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Crohn's Disease Forum

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Nov 14, 2011
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Just thouight I would let yall know how its going.
I am still in hospital.
The rectal stump issue seems to be going better since the introduction od flagyll/metronizadole suppositories. Only 1 episode of bad bleeding in 24 hours. Really pleased with that result.

the reason for my continued stay is all down to the swallowing problem. Am only able to get liquids down so have lost a fair bit of weight. Nearlty half a stone in a week.
I was due to have a scope down on monday but aparantly if on warfarin yoyu have to have an inr of 2 or less in case of the need for biopsies. My inr had not been checked for 5 days prior and so came back as 3.4. Not good. So no scope for monday. Having another inr today, after 2 days of no warfarin to hope it has come down enough.
I am hallf convinced I have Crohns. A few things have been pointing me this waay but they could also be somethng else. I tell myself I have Croihns so anything else will be a bonus! Not sure how that will work out but will, as always, let you know.
if anyone else has got Crohns in their throat/mouth canbn you tell me what symptoms you had/have?

am off for my early braekfast of a fresubin and a bucket of tea.
more later
squishy hugss and lots of love to all.
 
I am so glad the rectal bleeding is slowing down. Now, to get the throat issues sorted! And yes, it really does seem like crohns.

Hope they get you on the mend asap!!!!!
 
Hope they get you sorted soon, you can get home and get a good feed into you! I'll send you a big pot of Irish stew! Keep fighting you will get there. Take care and keep us posted.
 
Thanks guys.
just had a funny turn after the flagyll.
More later.
stew sounds fab ryan xxxxxxx
 
Hi Shazz,
Although a pain to be in at least they are sorting you now. Hopefully they can get your INR within range by monday. They have a few days to get there.

I don't have crohn's on the oesophagus but do in the mouth/stomach and duodenum. Are you finding it painful to swallow or more that your can't swallow or things get stuck when you swallow. My symptoms (thankfully stomach and duodenal ulcers settled at moment just small bowel being a git) were pain. As soon as I ate and also early hours of morning in upper mid abdo, pain in my mouth where the ulcers were.

Have they said what they think may be the cause of the swalowing- I thought they had looked into it before but prob wrong!
 
Thanks lmh.
they looked into it so far as I oppened my mouth and they said it was oral thrush but it was not.
I have a coating on my tongue and itg hurts when I swallow aand also food and tablets get stuck. I gat stomach and throat pain a lot and gthr only thing that helps is oramorph.
have just found out I am having the scope and swallow test but dont know whatn one will bww first.
the only problem I they wont be able to take biopsies on the scope due to the warfarin levels but at least they will be able to have a look.
will let you know how I get on later.
xxxxxxx
 
Hi shazz! I'm glad that they are trying to get you sorted out.

When I first was diagnosed, I had Crohn's in my mouth, all the way through the rectum. I remember I had ulcers in my mouth that were really painful, and then when I would try to swallow food it hurt so so bad. It was almost like a burning/stabbing pain. It's been a long time since I had that, so I don't really remember what they did for it. I know i had some kind of lozenges that I had that would help with some of the mouth pain.

I hope it's an easier fix than having Crohn's, but if you do have it, then at least they will be finally able to treat it.
 
Thank you Manzy.
if it is at least I know I will be in wonderful company on here!!!
I just want to get sortred. The thing hat worried me now is if it is Crohns will they still let me have my j-pouch?
Will cross that bridge when it comes to it
xxxx
 
If it is Crohn's then they really should not do a J-pouch... I hope it's not Crohn's!!!!! Fingers crossed for you shazz. I'm so glad you are getting some attention finally!
 
I don't know about the J-pouch :( That would suck, especially if you were counting on having one.

You hang in there! thinking about you and hoping you better health, always!
 
Hey Shazz,
Life is not giving you a break lately eh..! You are incredibly strong, stay that way and once they get the proper diagnosis, you will be good to get the best treatments to keep all that under control.
For what it is of crohn in the mouth, I had it, but not in the oesophagus. I had the biggest ulcers ever both on my tongue and usually between my cheek and gum close to an inch long. It would make eating such a difficult thing to do. Sometime I would use the stuff you put on baby's gum I can't recall the name but it's pretty much benzocain dental gel... Nothing miraculous though and strictly local...

It's odd for the coating aspect and the difficulty swallowing, it does sound like trush. It not being... I would not know what other manifestation that can be. I might look it up later on and if I find something I'll let you know.

As far as the J-Pouch go. As you said it will be the time to cross the bridge once you get there. But as far as I know, surgeon are not particularly thrilled to do that procedure for crohnies as it involves a lot of risk of having pouchitis and complication due to the surgery itself. My surgeon would maybe have allowed direct reanastomosis without J-pouch if I would really have wanted it but I know that he would not have proceed to the J-pouch construction due to the risk. No need to rush your mind with that as of yet though.

I hope they manage sorting everything out quickly Shazz! Take care!
 
Well
thinking my day couldnt get any worse it then did.
I went for the swallow test and they saaid becaue I wa havin the scope to have that first.
So off I go to endoscopy and they say cant do scope caue my inr is way to high. I do believe I said that to the consultant this morning.
so I come bck to the ward having been out ffor 3 hours and not having had nothing done.

I am now 1st in the queue for the barium swallow test tomorrow but I am staying here until my inr comes down eneough for my scope.
am completely and thoroughly pissed off but have had a few tears and am back in the game again.
at least I can have a fresubin drink and a cup of tea.
 
Thanks hun. Had a pureeed meal tonight. Wasnt bad. They have said they will send me home on a liquid diet but not sure what kind yet. Will speak to the diet person tomorrow sometime. Xxxxxxx
 
Thats what I was thinking. I am all for losing some more weight but not like this. Am off to bed in a bit. Hope to get some rest at least. Xxxxxxx
 
You need to come to the Texas for a vacation and I can get you hooked up with some brilliant doctors. ;)

My wish for you at this point is: May you sleep peacefully tonight and forget about everything for a few hours....
 
Not a good nights sleep. Lots of pain and urging. No barium swallow this morning. Waiting to hear from endoscopy about my scope. Will let you know when I hear xxxxxxx
 
Another horrendous night. Lots of pain, urging and no sleep.

Am finally home though!!
They have now decided not to do the scope because of the risk of bleeding while on warfarin. I will now hhave tthe barium swallow test next week aand see what this shows.
Am so tired can't even see straight so going to bed.
Thank you for all yyour support these last 10 days.
Xxxxxxxxxxxxx
 
Hi Shazz
So sorry to hear of all the difficulties you are going through and really hope things get better soon
Hugs and best wishes
Trysha
 
Thanks all.

Got into bed at 7.40pm. Fell asleep. Woke up at 3.30 feeling sick so had a cyclizine tablet and some water. Next woke up at 8.30am!
Never slept so much.
Still feel really drained and tired though. Going to get as much fluid in me as I can today because i had next to nothing yesterday.
Thought about having a biscuit but my stomach churns at the tthought of food so mmight try later. Plus I don't have the energy to fight to get the food down and my tablets as well.
Will update more during the day
Xxxxxxxxxxxxx
 
Slept all morning and half of the afternoon.
Still very tired and lethargic. Dizzy when I stand.
No strength or energy.
Had some ttomato soup for lunch, really enjoyed that.
Getting in as much fluids as I can but its not easy being so tired and ssleepy.
 
Feel so sick this afternoon.
Just had another anti sickness tablet.
I can see me going back into hospital for dehydration.
Need to go docs monday to get more fresubin. Will get thrm to check me over while I am there just to be sure.
Lying on the sofa with my sick bowl and my bottle of water!
My life is so rock and roll
 
That so made me chuckle toothy!
Not feeling so sick now and have had some more fluids. Mostly lactofree milk.
Going to try a packet of wotsits crisps.
Xxx
 
Sorry I ate the 2 packets I had here!
Will get some more tomorrow and ssend you some.
Head really hurting so just had some codeine and aanother anti sickness tablet and am off to bbed again!
Still can't believe how much I am sleeping.
 
Hey Shazz,
I haven't been posting, but I've been reading. I am so glad that you keep updating us. I am glad to hear that you have made it home again. I truly hope that the universe shakes itself and clears a path for you to get the testing, answers and treatment that you need so that you can begin to heal completely. You are such a strong person and I am amazed at how you continue to handle your 'difficulties' by keeping your sense of humour intact. You are an inspiration to us all. Be well.
 
Thank you happy.
I do try to see the lighter side of things as it does help me cope.
Went to sainsburys this morning and bought a load of lactose free foods. Got some nice yogurts and some pudding things. Also found some custard!
Need to check every label now though cause lactose is in everything!
Still really tired but have managed to get some food down.
 
Had a horrid night.
Hot and cold sweats and shivers. Could not get to sleep for love nor money!
Felt sick all night even though i took 2 different anti sickness tablets.
Can't concentrate on anything, even simple things today.
Got an appointment with my doc this morning so will let him know what's going on.
More later Xxxxxxxxxxxxx

Also found out that wotsits have got lactic acid in them so can't eat them now! :ybatty:
 
Wow Shazz - you're a resilient bugger!
You are such a fighter.
Thanks for continuing to inspire me with your journey.
 
Hi Shazz
Hope the doctor visit was helpful and went well.
You make me nostalgic for Sainsbury's---they don't exist here (Canada)
Feel better soon
Hugs
Trysha
 
Well got my inr done, 2.2, got some more fresubin drinks on prescription but apart from that nada!

Need to see my usual gp, can't get in for a month!

Grrrrrrrrrrrrr

Tomato soup has milk and lactose in it. So do most crisps, bread and other food.

On the plus side I have found ice cream, mouse type desserts and yogurts. Hazelnut milk is nice but only having a little bit of that due to the nut thing.
Also found some crisps I can eat. Bacon flavored ones and salt and vinegar ones as well.
Some salt and vinegar crisps do have lactic acid in the flaovouring so need to watch out for that.
Also got some philly type soft cheese for when i can eat again.
Made myself a rice pudding with my lactofree milk and that was very nice. Something hot for a change!
Xxxxxxxxxxxxx
 
You were replying while I was typing! rrrrgh, hate it when that happens!

Honey, its got to get better. Just keep pushing!

I have an ass whooping I've been saving up for someone,would you like to borrow it?
 
Drs, lawyers and indian chiefs? I have lots of whoop ass saved up, enough for all! (I have an inner savage)
 
Am back in hospital again!!!!!
Struggled to get my fresubin down this morning and the pain I had after was just horrendous so here I am again.

good news iss they have arranged for me to have a sscope tomorrow so might get ssome answers at last.

just managed to get a cup of tea down before nil by mouth time but half went straight to my bag and the other half came back up.
oh well enjoyed it the first time.

more tomorrow
xxxxxxxxxxxxx
 
asscope? hahaha!

I know that's not what you meant.

Goodness, girlie! What a time you are having. My heart goes out to you!!!
 
Lol toothy.

its cause I am on my phone!

just been informed the docs today have not written up anything about me. So had to wait ages for pain relief. Am in bed now just having had some anti sickness stuff through the iv. Wow its good stuff! Going to try to get some rest as my fluids run out at 4am and will need to be changed! At least I am getting fluids. I am still kind of smiling!
 
Fingers and puppy paws crossed the scope gives you the answers. And finally the assistance to get things under control!
 
Well just seen the consultant and she has informed me that all my bloods have come back normal so after my scope, which will be normal, I will be discharged home.
No one seems to be concerned that I still cant eat and waas sick last night. They just go by the blood results.
Half hoping that they find something and half hoping they dont. Want to be able to eat again.
Just waiting to go for my scope.
More later xxxxxxxx
 
Good luck and lets hope they can work out whats making you sick and have difficulty swallowing. Did you have the barium swallow?
 
I have to say it seems strange they are not bothered about your intake. Have they completed a MUST form...should be done for all new admissions and is a risk of malnutrition score - you would probably score above normal so dietetics should be involved.
Have you seen a dietician? My gastro consultant is obsessed with what I do and don't eat and if I am sick- most gastroenterologists are...or are you still under the surgeons?
Why don't you request a dietician referral?
 
They have cancelled the ******* scope again!
inr too high.
Am so pissed off right now and in so much pain.
cant even type
 
Flippin people can't even get the basics of your INR right...it's not rocket science to dose adjust for lower inr !
Have you an IBD nurse and has he/she been to see you. It might be worth having a chat and going through your issues with her...she can then be your advocate. When I was under the surgeons (i ended up under the vascular surgeons as it was an emergency procedure) my IBD nurses and the dietician used to regularly take up my cause regarding diet and meds with the vascular surgeons and also pass the info to the gastro consultant. Its worth a try if your IBD nurses are around. Just having someone to vent to will probably help you.
 
Right latest now is my inr has been done and is 1.9.
this is now fine for scope but not sure of available appiontments.
have to wait and see now if they can fit me in today or if I have to wait till friday.
dont know if I am coming or going!
have asked the ward to bleep my ibd nurse but she has not got back to them yet.
 
Oh Goodness!! Shazz, what in the hell is going on in that hospital?? That's just crazy to me that they keep putting you through the ringer.

i hope you get to have your scope today. Thinking of you!
 
Had scope done and all is normal.
They took biopsies but don't expect anything to come back.
I am back home now and in bed again. So tired and washed out.
Got a plan of action to follow that me and hubby have come up wwith. Have had no offer of help from the hospital in regards to what to eat, when to try new foods and so on.
I kind of know what i am doing so will just get on with it.
The consultant I saw said it could be shock of the surgery as that sometimes happens. I will keep a close eye on things and see my gp if i am concerned.
I can also ask to see a dietitian via my gp if i feel the need.
To be honest I have had enough 'help' from the medical profession to last me a while. So will do what I do best and deal with it myself!
Going to have a fresubin and then go to bed.
Xxxxxxxxxxxxx
 
Hooray on finally getting the scope!! I'm glad nothing looked out of line, but that doesn't help you at all today. I'm so sorry to hear this....
 
I'm glad that you got the scope and are back home!

Are you still taking the prednisone?

get lots and lots of rest!!
 
I am certainly glad you had the scope done at long last. If they said they saw nothing, in a way that can be a good thing. But I know that doesnt help you to eat or swallow. How about juicing? I know fluids can be tough for you as well, but at least you could get some nutrients. Did they not consider NT?

I'm curious what the biopsies come back at. And, now are they going to assign you back with a GI? How about the IBD nurse? Can she help with that?

I hope you get some rest tonight sweet Shazz.
 
They have just said to keep up the fluids and to try to introduce foods as and when i can tolerate them.
I am physically and mentally exhausted so will go to sleep in a bit and think about it all again tomorrow.
Xxxxxxxxxxxxx
 
Have slept all day and still feel tired.
Had as much fluids as I can and have even managed to get some lactofree custard down. That was nice. Something hot for a change!
Still very shaky and unsteady on my feet and very dizzy.
Don't really know where to go from here but will take it one day at a time.
Still finding it hard to swallow and still in a lot of pain.
 
You sound very dehydrated to me, and no wonder. With an ileo in this heat, and not able to swallow much!
 
Yeah I think i am but my 'bloods' have all come back to say my body is coping.
But I want to know at what cost is my body coping now? What other problems am I going to end up with in say 6 months time!
 
Just to top my evening off just had a big pr bleed!
I was thinking I has solved the rectal stump issue but apparantly not.
So feeling crap on top of everything else.
Am so fed up with it.
I must have been someone really naughty in a former life or something.
 
Clearly Shazz, you must have been a pirate! Seriously, I think you need a lot more help than you are getting. And you need a GI on stand by!
 
Misty I was thinking more of Atilla the Hun!

Just had to rush to the loo again. Nothing but blood.
When they look though there is nothing there and they think I am making it up!
Really don't feel well though.
I am under a surgeon and a gi but they have agreed there is nothing more to be done.
They still refuse to do my op till at least August because of the warfarin but I cannot go on loosing blood like this.
If my body would actually show me to be anemic they might do something but it doesn't. My body does cope really well with what's happening. I don't want to get to the stage where it isn't coping though. Dread to think what state I will be in by then.
 
Horrendous night again.
Shivery even though it was really hot and just couldn't settle.
Head is pounding this morning, stomach pain is horrid.
No more blood yet though.
Very achy this morning
 
With the rough deal I am getting at the moment I am thinking I was both!

Have figured out why the bleeding started again. I have reduced the Prednisolone to 20mg so have to go back up to 25mg dose from tomorrow.
Not heard back from my gp, gi or IBD nurse so self mediating. Besides its not bloody rocket science is it!
Had a clear out of all my old meds that i no longer use today and they have gone to the pharmacy for safe disposal. Made me feels lots better. No more foam butt facials for me!!

On a down note I put my prescription in on Monday for my next lot of fresubin drinks. Went to pick them up today as i had got down to my last one and they are out of stock and can't get them! The company sent something else down, free of charge, so have had them. Lemon high calorie shots! Not bad but very lemony. Calories is calories to me though and they were free!
So need to phone the pharmacy in a bit to see if they have been able to get my fresubins. Pain in the ass or what?!
Also bought some dioralyte sachets and have had one of those to try to keep my fluids up.
 
I had the same problem, so glad they got you something!

I am sorry it's lemon though (guess they thought since it was hot..?)
 
@toothy - yes we normally are only eating and looking for stuff low in calories and fat free! Quite nice not to hhave to worry about how many I am consuming.

@crossstitchgal - fresubin drinks are energy and calorie replacement drinks. They are normally used if you loose too much weight because of being unable to eat for medical reasons. The normal ones you can have up to 7 a day to help replace lost calories. They come in a range of flavors. The ones i have had are -
Coffee, blackcurrant, vanilla, banana, tropical fruits.
They are 200ml and have 300 calories plus all the vitamins and minerals.
The one I had today was a concentrated shot. 30ml and had 150 calories. You are only allowed 3-4 a day. Not sure of the flavors available. I was given a lemon one.
 
Ah...makes more sense. We've got different amounts of calories of the boost and ensure type stuff. I've been getting the higher calorie ones since my weight has dropped so low.
 
Good golly miss molly! What in heavens name are they doing to you shazz! That hospital sounds like they couldn't organise a root in a brothel! :yfaint:

Sending you mega loads of love, luck and well wishes on getting some solid answers and lasting relief!

Thinking of you hun and above all else :hang:

Dusty. :Karl:
 
Thanks Dusty.
Finally got my fresubin today so that's one thing less.
Also picked up some soup that I can blitz in the blender.
Had some rice pudding I made yesterday but that really hurt all night so will stick to more liquid stuff for a few more days then try again next week.
Bad night again last night and didn't really sleep again cause of the pain.
This morning tthe pain is more around my stoma which it hasnt been before. Also most of my right side really hurts like i hhave got a stitch. Going to have a nice sshower later and change my bag so will have a good look at Ozzie to make sure all is ok with him.
Going to lay down on the sofa and do nothing else for a few hours.
Xxxxxxxxxxxxx
 
HUGE HUGS for you Shazz! I have nothing to add to what others have said in support of you so I just send cyber hugs :) xoxo
 
I can understand that.. It wouldn't hurt to only have the high cal drinks for a few days would it?
 
Will give it a go. Got lots today and i can get some more on prescription monday.
Just makes me feel like no energy and a bit crappy.
 
Sorry to hear you're not doing well, Shazz.

Just for your info though, when you're back up to eating food again, sainsbury's used to do these diet books listing everything they sold that was lactose free. At least they did when I was on an egg and milk free diet years ago. Was very helpful!

Hope you feel better soon!!
 
Just wanted to say hi Shazz. I agree, maybe liquid only would be best for you right now. Just broths and your RX drink. Every bloomin time I flare, I now know I must 'liquid only' it until I get settled down. It doesnt do any harm for a short time, and it certainly helps with the pain. Thats why I invested in a juicer as well. For the first time in years....I could eat FRUIT!!! And VEG!!!! Come up and stay here...I'll juice you! (the food for you I mean)
 
Misty you can juice me any way you like!!:ylol:

They are still saying I have not got Crohns but if when I eat it hurts like this what else could it be. I don't want Crohns, dont get me wrong, I just want answers. :ybatty:

How do you do your broths Misty? Recipe please. I have a slow cooker i use a lot. Xxxxxxxxxxxxx
 
I didnt home make my broths in the slow cooker...but, I think allrecipes.com might have some info on that? I love that site!

I got store bought broths. By the time I'm that bad, damned if I can cook a thing!
 
Will have a look now.
Should be easy enough to adjust for lactose as well.
It was bad enough being on a low res diet without then half the food being not friendly due to having lactose or lactic bloody acid in it!
I mean COME ON!!!!!!!!!
Rant over.
Going in search of broth recipes

SORTED!!!!!
Chuck some chicken in my slow cooker with some stock, carrots, celery(not sure of) and onion(again)not sure of).
Cook for a few hours. Remove all food and drink/consume the remaining liquid. Might even put some sweet potato in as well.
Sorted!
Thanks Misty Xxxxxxxxxx
 
Sorry to hear you had a bad night again Shazz:( I didn't sleep to well either. Was achy and wide awake most of the night. Gotta be bright eyed and cheery for the customers at 5pm pacific time though. Yippee!

I noticed that when I was preparing for my pill cam the broth that seemed to do me the best was vegetable broth. Not sure why. Hopefully today will be better for you. Xxxxxxxxx
 
Bad day again today hun I am afraid.
Had pureed soup for lunch and that was 7 hours ago and I am till in pain.
I just don't understand it.

Sorry you had a bad night as well. Fingers crossed we both get a better night tonight.
Xxxxxxxxxxxxx
 
Have tried giving myself a real good talking to but I just don't listen!

Take care as well aand sending lots of hugs. :hug::hug::hug:
 
Chicken broth is on. Got chicken stock, chicken breast, sweet potato, carrots and a bit of cauliflower. I thought what I could do is pure the remaining food once strained and freeze it for use later as a thick soup.
Will let you know how it goes.

Got a lot of pain still and it kills to move. Still really tired and dizzy. Lost more weight this week as well. About half a kilo. It is slowing down but don't want to loose too much more.
Going for a lay down on the sofa.
Xxxxxxxxxxxxx
 
Glad to hear that you're able to get something healthy into your stomach:) Still sad that you're in so much pain along with dizziness. Hopefully things will calm down for you soon. Have a good sleep:) Xxxxxxxxxxxx
 
Broth still cooking but smells delicious!
Just put a vegetable stock cube in and half a teaspoon of marmite! Mmmmmmmmm
Half an hour more and i will strain the solids away and have a small amount of broth.
Going to pure the solids with a bit of broth and freeze for future use.
Have rested but not slept. Hating the amount of pain I am in. Codiene and paracetamol is all i have got and its not touching it
 
Broth was very nice but still caused pain.
Not sure what to do now. Should i try some more later or leave it or what to do?!
Its so frustrating!
 

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