Newly diagnosed - eye and skin issues related?

[Carrie SA]

Hi, I was diagnosed with Crohn's in Jan after ending up in hospital because the pain and diarrhoea got so bad. I think I've had this for years, so much makes sense now. Unexplained anaemia, low iron, constant low-grade fever, constant bouts of "gastro". I've been told in the past I have a spastic colon, IBS, numerous "infections" and various other things until I thought I was going mad, so having a diagnosis is a relief, although I'm still coming to terms with the concept of having an incurable chronic disease.

I've been on a low residue low fibre diet since diagnosis and my doc has just told me I can start introducing new foods, except I must still stay away from fibre. Bit of a mind shift.

What I'm really curious about is the other seemingly unconnected things. I have Rosacea that came on a couple of years ago, around the same time I developed the unexplained anaemia. Its getting worse, and I don't know if its because of the medication. Doc seems to think its the corticosteroids, but I'm coming off them now. Is this connected?

The other thing worrying me is my eyes. I am very short sighted, but haven't worn my contacts in about a year because they have irritated my eyes. Now my eyes are worse. Inflamed, red, running, and the vision in the right eye is getting a bit blurry, sort of like there's a film over my eye. Is this also Crohn's related?

Otherwise, apart from having to immediately scope out where the loo is wherever I go, and always having at least a change of underwear with me, I seem to be managing all right so far. I'm a bit nervous about introducing new foods though. I bought one little tomato to try, and its still sitting in my fridge because I'm too nervous to try it. Are there any foods, other than fibre, that I should stay away from completely? At least in the beginning stage of working out what foods irritate and what foods don't?

Sorry for all the questions. Although its a relief to at least know I'm not completely losing all my marbles, its still all a bit venturing into the unknown'ish.

 

[afidz]

Hello and welcome!
Thanks for sharing your story! What meds are you taking now? It sounds like your feeling better, especially if your doctor is encouraging you to start adding things back into your diet. Do you know where your disease is? When people ask about foods and what they should and shouldn't eat I always refer them to this thread, it kinda gives a general idea of what everyone else can handle. http://www.crohnsforum.com/showthread.php?t=17707
Take a look through there, maybe compare the safe foods listed to what is not in your diet and go from there. Everyone is so different, but my best suggestion is to take it slowly. If you add one thing at a time you can get a better idea on what foods still upset you.
I found a wiki article about the correlation between Roscea and Crohn's.. I will give you that thread as well, take a look, maybe even print it out for your doctor to see what the next steps may be. Here is that link
http://www.crohnsforum.com/wiki/Rosacea
In regards to your eyes, it is not uncommon for extra intestional manifestations to occur with Crohn's, one of the main places for that is the eyes, but from what I have heard from others, once they figured out the problem it was easily corrected. I am going to tag CrohnsChicago because I know she had problems with her eyes in the beginning of her diagnosis and she may be able to help you. I am also going to give you the link to the extra intestinal manifestations forum, you might find more answers there. http://www.crohnsforum.com/forumdisplay.php?f=83 .
If you have any other questions feel free to ask, I hope all if this helps!

 

[lizbeth]

Hi Carrie,

I was diagnosed in dec and like you am trying to come to terms with it, I aslo have diabetes which is complicating things cos the diets are the opposite of each other and the prednisolone has a negative effect on the diabetic control. It's a bit overwhelming.

I don't know about the Rosacea but the eyes can be effected, look up Uveitis and make sure to tell your gastro dr about it. I didn't realize there was so many additional symptoms unrelated to the bowels, I've had multiple joint pain for quite some time which seemly could be related.

Its very early days for both of us in coming to terms with the diagnosis, my GP said take it one day at a time so that's what I'm doing. Take your time to digest the situation, it will be ok, it took time to accept diabetes but I got there and am sure I will with this too.
I was told to avoid nuts, sweetcorn, mushrooms, potato skins, fruit and veg with skins, wholegrain breads dried fruit. The list is quite extensive and this is just a few definate no-nos for me. This info came from the british dietetic associations gasrtoenterologist team.

I hope this helps a bit. Take care and keep in touch.

 

[Karen]

I am sure that you will find lots of HELP here on the board !! There are a lot of nice people that are willing to help you out !!! So, keep your head up and stay strong !!! :heart:

 

[Carrie SA]

Thank you both. The links are very useful as is the information. There is so much information on this site!

I'm currently taking Asacol, corticosteroids that I'm tapering off, can't for the life of me remember the brand name now, Tramahexal, Scopex Compound, 4 strain probiotic, Vit A, D, E, B12, C, Folic Acid and Calcium. Thats on top of also taking medication for high blood pressure, gastric reflux and Polycystic Ovarian Syndrome. Oh well, as my uncle once said, its the creaking doors that last the longest!:ybiggrin:

I'm printing out bits of information as I go, the more informed I am, the better in control I feel! I don't know anyone with Crohn's, only vaguely heard of it before diagnosis, so its good to not feel so alone.

 

[afidz]

I am glad your here, there is so many people and such a wealth of information! I don't recognize some of your meds so I am going to have to do a little research, I know the names change sometimes between countries. How are your blood levels then since your taking so many supplements?
I think I have heard of Polycystic Ovarian Syndrome before, I am going to look that up as well, you can never know to much information!
Also, in regards to female problems, there is a females only section that is strictly enforced as females only, so if the need arises you can get a lot of info in there even if its not Crohn's related. Here is the link to that: http://www.crohnsforum.com/forumdisplay.php?f=61

 

[Carrie SA]

The latest bloods showed that my white blood count was up again, but that may just be the cortisone. I was taking a potassium supplement because that was way down, but its better now. Otherwise they were reasonable. Much better than at the beginning when the CRP and white blood count were way up there.

I can deal with hugging the loo like a security blanket, the fever, the tiredness, and all the other things, but I cannot deal with that pain, it is just incapacitating. :ack: So I guess I'm just a little terrified to try anything that might bring the pain back. I'll go slowly and take it day by day.

Its 3.30pm here now, so I'm just about ready to call it a day and go home and contemplate my tomato in the fridge. :wink: I hope you all have a lovely weekend, and thanks again. Just having communication with people in the same boat really helps.

 

[CrohnsChicago]

Crohn's is known to manifest iteself in other parts of the body such as the eyes and skin.

I came down with a uveitis flare once before that doctors could not explain at first, but once I got the diagnosis of Crohn's it made sense that I developed an eye condition.

It started out as headaches, then the inability to focus and then one day I woke up with completely blurry vision. You could see white blood cells collecting at the bottom of my pupil and I could see the blood cells floating in my field of vision. it was really scary. I spent a few weeks on prednisolone steroid drops and had numerous medical tests done before the condition cleared up. Thankfully I have not had another episode since.

If you have been diagnosed with IBD or suspect IBD and are experiencing eye problems, it is important that you both make your GI aware of the eye problems as well as make an appointment with an Opthamologist (one who treats diseases of the eye) in order to rule out a serious condition avoid permanent damage to your sight including blindness.

The other thing worrying me is my eyes. I am very short sighted, but haven't worn my contacts in about a year because they have irritated my eyes. Now my eyes are worse. Inflamed, red, running, and the vision in the right eye is getting a bit blurry, sort of like there's a film over my eye. Is this also Crohn's related?

 

[lizbeth]

I've been having eye problems recently but put it down to the pred making my blood sugars desperately high, I didn't think to say to my GI but I'm seeing my eye specialist on Thursday so will get it checked out then. Thanks Crohn'sChicago for your post.

 

[Carrie SA]

Thanks Lizbeth, please let me know what your eye specialist says.

 

[lizbeth]

Well I saw the specialist yesterday and he confirmed the blurry vision was caused by the elevated blood sugars and that now I have finished the pred hopefully things may settle. Sadly he also told me that the vision loss will not be fixed by the laser treatment, 2 goes so far and that in about 5 years the ares treated will begin to spread and I may lose more sight in the right eye

I'm not really a happy camper, sorry for complaining and thanks for listening.

 

[Carrie SA]

I am so sorry to hear that and am sending you an enormous long distance hug. :ghug:

 

[lizbeth]

Wow thats a big hug, thank you, it made me smile. :hug: