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Another Story...

Hi All! Finally got round to registering after visiting for a while to read the forum. I’ll try to keep my story brief as you will no doubt have read/heard and probably felt the same things before!

About 6 years ago I started getting very mild discomfort in ‘the stomach’. As per usual, you tend to shrug these things off thinking “it’s just a dodgy stomach-it’ll soon go”. This gradually became sorer and more frequent, but like all the other symptoms, if they came overnight you’d be at the Doctors, however when they creep up on you, you tend to just get on with it.

After about a year or so this was becoming more disruptive to my life and the cramp style pain, whilst only lasting for a few minutes, would regularly occur daily and to the extent where you wanted to disappear off to somewhere on your own and grit your teeth till it passed. Doubling over or lying down in weird positions seemed to help or at least make it more manageable-sometimes it seemed to be trapped wind. I also started finding that my appetite was sometimes affected. I could be absolutely starving when sitting down to a meal, but as soon as I had the first mouthful, I wouldn’t have the appetite for any more. Being quite slim this was worrying enough never mind the fact it usually happened in the company of others, so I always felt people were thinking “any wonder he’s so thin?” or that I was anorexic or something!

Around the same time, I found I was requiring fillings in my teeth which was odd, because my diet and mouth care hadn’t altered at all, I hadn’t required any before, yet in the space of 6 months or a year or so, my enamel seemed to be thin. I started using special toothpaste to try and help, and to date am still using it, after getting about 4 fillings I think.

Seeking the advice of the Doctor, I started medication for IBS and found that the conditions improved albeit perhaps for a week or two. As time wore on I started to feel fatigued. Again, something that gradually occurred, so I just assumed it was normal and started worrying that perhaps I was turning into someone lazy. Heading off to Uni and not having the comfort of staying at home, I realised I really needed to start looking about this, so I got new IBS treatment and had a Celiac test which came back negative. This highlighted my very low iron levels, but they were described as ‘low, but at the bottom end of normal’ so nothing happened. The new treatment again worked for a week or so (I assume now that it was confusing my system momentarily?) before I started reverting back to the cramps etc.

A few months later I started producing excess saliva in my mouth one night, and naturally swallowed it, but the next thing I was retching and being sick. This was scary as I’d never experienced anything like this before and in no way felt ill or sick. This occurred a few times and by now I realised that spitting it out continuously was the only answer, that didn’t stop the retching though but sometimes stopped me being sick, though it got to the stage where I would almost have preferred to be sick as at least after it, I would feel half normal!
After having numerous near misses and a few ‘hits’ I started on tablets for excess stomach acid (still on them), which I’m still not sure is helping or not. I still occasionally get it, and I can be months without it and then it’ll rear up and hang around for a day or two on and off. It is so random I can’t tell if it’s lessened, the same or worse!

Around this time (3 years ago), my ankles also started feeling stiff. Usual times were after sleeping at night or sitting or standing for any length of time. I constantly had to rotate them and stretch them (Cue loud cracking style noises!) to try and ‘loosen’ them up and feel normal.

Then one night I started getting very shivery all of a sudden and no matter what hot drinks I took, clothes I wore or if I sat at a radiator, I couldn’t stop shaking. It was the scariest experience by far, uncontrollable and I could feel my heart racing. Either naturally or by myself tensing to try to stop the shaking, I found it left my hip joints and the muscles across my chest sore. I had an ECG done, it was clear, and as it didn’t occur again I assumed it was just a bug or something like that I’d picked up.

About a year ago then I started noticing that there was a slight pain/discomfort in the lower right hand side of my gut at times and occasionally on the left side too. Sometimes when eating, sometimes not and what appeared to help was just holding my palm against it for a while till it passed (strange the way when you hit your leg or arm etc – you naturally hold it to try and ease the pain!).
Then the real embarrassing part began... The noises that my gut would decide to produce (usually only when there was a fully captive audience and the room would be silent!) were gurgles, rumbles, gushes-basically everything you shouldn’t hear. The noise was bad, but worse was the feeling that accompanied it. Hopefully some of you know what I’m talking about (well actually I don’t but you know what I mean!). Not sore as such but extremely weird and uncomfortable, like your insides were vibrating or moving about inside! I frequently wake in the middle of the night to hear this waterfall in action-not sure if it wakes me or if its a coincidence I have wakened.

Iron levels and stores & B12 etc were all being checked every so often and were going down despite vitamin tablets and iron tablets, which whilst worrying, at least reassured me my tiredness was perhaps not just student laziness! I also again suffered from the shivering one night when I woke in bed, it had improved the next morning, came back around midday, improved again and the next day I was sick. Then it finally had went.

Then I started getting really bad wind too, which again when you couldn’t do anything about it meant suffering more pain on and off. I had tried various treatments in this time and with results not showing any blood in my BM’s I faced the prospect I had dreaded from the start.... the camera tests. I met the person who was to carry out both tests and was almost told straightaway that I probably had CD or UC. I had the tests, the barium drink & x-rays and a scan and had a fair idea of what was coming when the operator of the scanner asked if I had Crohns...

This was confirmed only at a couple of months ago (2 strictures in the small intestine – one left and one right – there’s a surprise!) and I began treatment on Asacol. During this time I had the saliva problem a few times and once really bad and was sick but the pain didn’t pass and I had to just go and try and sleep it off for a few hours and thankfully it passed. The Asacol did absolutely nothing for me for whatever reason (passing through undigested), and recently I’ve started Prednisolone and Pentasa and think things are improving slightly... so far anyway. In fact the day the before I went back I got a real bad dose of the shakes again and the subsequent blood tests the next day showed the inflammation levels were greatly increased from my last visit.

I’m getting more used to the fact I have this condition, and in many ways am relieved that I now know what it is and it’s not something worse, however the whole surgery idea absolutely scares me witless never mind the whole idea of bags etc. Though it now leaves me wondering if the enamel problem is from malabsorption.

So I just wondered if anybody else had the ankle or dental problems, perhaps they’re unrelated to Crohns?
 

Astra

Moderator
Hi LFC
and welcome

That's quite a story, sorry you're a Crohnie! Thanks for sharing, and glad you've found us.
hopefully the Pred will kick in soon, I was on in for 4 months, finished last week, but it healed me nicely after a massive flare. I'm on Pentasa too, it's quite mild on it's own tho without a back up med.
Some days I feel that my ankles are going to break! That they won't carry my weight (my Pred weight, I hasten to add! lol)
And I have the teeth problems too, but i have a good dentist who's keeping her eye on it. Just make sure you take calcium with the Pred, or your bones will be next to knacker up!
Any questions, just fire away, lots of support here for you
are you in UK? Where? Liverpool?
lotsa luv
Joan xx
 

Nyx

Moderator
I have the ankle/joint problems as well...and yes, it's related to the Crohn's unfortunately. I don't have the dental problems though.
 

Entchen

Chief Dandelion Picker
Hi -- welcome! -- and yes to the dental problems.

Edited to add: Three fillings in one visit, after years of no cavities, and also moderate enamel damage (so I'm now using $12 toothpaste and complaining about every purchase!).
 
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Hello and welcome!

You sound as though you have had every symptom
of Crohn's & or Colitis.

You'll find lots of answers to your questions here..
and a great amount of support!

Once again...
Welcome~Nancy
 

Crohn's 35

Inactive Account
Hello Liverpool, yes I have joint problems, comes and goes, but I am alot older than you too ;). I have had some dental problems, but mostly sensitive, I use a toothpaste for sensitive teeth and I get mouth sores (cankers all the time). This disease has alot of different side effects and we are all different. You will learn alot on here because everyone shares their stories and sooner or later you can relate. Hang in there, glad you found us!
 
Thanks everyone-you're all very welcoming!

Joan - I'm from Northern Ireland, just I support Liverpool FC, though at the minute thats more depressing than any of the symptoms :lol:

I have recently started taking calcium & vitamin D supplements to about 200% of the RDA, but whilst of course its better late than never, I'm worried its probably a case of 'shutting the stable door after the horse has bolted'.

Nancy - the funny thing is that everywhere i read about either disease, the BIG tell tale sign is having the runs or having nothing happening. I can't say I've suffered either, so in some ways I feel a bit of a fraud! :tongue: I have to say I hope it continues and I have the utmost sympathy for anyone affected that way.

Its reassuring to know that there are others that have had some of the same side effects which I wouldn't straightaway associate with Crohns.
 

Astra

Moderator
Liverpool FC said:
Thanks everyone-you're all very welcoming!

Joan - I'm from Northern Ireland, just I support Liverpool FC, though at the minute thats more depressing than any of the symptoms :lol
ha ha ha ha !!! :ylol2:
 
Hi Liverpool FC,

I can't believe it has taken crohn's to see another "Reds" fan. I have been a true supporter for over 30 years now, and while I currently reside in L.A. I am working hard to get back to the good old U.K. :) As far as teeth problems go my partner has experienced major problems over the last few years. So our advice would be keep in regular contact with your dentist, let them know what you are going through with your crohn's, and hopefully it won't cost a small fortune to keep a winning smile going!. As for ankle pain, that's another yes but right now she has more good days than bad where that is concerned.

You'll find this is a great community of fellow crohnies, no matter what your question or issue shout out. Welcome!

ukstephie the caregiver
colette the crohny - 24 years........and counting :ylol2:
 
Hi there Stephie!

Glad to hear Colette is doing relatively well at present-obviously your care! :) I'm sure you can't wait to come back to the UK from LA to enjoy the fantastic climate we are blessed with! :)
Seeing my dentist soon and will tell him about my diagnosis. Though i'm wondering is there really anything that can be done? I'm currently already on calcium and special toothpaste

Good to know there is another Red on here to commiserate with but hopefully to celebrate with next season-the only way is up eh? :)

I don't know about others, but given the embarrassing symptoms we suffer from, I really found it a bit of a taboo to talk about for years but everyone on here just talks openly and honestly and it sort of 'removes' the embarrassment/shame I previously felt. It really has made me feel more relaxed which is great, because at times you think you're the only person in the world with these bowel problems and that those without it really don't understand. I think its the usual story of 'you look ok' so clearly you must be. So its really good to have such a place to share experiences, help and hopefully a bit of a laugh.
 
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hi Liverpool FC :) i'm not a footie fan, but i live with another dedicated LFC fan here.. he even has the LFC logo and liver bird tattooed on his forearm lol

welcome to the forum! really glad you found us, and i hope the pred and pentasa continue to improve your symptoms, and your quality of life.

i have actually lost some of the enamel off my front teeth in particular, and until i read your thread, i never dreamed there was any connection to Crohn's - so thank you for that info!

i agree with everything you said in your last post about the embarrassment & shame regarding symptoms being completely set aside here... we're all in similar situations, and our emotions & thoughts have probably all touched the same places at one time or another - we know what it's like, whether we're the sufferer or the carer...
 
Hi all just an update, had an obstruction and was in hospital for a few weeks because once it had passed i had a resection and a strictureplasty on another section of small bowel. Unfortunately a leak developed on the strictureplasty bit and i ended up having an ileostomy which is to be reversed in a few weeks.

I'd always been scared rigid of a bag but didn't have much of a choice! And apart from the first day or two i must say i have realised that it isn't as scary or terrible as i'd feared. I'm very lucky in that mine will be reversed soon.

I must mention the fantastic surgeons, doctors and nurses of the NHS who were absolutely great! I can never thank them enough!
 
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