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Eye pain and blurred vision

On sunday night I noticed my eye was blurry and kind of goopy. It started to hurt and figured I had pink eye. So I was prepared to call my eye doc in the morning. But I was also prepared to have the crazy gunked eye that comes with pink eye. When I woke up my eye felt fine so I chalked it up to allergies.

Last night I felt more pain but less goop. In fact it feels super dry now and my vision is still blurry. I am pretty familiar with eye pain and being at the eye doctor. I'm spectacularly near sighted and have had a number of infections as well as a case of optic neuritis.

What kind of eye problems are associated with IBD? More specifically, what do these problems present as? Has anyone also experienced pain like this?
 
Hi,

I have keratokonjunctivitis sicca and my problems are dry, itchy eyes, mucus (not bacterial, but clear to white mucus strands blurring my vision). If I ever rub my eyes when they are itchy they start to run like mad, and they are quite red. Also the insides of my eyelids are very red. Seems like allergy but it is autoimmune. In my case they don't know if it is linked to the Crohn's or not, but my problems started at the same time as I got Crohn's and it seems like I have good and bad periods just like with my Crohn's...

Is your pain in just one eye? That indicates that it is not Crohn's related, I would say. Usually you would get it in both eyes. I'm nearsighted too, by the way. :)
 
Thanks for the information. At first it was just one eye, but now it is both. It goes away during the day for the most part, but during the evening it gets worse. It feels like I have a bump or something there that is causing the dryness and the pain. I have an appointment tomorrow with GP, maybe he can give me some advice.

I don't see any bumbs, can't feel anything when I rub my upper eyelids. I once had a bump develop because of my contacts. The shape of my cornea changes so often that I can't wear contacts without getting an infection, because they don't fit my eye. At least that's what my eye doc said at the time.

I've had a lot of eye problems. I'm so nearsighted that every time I order glasses, they make fun of me. I always thought it was really insensitive. My eye rx is -9/-9.5, and I'm only 23! I always get my glasses with the extra thin lenses and they still look like coke bottle glasses. I cannot see clearly more than 4 inches from my face.
My optic neuritis left me color blind in one eye too.

It kind of sounds like what happens with you. I try not to rub my eyes, but they bug especially when I'm trying to sleep.
 
Ach, same here... Evenings are worse for some reason. Must be so frustrating to be that nearsighted and not be able to wear contacts! :( I'm 'only'-6,5, and I also get the thinnest lenses. So conscious about the lenses being thick, and I don't like wearing glasses. But I suppose it's better than going blind. We want to be nice to our eyes. Hope you feel better soon, maybe som eye drops will help? :)
 
I've had glasses since I was 6 years old. I wore contacts for about 7 years when I was old enough, but it just wasn't worth it when I hat two eye infections in less than 3 months. I've gotten used to glasses now and they make me look older, which is a plus for me, since I get carded at movie theaters!

I tried some eye drops once, and it really didn't help. I notice that if I flush my eyes before I go to bed, it's a bit less irritating. Thanks again Sophia!

May I ask something? When you aren't wearing lenses, especially at night, how does light appear to you? For some reason, since I was little light appears as giant bursts of light, the brighter the light, the bigger the burst. It's actually really pretty, but then if I focus on a light the light burst starts to move, I've always thought it look like cells under a microscope. I thought it was normal, but I haven't met anyone that has the same experience.
 
Yes, I have that. Think it's normal, actually. :) The eye is trying to find the focus (I think of it almost as a zoom on a camera lens) and because we are nearsighted, it can't find the proper focus and hence the blurry and moving focus. :) I've also had glasses since I was six. Lol. Contacts since I was twelve and then atm I'm mostly wearing glasses. I don't like looking older, though. ;)
 
I'm both far sighted and near sighted. I can't read a thing without my glasses. Light hursts my eyes. I have polorized glasses becasue of the light issues. I have a progressive lense pair for general wearing. I have reading glasses for reading and computer work or any other close up work. Origanlly my eye doc had me get the second pair of glasses because I home school. Gotta read lots of small print to grade those papers. I'm so glad my doc suggested it. If I use my regular glasses and use the reading part of them for longer than reading the lable on a can or something, I get nasy headaches and eye pain to the point that I get sick. My right eye is so much worse off than my left eye.

I have very, very, very, dry eyes. Just had plugs put in to see if that helps along with using Restatis, Dry Eye gel @ night and moisturizing saline drops throughtout the day. My eye doc at Johns Hopkins Wilmar Eye Institute said that my yes are so dry that is dangerous. Dry eyes can damage the cornea as well as the optic nerve. I count my self lucky. Kock on wood.
 
Do any of you get the stabbing pain from the inside of the eye? That and my left eye actually broke a blood vessel from it. It finally cleared up. But, my eyes feel dry sometimes and other times water for nothing!
 
I started having eye symptoms about 8 months ago, usually in the lower eyelid. The lower eyelid swells and becomes irritated, and at night it becomes so dry that it hurts to try to open my eyes in the morning (and I get lots of hard dry particles in the morning). Lower eyelid swells so much that it blocks a large part of my vision. I have been cycling through various stages and levels of this for about 8 months. It is somewhat like styes I used to get once every few years, but different in some ways (particularly in that it never seems to go away). Went to a doc in the box at first, then my GP, then an eye doctor, then brought it up to my gastrodoc at an appointment. Had antibiotic shots, pills, eye drops and creams, together with hot compresses and baby shampoo, without much success. My gastrodoc then told me it could be related to my Crohn's and recommended another eye doctor. The last eye doc gave me a prescription that was a special combination antibiotic and anti-inflammation (I cannot recall offhand) and it almost cleared up for the first time in 8 months but the prescription has bad side effects for the stomach so it is hard to keep taking regularly. Not sure if any of this sounds familiar to you, but in any event I would bring it up to yoru gastro and if you see an eye doctor make sure you bring up your Crohn's or IBD as there is some literature out there that ties eye trouble to these diseases. Hope you find some relief, I know it can be difficult to deal with constant eye problems.
 
I started having eye symptoms about 8 months ago, usually in the lower eyelid. The lower eyelid swells and becomes irritated, and at night it becomes so dry that it hurts to try to open my eyes in the morning (and I get lots of hard dry particles in the morning). Lower eyelid swells so much that it blocks a large part of my vision. I have been cycling through various stages and levels of this for about 8 months. It is somewhat like styes I used to get once every few years, but different in some ways (particularly in that it never seems to go away). Went to a doc in the box at first, then my GP, then an eye doctor, then brought it up to my gastrodoc at an appointment. Had antibiotic shots, pills, eye drops and creams, together with hot compresses and baby shampoo, without much success. My gastrodoc then told me it could be related to my Crohn's and recommended another eye doctor. The last eye doc gave me a prescription that was a special combination antibiotic and anti-inflammation (I cannot recall offhand) and it almost cleared up for the first time in 8 months but the prescription has bad side effects for the stomach so it is hard to keep taking regularly. Not sure if any of this sounds familiar to you, but in any event I would bring it up to yoru gastro and if you see an eye doctor make sure you bring up your Crohn's or IBD as there is some literature out there that ties eye trouble to these diseases. Hope you find some relief, I know it can be difficult to deal with constant eye problems.
Thankyou for the info. I know it was from crohn's, just like the cough I never had before. My eyes have been better lately, but if it starts up again I will go to the eye Dr.'s like you said. It was awful! But yours sounded much worse!!!
 
yep! get the stabbing eye pain. Hurts like the dickens. Teresa and Max, has anyone checked out your oil duct glands to your eyes? Mine produce oil that is the consistency of toothpaste. I was told to take fish oil. Fish oil gel tabs too big for me to swallow with all the throat inflammation and crud. It was suggested to me to take Krill oil as they are smaller gel tabs. Doc said OK. Another ophthalmologist recommended ...


Will finish this later. Gotta run hubby to the docs.

Back for a short visit while hubby drives....

My daughters ophthalmologist recommended HydroEye SoftGels www.sciencebasedhealth.com as this is what works for her.

Just taking a stab in the dark. Snort, snicker, snicker...
 
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Yes, I drink water all day long and I drink one glass of juice a day and one glass of almond milk. Plenty of fluids. Too much probably. I am up all night running to the b.room!
 

annawato

Moderator
Staff member
Crohn's can affect the eyes in lots of ways. Uveitis is inflammation of the middle layer of the eye and causes pain, blurry vision, redness and light sensitivity. Episcleritis affects the white part and mainly causes redness but also pain/tenderness. Keratoconjunctivitis sicca causes burning and itching and is caused by a lack of vitamin A. The Retina and Optic nerve can also be inflamed by crohn's disease. Any of these need to be diagnosed by an eye doctor so you're on the right track in getting it checked up.
I've had the odd eye problem, not sure if crohn's related or not - the main problem now is majorly deteriorating (sp?) sight which is probably due to my age (50) but I'm also wondering if infliximab is affecting it. After my last but one infusion I had very blurry eyesight (and headache) for several hours. I'm a bit worried that the infliximab is actually affecting the optic nerve. Has anyone else noticed blurring after an infliximab infusion?
 
I had to go to local eye hospital last night,had a film blurring over my left eye,with a type of headache over my eyebrow area,got so bad has it was getting dark outside and having t put on lights in the home,hubby took me to A &E eye hospital,well could not be believe what he said,yes I have had Uvietis on a few occasions relating to my Crohns in small bowel and expected home to say again that what it was,but he said I had Herpes Simplex in my eye and also starting in my right eye,has he said all sensitivity had gone from right eye,although that one seemed ok,he reckons that it is because I am on Immunosuppressants azathioprine.i asked him if I could lose my sight through it,Is answer was as long as I continue to take antiviral a for the rest of my life,it should be ok.I was mortified!!!!!
So now to get the pain under control,and to prevent permanent scarring on my cornea,I am taking Zovirax tablets by mouth 5 times a day (antiviral )Zovirax eye ointment 5 times a day,Mydralate eye drops 3 times a day,(antibiotics)Maxidex steroid eye drops 3 times a day,and painkillers to keep the pain under control.I am so worried and scared,I need to drive because it is part of my job.
Can anyone help me here please,has anyone had this with Crohns or whilst on Immunosuppressants.i could do with some good news.

Thanks you
 
I had to go to local eye hospital last night,had a film blurring over my left eye,with a type of headache over my eyebrow area,got so bad has it was getting dark outside and having t put on lights in the home,hubby took me to A &E eye hospital,well could not be believe what he said,yes I have had Uvietis on a few occasions relating to my Crohns in small bowel and expected home to say again that what it was,but he said I had Herpes Simplex in my eye and also starting in my right eye,has he said all sensitivity had gone from right eye,although that one seemed ok,he reckons that it is because I am on Immunosuppressants azathioprine.i asked him if I could lose my sight through it,Is answer was as long as I continue to take antiviral a for the rest of my life,it should be ok.I was mortified!!!!!
So now to get the pain under control,and to prevent permanent scarring on my cornea,I am taking Zovirax tablets by mouth 5 times a day (antiviral )Zovirax eye ointment 5 times a day,Mydralate eye drops 3 times a day,(antibiotics)Maxidex steroid eye drops 3 times a day,and painkillers to keep the pain under control.I am so worried and scared,I need to drive because it is part of my job.
Can anyone help me here please,has anyone had this with Crohns or whilst on Immunosuppressants.i could do with some good news.

Thanks you
I have eye pain alot but am not on immunosupressants. Wish I could be of some help. Someone on here will be...:heart:
 

annawato

Moderator
Staff member
Sorry Trish I have no idea about any of this but I can understand how worried and upset you must be. Vision is so precious to us. Sounds like your vision will be ok so long as you take the antivirals but what a hassle and what a regime! As if you didn't have enough to put up with with the Crohn's. All I can do is send my love and support. Let me know how you go.
 
Annawato,thank you so much for your kind words,We never know what is going to pop up from this disease do we,I would not ind so much if these manifestations were trivial,but they are not,so far I have had to have my Gallbladder removed through open surgery,because of the Crohns,I have Seron Negative Polyarthralgia,again Crohns related,I have had to have a Funicplasty operation,due to severe Crohns cause Acid reflux and eroding my gullet,this is without the 3 bowel ops,Uvietus and now this Herpes Simplex in my eyes.I still have to struggle to work,because it is so difficult to get DLA (disability Living Allowance with this illness)Am feeling a little better today ,pain not so bad,but left eye extremely blurred.
Thanks for you good wishes
 

annawato

Moderator
Staff member
You're more than welcome Trish, sometimes we just need to know someone is listening and caring even if there is nothing they can do to help. The things this disease throws us would not be believed by most of the population. Its not just our bowels its everything else that gets attacked on the way or damaged by the medicines or surgery plus the sheer difficulty with just never feeling 100% but looking to all intents and purposes as if you are well.
 
When I had this problem it was diagnosed as iritis inflamation. If check with a othmologist for steroid eye drops to see if it helps.
 
When I had this problem it was diagnosed as iritis inflamation. If check with a othmologist for steroid eye drops to see if it helps.
Thanx for your reply,yes I would have agreed with you regarding the Iritus possibility,but the ophthalmologist said it was definately Herpes Simplex,
My eye feels a lot better today after taking all the drugs I am on,started the steroids last night,but having to take loads if antiviral to push the problem back into the nerve,apparantley it attacks the cornea of the eye.
Thanx for replying
 
Thanx for your reply,yes I would have agreed with you regarding the Iritus possibility,but the ophthalmologist said it was definately Herpes Simplex,
My eye feels a lot better today after taking all the drugs I am on,started the steroids last night,but having to take loads if antiviral to push the problem back into the nerve,apparantley it attacks the cornea of the eye.
Thanx for replying
:ghug:Hugs to you Trysha from all of us. I'm still sorry to hear what you are going through. This disease is a monster we have to fight and give it all we have! I am angry at it and miserable today. Been sick all day and want to scream and cry and make it go away! I just keep praying for us. You're not alone Trysha~ I care!:hug:
 

Trysha

Moderator
Staff member
Hello Teresa
I am so sorry for all you are suffering.The eye infection is a monster but it will get better,
does take time though. How miserable for you.
You are in my prayers and thoughts.Wish I could heal you quickly.Feel better soon
Hugs and best wishes
Trysha
 

Trysha

Moderator
Staff member
I have had many eye problems, uveitis,keratitis, dry eye syndrome, herpes eye infection and map dot fingerprint syndrome (where the basement membrane shifts and you can't see , very blurred vision.
Been through the antibiotics, eye ointment, creams fluids etc.
What seems to work for me is taking flax seed oil, 1000mg/day.Also Muro eye ointment and drops.
The flax oil was suggested by an ophthalmologist but he said 1000mg x 2 daily which I did for a while and things seem to improve, now I just take 1/daily.
I also have had glasses since 8yrs old.
There are some preps such as Ocuvite capsules which seem to help some people.I have not yet tried them.
Problem is these things seem to go with the crohn"s territory.
hope everyone soon heals and starts to feel better.
Trysha
 
Hello Teresa
I am so sorry for all you are suffering.The eye infection is a monster but it will get better,
does take time though. How miserable for you.
You are in my prayers and thoughts.Wish I could heal you quickly.Feel better soon
Hugs and best wishes
Trysha
Hi again Trysh, Just been a bad day and trying to pray tomorrow I wake up and am fine. My hubby's show of his Photos at Ligonier days is this Friday thru Sunday and I want to be there with him. Fri. is our 5th wedd. anniver. and Sun. is his Birthday. So you can see why. Praying for a miracle...:)
 

CrohnsChicago

Super Moderator
I had a few days of headaches and eye pain in the back of my eye once and woke up one morning after and my vision was very blurry. I went to the bathroom to look at my eyes and saw white stuff collecting inside the bottom of my pupils. Turns out I had uveitis. The white things were white blood cells collecting in my pupils. Had to do prednisolone for two months before it finally went away. Luckily I was able to treat it and it went away since it's nothing you should play around with and let linger.
 
Thanks everyone for your very caring thoughts,and I sincerely mean that,I have attended the eye hospital again this morning here in the UK,they gave me another thorough eye check,they said it was healing but they reckon the infection and steroid drops I am having to administer have put the pressure up in my eyes,I have now to take another eye drop that drops the pressure down,hopefully this will only be temporary,I am to stay off work till infection clears up and to return to eye hospital next Tuesday.
I am you all start to feel better really soon,and my healing thoughts are being sent to all of my new founds friends here on this forum.
Thanks
 

annawato

Moderator
Staff member
Crohn's chicago, congrats on stopping smoking. I've also stopped recently though still using an electronic cigarette but it feels great not to be so dependent on something so bad for us cronies. Good on you!
Trish, sorry to hijack this little bit but just wanted to send chicago crohn's my support for stopping smoking. A very hard thing to do.
 
You are so very welcome,and Good on you both for stopping smoking,you will start to feel better regarding the crohns aspect.Smoking is one of the no-no,s where crohns is concerned,At our Gastro clinics there is always someone there at the clinic asking people if they smoke or not,and if they do advising them of the problems it's causes regarding Imflammatory Bowel Disease.
 
I had a few days of headaches and eye pain in the back of my eye once and woke up one morning after and my vision was very blurry. I went to the bathroom to look at my eyes and saw white stuff collecting inside the bottom of my pupils. Turns out I had uveitis. The white things were white blood cells collecting in my pupils. Had to do prednisolone for two months before it finally went away. Luckily I was able to treat it and it went away since it's nothing you should play around with and let linger.
Thanx for sharing tha!!!
I quit cigarettes 10 yrs. ago. Can only imagine the money I've saved and the lung damage.:thumleft:
 

CrohnsChicago

Super Moderator
Crohn's chicago, congrats on stopping smoking. I've also stopped recently though still using an electronic cigarette but it feels great not to be so dependent on something so bad for us cronies. Good on you!
Trish, sorry to hijack this little bit but just wanted to send chicago crohn's my support for stopping smoking. A very hard thing to do.
@Trish - know that the eye thing will get better. It just takes some time and careful observation. Not only did I have to do the steroid drops in my eyes, I also was fully dilated around the clock to let my eyes relax while they healed. That was interesting because I had to wear sunglasses even at work just to type on the computer and couldn't drive much for a while. I was quite the sideshow but at least my brand new designer sunglasses I made myself buy hid my stressed out eyes and made me look cute! LOL....And that's all you can do sometimes is just try your best to live as normal a life as you can during treatment knowing it can't be this terrible forever. Do something nice for yourself during this and try to find some humor or positive spin on this crohn's mess and everything else it causes it will make things a little bit easier to handle hopefully. Wishing you lots of peace and strength! :)

@Annawato & @723Crossroads - Thank you! It's really hard but it does get easier with time and determination. The only problem is on those frustrating days you have at work or when you are just stressed out in general. I try to at least get some exercise in during those periods. Not going to lie I have taken a quick puff on a night out with friends but that's it and I have not bought a pack for about over a month. I feel much better without them and the desire eventually does start to fade away.

And 723Crossroads, 10 years is AMAZING!! Congrats to you!!! I hope to achieve what you are right now :)

I quit once a while ago for 6 months and felt great, but this time I know I need to do it for good. The health consequences are so much more obvious to me now. And unfortunately sometimes that's what it takes for me to finally make a necessary change. But at least I am trying....

Best of luck to everyone! :)
 
@Trish - know that the eye thing will get better. It just takes some time and careful observation. Not only did I have to do the steroid drops in my eyes, I also was fully dilated around the clock to let my eyes relax while they healed. That was interesting because I had to wear sunglasses even at work just to type on the computer and couldn't drive much for a while. I was quite the sideshow but at least my brand new designer sunglasses I made myself buy hid my stressed out eyes and made me look cute! LOL....And that's all you can do sometimes is just try your best to live as normal a life as you can during treatment knowing it can't be this terrible forever. Do something nice for yourself during this and try to find some humor or positive spin on this crohn's mess and everything else it causes it will make things a little bit easier to handle hopefully. Wishing you lots of peace and strength! :)

@Annawato & @723Crossroads - Thank you! It's really hard but it does get easier with time and determination. The only problem is on those frustrating days you have at work or when you are just stressed out in general. I try to at least get some exercise in during those periods. Not going to lie I have taken a quick puff on a night out with friends but that's it and I have not bought a pack for about over a month. I feel much better without them and the desire eventually does start to fade away.

And 723Crossroads, 10 years is AMAZING!! Congrats to you!!! I hope to achieve what you are right now :)

I quit once a while ago for 6 months and felt great, but this time I know I need to do it for good. The health consequences are so much more obvious to me now. And unfortunately sometimes that's what it takes for me to finally make a necessary change. But at least I am trying....

Best of luck to everyone! :)
Five years after I quit, I found out I had kidney cancer in my left kidney. It had been there for years undetected.So good thing I did quit, or I may not be here to tell you about it. I had surgery and they removed the tumor and around it, but still have my kidney!! God is good! I am in remission and hope to be back in remission from crohn's soon! Good luck or God bless I should say... YOU CAN DO IT if I did! I smoked almost 2 packs a day for 28 yrs. and loved every single one down to my very last. So yes, you can quit!!!:hug:
 
hi Crohns Chicago,thanks for your nice message,I am going to start Transcendental Meditation this Saturday,am looking forward to this type of meditation,have been doing lots of CD Meditation and Hypnotherapy which is good,but I think TM medication goes far deeper,and I think that it will certainly bring my anxiety/Stress levels under control.The oly other time my stress levels are under control is when I visit the US,oh how I love your country,My family and I have visited quite a few times and just love it,and the people of course.
Trish x
 
hi Crohns Chicago,thanks for your nice message,I am going to start Transcendental Meditation this Saturday,am looking forward to this type of meditation,have been doing lots of CD Meditation and Hypnotherapy which is good,but I think TM medication goes far deeper,and I think that it will certainly bring my anxiety/Stress levels under control.The oly other time my stress levels are under control is when I visit the US,oh how I love your country,My family and I have visited quite a few times and just love it,and the people of course.
Trish x
Dear Trish22, I have a friend who started playing sround with Tm and a spirit involved started to haunt her and make her life miserable. When you are meditating on anything other than the one true God, you are inviting evil spirits to enter into you and your life. You need to research this and read about people who had to be delivered from evil spirits because of TM. I hope you will take my advice...:hug:
 

Spooky1

Well-known member
Location
South Northants
I have always had issues with my eyes. I get a great deal of pain in my right eye. That eye also has like a crescent of a gold moon rising from the bottom and moves across the eye, it is also the one that has night blindness.

I often have bloodshot patches and very dry eyes described as having tiny ulcers all over the whites. Moreover, both eyes have a thick top layer over the whites which comes away on occasions. This is all, i am lead to believe, to do with crohns.

One more thing, does anyone have badly burning eyes when they cry? i mean to the point whereby they need running under the cold tap. i just can't cry its far too painful but no optician or specialist understands.
 
Thanks for that 723 crossroads,I am quite level minded,and have gone into it and have some friends that practice it,I am not doing it in depth,just for stress reduction really,simply if I find it don't work,I won't do it,I shall go back to either my CD meditation or Buddhist meditation.
Spooky 1
I would really go and see some ophthalmologist at the hospital,if I were you,although my eyes seem a lot better now than at the week end just gone,they have found out today I have pressure at the back of my infected eye,He asked if anyone suffered with Glaucoma in the family,I said no,asked if I had got that,being quite alarmed,he said no,but my pressure was up,he seemed to think it may be the infection and the steroids drops that have caused it,I really hope so,am really frightened at the thought of glaucoma,although he did say no I had not. Have to go back next Tuesday.
Over riding my story whati am trying to say is,I could not feel any pressure behind my eye,so none of us really know what is going on,so really go and get checked out,itis quite scary what can happen to us Crohnies with suppressed immune systems.
 

annawato

Moderator
Staff member
@ trish, Tm meditation, hypnotherapy etc are all fantastic adjuncts to dealing with stress so good on you. And maybe you'll get a good and helpful spirit to help you!
@crohn's chicago, I've been using an electronic cigarette to stop smoking. It delivers nicotine and water vapour and is really helpful for those difficult times. Doesn't have any smell and none of the bad stuff so doesn't hurt us or offend anyone else. Of course it sounds like you'r over the worst of it but just though I'd mention it in case.
@spooky No burning eyes when I cry so cant help except to send a hug.
 
Hi Anna,hope you do to mind me asking,I noticed you have had 4 bowel resections,did you find when you came round you were in a lot of pain,that's the only thing that sticks in my mind,each time when I have opened my eyes after surgery,the pain is like nothing on this earth,I have tried to explain to theDrs/gastros,they keep saying but we give you lots of pain /sedation drugs,and drugs you can administer yourself via a watch system on your wrist,well them just do not work for my pain,I can cope with the after pains a few days later,it is just that initial pain when you leave the operating theatre.
Any advice
 

Spooky1

Well-known member
Location
South Northants
Trish, i scream the place down for four days and nights. the pain meds keep me awake24 hours a day and they just don't work. feels like i have had an axe struck into my torso! does remind me of what medieval warfare would have been like, or being hung, strung, drawn and quartered. I identify totally.
 

annawato

Moderator
Staff member
Yes the first two days are pretty awful. I'm ordinarily on pretty hefty painkillers so the last two times the anaesthetists give me a ketamine infusion and that helps a lot. The first time I had this it ran out about 4 hrs post op and the nurses were busy with an emergency so I had absolutely no pain relief for over 6 hours - absolutely horrendous!!!!!!! One of the relief nurses actually got fired because on top of it he was yelling at me not to push the pca button and set the alarm off - he didn't even know it went off automatically and I had nothing to do with it. Anyway I know if I can just get through that first 36 -48 hours it improves heaps, still sore but bearable. I'd definitely tell them that you don't find the pain relief adequate post op. There is no reason for them to have you in more pain than you can stand and it is even considered to be bad for you because it stresses the body delaying healing, and it stops you moving which delays improvement too. make sure you talk to your surgeon and anaesthetist before the operation so they can something stronger in place for you. Other than that it is just a waiting game. Just keep thinking every hour i'm getting better and better and tomorrow I'll be better again. Sorry not really helpful advice I know. I just found out today I have to have another operation with another ileostomy and the first thing i thought of was post op pain. Its just Not fair is it?
 

annawato

Moderator
Staff member
Spooky, i also get no sedation from pain meds, even the ketamine so its just lying there hour after hour waiting for the worst to past. Medieval, definitely!
 
If this surgery does come sooner than later,I will make sure I ask for a meeting with both surgeon and anaesthetist before deciding on the op,I have never met ananeathatist before deciding on an op,have you,they usually turn upa couple of hours pre op here in the UK.
And also tell you all the possible things that could go wrong!!!!!i can never get my head around this,persuade you to have an op,saying all the benefits,then an hour before the op,aneathatist and assistant comes round tosign form stating that you could die of heart failure etc and all the things that can wrong,iwas in floods of tears the last ime,andnearlynever went thru with it,I thought I was not going to wake up,it was dreadful.
 

annawato

Moderator
Staff member
yes its really odd how you only see the anaethetist at the very last minute. Its the same here. As if you're likely to back out as the are wheeling you in to the operating theatre! I've just learnt now to make sure they understand my pain needs beforehand so I don't get caught out. I guess they have to tell you all the bad things that could happen but these are a very small minority so don't worry too much about what could happen - the benefits of the surgery will be greater than possible side effects. Still scary though. :)
 
check your dietary intake of vitamin e, vitamin a(carotenoids, not retinol), iron intake(only iron from meat really counts, and protien intake. iron and vitamin a have relationships with each other.

if those are fine then, perhaps its something else, but these could be the first place to check for simple causes of dry eyes.
 
If you have red eye that looks like pink eye... H
It might be iritis. I know it sounds strange but I had iritis flare my eye and the doctor told me was related to crohns. Are you having flares?
 
You guys should consider a couple things:

1- Try LDA Immunotherapy
http://www.drshrader.com/ProblemsWeTreat.htm

There is a thread in this forum about LDA including links to find a physician close to you that uses LDA.
http://www.crohnsforum.com/showthread.php?t=45977

Dr. Wycoff does a nice little video on LDA Immunotherapy and mentions IBS and Crohn's specifically at around 4:30
http://www.youtube.com/watch?v=_hdwRQj1C4A


2- Also consider that 75% of people with severe allergies or auto-immune disorders also have problems with TMJ. And most people don't know it but TMJ can cause really horrible symptoms like brain fog and chronic fatigue, screwy vision, balance issues, etc. The reactions that the body is having cause the muscles in your shoulders neck, jaw and head to contract and this causes the TMJ and that presses on the trigeminal nerve and that causes all kinds of trouble including stopping signals to the brain that tell the brain to produce neurotransmitters and if you are low on these neurotransmitters then horrible symptoms are the result.

Dr. Klemons is likely the world's foremost expert on this topic. He is located in NJ, but he has a network of jaw specialists that are like minded, and he can refer you to one close to you.
http://www.headaches.com/
 

Spooky1

Well-known member
Location
South Northants
this looks so interesting, but i can't really go for that treatment, nor can i afford it. i bet my gi knows nothing on these subjects. i suffer so badly in the jaw and neck. interesting info. many thanks will try and find british practitioners.
 
Yes, it is likely that your GI doc will be clueless, like most physicians tend to be....We want them to be like House or Sherlock Holmes...to be interested in a mystery and to solve it. But 99% of them, in my experience, just punch the clock and have no intellectual curiosity. After 18 specialist with no clue, I decided that I was in charge and I would use them like tools in my belt.

Now, Dr Klemons at www.headaches.com who I mentioned above is one of the good ones. He is a dentist who specializes in the jaw. He is known worldwide in this field, and is considered the world's foremost expert, and very likely has a like minded colleague in the UK.

I would call his office and ask. I was able to speak with him directly on the phone and he referred me to one of his like minded colleagues on the other side of the USA closer to myself.

I might warn you guys that not all TMJ doctors are good. You really should contact Dr Klemons for a referral.

If you happen to be in the middle of the USA, then you can see or call:
Dr Robert Talley
Craniofacial Pain, TMJ and Sleep of Oklahoma
www.tmj-pain.com
448 36th Ave. N.W., Suite 103
Norman, Oklahoma 73072
Phone: 405.321.8030

You might also like to read this book...again by a dentist /jaw specialist ...it explains the issue and also provides a number of self therapy options
http://www.amazon.com/gp/offer-listing/1572241268/ref=dp_olp_used?ie=UTF8&condition=used

The basic therapy from one of these dentist jaw specialists, is to give you a set of two mouthpieces, one on top and one on bottom. These mouthpieces only allow your front teeth to touch. Your brain won't press hard on those front teeth for fear of breaking them, and so your brain tells those jaw/neck/face muscles to relax. It takes a couple weeks for your brain and muscles to fully respond, but the relief is almost immediate.

One last thing....I mentioned LDA Immunotherapy above...in the UK it is known as EPD and I believe it is available on the NHS
http://www.foodsmatter.com/allergy_intolerance/management_treatment/articles/epd.html

Taking LDA (EPD) will dramatically loosen your jaw / neck /face and upper back muscles...or at least that has been my personal experience.

My doctor likes to use LDA Immunotherapy (EPD) and LDN (low dose naltrexone) together.

I take both LDA Immunotherapy (EPD) and LDN (low dose naltrexone).

The LDA immediately gave me tremendous relief from pain in my back, neck, jaw, and face too. And then a couple months after beginning LDA (EPD), I started LDN (low dose naltrexone) and this again loosened all those muscles and markedly reduced my pain.

This loosening not only almost totally eliminated pain, but it also dramatically improved my vision and balance. The theory is that the tight muscles in your neck/jaw/face pull on tiny little muscles inside your ear and these control your balance as well as some part of your vision. TMJ is well known for also causing eye ball and face pain.
 
but he said I had Herpes Simplex in my eye and also starting in my right eye,has he said all sensitivity had gone from right eye,although that one seemed ok,he reckons that it is because I am on Immunosuppressants azathioprine.i asked him if I could lose my sight through it,Is answer was as long as I continue to take antiviral a for the rest of my life,it should be ok.I was mortified!!!!!
Lysine should be helpful here. However, you have to use a lot, perhaps a tablespoon a day for a month or so. Lysine suppresses the growth of Herpes Simplex. The good news is that taking lysine might also help you suppress the growth of some of the herpes viruses in your gut. (They often find the herpes family viruses of Epstein Barr, CMV, and HHV-6 in the intestines of those with IBD.) The Lysine can suppress the growth of these viruses, but by itself, it isn't going be able to totally eradicate the viruses. So, even if you feel a lot better after a month or so, you may have to still use at least some lysine on a continuing basis, just to make sure the viruses don't get the upper hand again. Calcium, selenium and vitamin C will also help keep viruses in check.

To keep herpes viruses in check, you need to keep a high lysine to arginine ratio in the foods you eat. Look up the amounts of arginine and lysine in various foods. Avoid foods high in arginine, like nuts. Use more of the foods high in lysine, like yogurt, if you can tolerate that.

CMV is a known inducer of uveitis / glaucoma. You definitely want to keep that virus in check. If you are interested in more supplements that keep viruses in check, you might want to watch Dr. Tent's video called "The Exploding Autoimmune Epidemic."
 
I noticed that a few people mentioned cigarettes. Smoking is associated with increased risk of glaucoma. One reason may be the cadmium in the cigarettes. Cadmium is associated with glaucoma.

H. pylori infection is also associated with glaucoma. Possibly H. pylori sets you up for the glaucoma / eye problems because of all the nutrients it eliminates, like phospholipids and vitamin B12.

H. pylori infections are very difficult to detect using the standard tests if there is a problem with dysbiosis. (Dysbiosis means the wrong bacteria, yeast, viruses and parasites are inhabiting the intestines.) Since there is a problem with the standard breath test for H. pylori, one should look for markers of H. pylori infection, like possible low manganese, high cadmium, low copper, low arginine, low iron, low B12, low carnitine and low phospholipids.

Here is an amazing but long lecture by Dr. Amy Yasko on how to diagnose and eradicate H. pylori infections. http://www.dramyyasko.com/resources/webisodes/h-pylori-another-piece-to-the-puzzle/
 
The LDA Immunotherapy injection has several bacterial "mixes" , klebsiella, and strep and others too...LDA turns off the bodies reactions to those bacteria....this has been a miracle for me.
 
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