, but it took me so long to get it how I wanted it and a style that I was happy with.
Having hair so very short, I failed most times when I tried to let it grow, because we all know that there are stages where you can do nothing with it and it looks scraggy, so I failed and I went and had it cut short again, but this time I was determined to let it grow.

I'm one of those people who isn't bothered about designer clothes, shoes or handbags and most years the fashion passes me by - I would go out in rags as long as was happy with my hair. and now it's thin, dry and it's gone a lot greyer...... it's completely wrecked, I look like someone 85+ years old,

I wondered if you had thought of using one of these latest caffeine shampoos?

I'll be honest and say that I've never heard of this shampoo, thank you for the information, I will go google and investigate further. I've been digging my old aromatherapy books out for instructions to make a blend of essential oils (in a carrier oil) to massage into my scalp. Rosemary is good for hair.
What's so chuffing annoying is that I had a total hysterectomy at 46 years old - I had 10 years of HRT patches before I weaned myself off them, and then I had a few years of occasional mild hot flushes, but it never affected my hair.

Sanji x

Right girl, let's concentrate on your hair as I can imagine how frustrating it must be for you. Try an oil mask (argan oil is supposed to be very good) and get a bit off the length (no crops though). Try a colour rinse if you don't want a permanent colour to start with, though I use Nice and Easy which is a permanent one and covers grey very well. No drastic colour changes but choose one which is a shade lighter than your original colour as it is less ageing.

I know that with all you have been going through your hair might not seem a top priority to some people, but it may be the one thing you can have some influence on just now and I know if I look better it makes me feel better and I think many feel the same. We are all rooting for you and are glad that you post rather than keeping things bottled up inside you. xx

For the sake of all Crohn's sufferers out there - I've done a 'selfie'
This was taken in March in Spain, 3 months after the operation.

And now....

Right girl, let's concentrate on your hair as I can imagine how frustrating it must be for you. Try an oil mask (argan oil is supposed to be very good) and get a bit off the length (no crops though).

I've done the oil treatment several times with Vo5 and I've got a bottle of argan oil that I use. Unfortunately, it doesn't seem to have made a blind bit of difference and I'm reluctant to put any chemicals anywhere near it, but I appreciate your advice and I can see where you're coming from, thank you.

We are all rooting for you and are glad that you post rather than keeping things bottled up inside you. xx

Thank you, it means a lot - I never wanted to 'come over' as seeking sympathy, that's why I never got involved with this thread at the beginning, and I know there are people in a worse situation than me, but, I like a mission, whether that is going off to video somewhere for someone, finding information or spreading the word about Crohn's.
You're right about one thing though - losing my hair is the straw that broke the camel's back.
My mood has been a 'down day' today, I'm up and down like a yo- yo these days.

Sanji x

Let's talk hair (or I should say the lack of it) After nearly a month on the Vitamin B complex tablets, my hair seems to have stopped shedding - I mean at the rate it was shedding prior to taking the tablets.
This was the loss after a typical hair brush routine.

Last week, the loss reduced to this below - and for the last few days there's been hardly any loss, and I'm no longer leaving a trail of hairs behind me, although I'm still having to brush a few stragglers off my clothes.



It may be the tablets or it just might be that my hair shedding cycle that has got itself back in sync.
Unfortunately, I've had to stop taking the B complex tablets until I've had a blood test done next week, where they will test my Vitamin D, B12 levels and thyroid levels, and if I took the B complex tablets, the test wouldn't give a true reading of the 'natural' levels.
The fact that they are testing my B12 level because of the hair loss, it makes me think that I did the right thing buying the tablets and taking them.

Some of you may think that I don't appreciate the advice you have given me in this thread - I DO - I go away and think about it - and today I acted on your advice and had another 3 inches cut off my hair. The hairdresser said that whilst it was very thin and fragile, going very short wouldn't help..... so, it's still in the 'bob' style, but a lot shorter, just below my ears.

Maybe when I've got the Crohn's under control, it might start growing thick again - I can only hope !

Sanji x

An update on the Crohn's saga.
What a week!
I went for the MRI scan, where you have to go an hour prior to your appointment time, to drink a solution called Kleen-prep, a litre in total, drinking a glass full every 15 minutes. This solution is a bowel cleanser and gives some 'contrast' for the imaging as it makes its way through your intestines.

I'd read on the various Crohn's forums where people said that this solution was foul and it was difficult to get it all down - After the first glass full, I thought 'what's the fuss about", after the second glass full, I thought " this IS foul tasting" and after the third glass full, I wanted to puke it all back. I couldn't get any more down and it hadn't gone through all my guts, so they stopped the scan and gave me a jug full of ice cold water to drink, to 'push' it through. The water tasted beautiful - no problem with the rest of the procedure.

Then I had to go for the top and bottom camera jobbies - first, I had two days on a special diet with a lot of restricted foods and nothing to eat or drink after 6 pm on the night before the procedures, and then I had 4 litres of the Kleen-prep to drink - 2 litres the night before within the time limit of 2 hours, and 2 litres on the morning of the procedures.... drink one litre within an hour and then start on the second litre, drinking every 15 minutes...and stay very close to a toilet.

OMG, I was dreading it, especially having already tasted it for the scan and how I got through it, I will never know. A good tip I picked up in the Crohn's forum was to cut a lemon into pieces and suck on it immediately after each long gulp - without the lemon and lacing the solution with a bit of lime juice, it would have been impossible to get it down - you'd think in this day and age they could make it more palatable, if they can lace kiddies medicines with nice flavours so that they'll take it, then why not this foul stuff.?
In fact, I haven't read anywhere, where anyone has not said that this stuff is foul and the preparation is worse than the procedures.

I was worried about the gastroscopy, I don't 'do' swallowing tubes, but after he'd eventually found a vein to give me a bit of sedation, it was all over very quickly and I can't remember a thing about it...a lot of worrying over nothing.

Then the bottom camera job - He got so far up and I was wanting to watch this on the screen, and then in the next second I nearly left the bed with the horrendous pain. Pain that surpassed the pain that put me in hospital in the first place - I'm not ashamed to say that I was screaming and begging them to 'do something'.
Well, they thought he'd perforated my bowel, so they very quickly took me to the x-ray department to check - the procedure was abandoned and I was given pethidine. A few hours later the pain slowly ebbed away to a dull ache and I was allowed home later that evening. I've still got the 'ache' in my right upper quadrant.

The doctor decided that he wanted a barium enema done to check for any strictures or narrowing in my large bowel before any attempt was made to do this again...and again I'd have to drink that foul solution. So, the next morning I rang the dedicated Crohn's nurse (and to cut a long story short) she arranged for the enema to be done within the next 2 hours, whilst my large bowel was still empty from all the Kleen-prep stuff - It was a bit of a rush dropping everything and getting to the hospital, but I was very grateful that she arranged this - she found the consultant somewhere in the hospital and after explaining what had happened the day before, he agreed and allowed it to be done at such short notice.

So, what have I found out from all this?
Firstly, I have a small sliding hiatus hernia, which may explain the reason (or part of it) for the heartburn/reflux .
I was watching the screen with the radiographer during the enema, and he couldn't see any strictures in my bowel, however, he said that I do have diverticulitis and he pointed it out on the screen for me - We have to wait for the official reporting after the images have been inspected more closely by a qualified consultant.

My Crohn's is active, my poo test came back to confirm this, so they want another one next week when my toilet habit gets back to 'normal'.
And finally - on the last Thursday of every month, they have a big pow-wow with all the consultants, radiologists, pathologists etc, to discuss certain patients. I have been placed on that list for them to decide where they go from here, so nothing is going to happen until next month.
So, I'm left with active Crohn's, diverticulitis and a sliding hiatus hernia...and still no medicines.
This has to be sorted soon, it's totally unacceptable.

Sanji x