Embarrassing illnesses

SparkyG

AnnieH wrote: »

What's the problem you get with your eyes? How does that manifest itself? I have a problem with one of my eyes, but I didn't relate it to my UC. I get stiff joints, when I'm flaring up, and I feel very tired all the time. Plus I've got a gobful of mouth ulcers

The problem I had with my eyes was sort of blistery things on the conjunctiva. The consultant opthamologist I saw said it was a phlycten, which is a vasculitic lesion in the conjunctiva. I'm quoting directly from his letter here - my memory's not that good!:D

I said in my previous post it was uveitis, it wasn't, but I remember now my GP saying that is serious, and can lead to blindness if not treated. Please get your eyes looked at, especially if they are red and sore.

Best wishes

SparkyG

mollybilly_2

Yeah, i seem to get bout after bout of mouth ulcers, people say im run down, but they just come and go all the time. Ive got no problems with my eyes, thank god, that sounds realy painful. Any ideas on supplements etc, or anything for the tiredness, im knackered all the time, and its hard on the rest of the family. Im forever starting things, and running out of energy half way through, so my house is full of unfinished projects. My OH is great but he works long hours so cant expect him to do more. I take the usual vitamins and iron, but why cant someone invent a miracle cure for tiredness, no side effects, works instantly, well, theyd make a fortune.

livinginhope

AnnieH wrote: »

What's the problem you get with your eyes? How does that manifest itself? I have a problem with one of my eyes, but I didn't relate it to my UC. I get stiff joints, when I'm flaring up, and I feel very tired all the time. Plus I've got a gobful of mouth ulcers

Hi Annie,the main problem with the eyes associated with Crohn's and UC is iritis/uveitis,believe me,you will know if you get it,it is the most painful thing I have ever had,it starts with a sudden sharp pain in the eye,in my case always the left :rolleyes: it then gets much worse and a red ring appears around the iris,at this point immediate medical attention is needed,I usually go to the emergency GP who then sends me straight to casualty,they give you steroid drops for a few weeks (Maxidex) which normally sorts it out.I have suffered with this 9 times in the last 3 years,but there is no pattern with the flare up of my Crohn's.If you are unlucky enough to get it,you need to see a doctor straight away as if left it can affect your sight.
Just to add,I have noticed an increase in 'floaters' just before a flare up of iritis,does this happen to anyone else?
LIH

AnnieH

The problem I have with my eye (right) is that I constantly feel as though i have a huge piece if grit in it right in the middle of my eyeball although there is nothing there. It's very painful and makes me all teary eyed. It's worse first thing in the morning, and comes and goes. it's Ok at the moment though now I think about it.

Little_Miss_Saver

Hi again

Can't believe how many of you have "come out" since I last posted !!!

Anyway I went to hospital the other day for my usual check up, haven't been well of late (bloating, cramps and vomiting). They have told me that I'm going to need further surgery as the narrowing in my bowel seems to have got "tighter". They told me after my last op that the next op would mean a colostomy bag (which at 31 I'm not relishing the idea)

I'm gutted, I was given a 3 month course of steriods to try and "open" it, then if my symptoms improve they might try to dilate it via a colonoscopy. In the meantime they've sent me for every test thats going to "locate" the narrowing. :eek: I so hate these tests especially the laxative drinks you have to take and the barium as well. Wish there was better ways to do them!!

I've had 2 resections in the past and a colonoscopy 15months ago showed the narrowing at the site of a previous op but as the 2 resections were in seperate places in my large bowel they don't know which one or if both are causing my problems (if that makes sense )

Trying to come to terms with my "news". I'm back at the hospital in 4 weeks so hopefully I will have a clearer head to discuss things properly.

LMS xx

livinginhope

Hi LMS
Try not to worry,it will only make things worse.If it helps,I was told just before my last ressection (no.4 :eek: ) that I would almost definately end up with a bag,but I didn't :j ,they said they cannot be certain until they open you up,so you might not end up with one and even if you do,it will probably not be permanent :grouphug: to you hun,I know just how you're feeling right now.
Regarding the widening of the bowel with the colonoscopy,this has never worked for me,but it obviously does for some,or they wouldn't do it
A little tip for taking the Picolax,have the Picolax in one glass and lemonade in another,straw in each and suck together,tastes much better and doesn't make you 'gag' my hospital now recommend this after watching me doing it so many times
Best of luck for your appointment,I hope all goes well for you,in the meantime,I take it you are on a low residue diet?
I have an apointment in 2 weeks time,fingers crossed :rolleyes:
LIH

Little_Miss_Saver

Hi LIH

Thanks for your post, it was just what i needed to put everything into perspective and there is hope then that I might not get a bag!!.

I'm trying to focus on everyday life at the moment and push this to the back of my mind. I keep telling myself not to worry about "it" until the results of the tests are back and they have a clearer picture of whats going on.

Yes I'm on the low residue diet at the moment (I do have my lapses though like I've just eaten a choccy bar as I've had a stressful day at work!!) Its hard to be creative with the little "choice" that you have. And especially in this weather as I crave salads. I'm having fruit but I'm making smoothies instead. I find if I blend my food it helps as well.

What's it like to have the bowel dilated? I find colonoscopys extremely painful as it is and have to have 2 syringe full of both pain killers and sedation to keep me calm as well as nurses to hold me down :rotfl:

I'll have to try that with the picolax, I can't stand the stuff and the "fizzy feeling in your stomach afterwards makes me feel nauseous (sp?).

Anyway, thanks again for your post its been a great source of comfort to me and best of luck to you with your appointment in a few weeks.

LMS xx

livinginhope

Hi again LMS

I too find colonoscopys very painful,not to mention very embarassing but then the sedation never works for me and I'm totally awake throughout the whole procedure :eek: it's actually quite interesting looking at your inners on a screen :rotfl: ,the dilation doesn't really feel any different to a normal colonoscopy,I only knew they were trying because I was watching,but my bowel was so badly inflamed that they gave up and whipped it out the following day :rolleyes: I think they try it as a last resort before surgery.
Regarding to low residue diet,if like me,you love fruit,have you tried fruit compote from Lidls? this you can eat without fear of it blocking the narrowing,also stewed apple fool is easily tolerated and cheap too
Really hope things go ok for you,you can PM me anytime if you need any help or support.
LIH

Little_Miss_Saver

Thanks LIH, I've just sent you a PM

LMS xx

atlantis187

Great to listen to people with different problems. I would like to share my experiance. I suffer from Pilonidal sinus disease this affect the top part of the backside. I've has 2 bascoms operation and 2 incision & drainage. I just returned to work this week after being off for 3 months and I still dont feel 100%. The hardest part is trying to explain to work about this problem because they dont really understand it and think its something am just making up.
My wife also suffers from Ulcerative colitis shes had this for the last 15years thankfully shes got this under control.

Anyway sorry to babblin on. Would be great to hear from other people suffering from this and how they're coping.