Hi Everyone.

I am finally having this stomal endoscopy tomorrow (almost 6 months after I first found the ulcers) to try to determine if I have Crohns. Wee Willie has very kindly obliged by making sure he is covered (I counted 6) in ulcers. My GI has insisted that I do the 3 day prep for this (probably due to my slow transit time) so I'm on clear fluids only today then nil by mouth tomorrow. He has very kindly replaced the Picolax with Movicol but it's still yucky to take! Luckily I'm on the morning list.

My gut has been playing havock this last few months (probably due to the stress of everything else that's happening at the moment) with pleanty of cramping, watery stools and back pain, along with the ulcers. Hopefully this test will at least give me a proper diagnosis and therefore proper treatment because my doctors haven't wanted to give me anything to put me in remission until after the scope.

Other stuff that's been going on and is equally as scary (and probably contributed to this latest flare) is a problem with my right eye. I first noticed that I wasn't seeing too well out of it about 3 or 4 months ago so went to see my optician thinking my distance glasses needed updating. He told me that he thought I had a retinal edema and would write to my doctor recommending that she refer me to the specialist at the hospital. That letter sat on her desk for 2 weeks and so it was another 2 weeks before I got an appointment letter which was to be the 20th of June (6 weeks after seeing my optician!) In the meantime my sight deteriorated so I went to A&E and saw the on-call opthalmologist (sp?) he arranged for me to have extensive tests and took pictures of the eye.

That was when he dropped the bombshell that I had a very rare eye condition called a "vitelliform lesion" (Best's disease in children) and that there was no known cure. I have already lost my central vision in that eye and it could possibly get worse and affect the other eye.

Well I had just got my head around this when I had my follow-up appointment this week and the consultant was explaining the implications of this disease while examining the eye when he suddenly exclaimed "Oh! You have a new diagnosis! Your vitelliform lesion has evolved into a macular hole!" This means that the original diagnosis was wrong!

The upshot of that is that a macular hole is at least treatable and I will have to have surgery on it asap because sight will certainly get worse and it could cause a retinal detatchment. The downside is that this operation causes a cateract in most people so he will do he cateract operation at the same time. They will remove the gel-like stuff that fills the eye and relace it with a mixture of gas and air in the hope that the pressure of the gas will heal the hole.

The problem I face is that I might have to do what they call "posturing" for about 2 weeks afterwards. This means I will have to remain face down for 50 mins out of every hour so that the bubble of gas stays up against the retina. My consultant is hopeful that this may not be the case but he won't know until after the surgery. Now as you can imaging I am freaking out as to how I am going to manage Wee Willie (or indead remain face down with him in the way) while doing this "posturing". Oh and here's a real killer.... He also told me that this usually only happens to elderly people between 60 & 75 (I'm only 51!)

Anyway, wish me luck and I'll keep you all posted.

Thanks for listening.

Shell

This message has been edited. Last edited by: Shell Worrall,

Hi Shell,

Wow, you are certainly going through a lot right now! I will be praying for you as you face all these difficulties with your body. Please keep us posted as you can with how you are doing.

Hello Shell,

I too am so sorry to hear of all the problems that you are having.

I will be sending positive vibes across the pond and will be thinking of you. Please keep us posted and feel free to share in your fears and concerns. PM me if you like.

Wishing you the best!

John

Oh Shell! This breaks my heart. You've already been through so much. Would you be in the hospital while doing this posturing? I would think it would be so difficult to stay at home and do this. How will you get your meals? Preparing and eating one takes more than 10 minutes.
I hope you have good people around you to help you through all of this.

I will pray for a speedy recovery. Just take one day at a time and check in or have someone else check in and give us updates when you can.
You are such an inspiration to this site and even reading your post about everything you're going through now, you still sound upbeat and have a wonderful attitude. That attitude of yours has to make things easier to bear! And you are an example to all of us; thank you.
God bless,
Lori

Shell,

You must have typo-ed that. You must have meant to say 31.

I'm sorry you're going through some more difficulties. I hope that the scope goes very well for you and an easy solution is found!! I'm also crossing my fingers that the eye siutation will be corrected for you with the surgery and that you won't have to remain face down for so long. That does not sound like much fun - but you are one tough chick and I'm sure you could do it if you had to. One of the biggest hurdles would be engineering a rigging system that would allow you to look down at a compter screen through a pillow of sorts with a viewing hole cut in and type away so you can give us all updates.

Hang in there! I'll be thinking of you and sending prayers your way.

Rick

Oh dear, Shell! That's such an awful lot to deal with. At last there are treatments that can be done. I'll have my fingers crossed for you that everything works out alright.

Good luck,

Suzanne.

PS: Given that you may be face down for a while, there is no better time for your husband to extensively practice his back massaging skills

Dear Shell,

I'm so sorry to hear about the medical problems you are having. Your posts have helped so many people (me included) and I am praying for your speedy recovery.

I am a physician in New York and find it unconscionable that it took 6 weeks for you to see an ophthalmologist. Michael Moore's movie Sicko extolls your system but I still can't believe how you were treated. Is your eye surgery scheduled with a retinal specialist? (I feel that with a macular hole it must be performed by a retinal specialist). A good friend of mine is an ophthalmologist and he worked with an excellent retinal specialist who now resides in London. Her name is Carol Cunningham. If you call her and say that you were referred by Alan Marks (my friend and her colleague), I'm hopeful that she would be able to refer you to the right person for a 2nd opinion in your area (if you feel this is necessary of course). I'm trying to get her phone number for you and if successful will PM you with it. Please feel free to PM me with any questions.

I wish you all the best in the world and am confident that you will have a happy ending with all your problems.

Ken

I'm sorry to read that all of this is happening. Hang in there, Shell. You have such a wonderful, positive outlook on life, even when things aren't going your way, and you offer so much support to everyone here. I hope that things turn around for you quickly.

Wow, Shell, for you the fun just never stops, does it? I am so sorry you're having the eye surgery. My mother had a similar surgery for wrinkled retinas and had to do the posturing for a week or two--at age 70 something and without the ostomy complication, of course. It is very delicate surgery, but was quite successful. Hopefully you have enough time to figure out the logistics and prepare for it. I imagine it will be somewhat of a relief just to have the final accurate diagnosis on the IBD. Hope all goes well.

Shell,
I don't post often, but do a lot of reading on this site. Your posts have often helped me in not only knowledge but also perspective. Your positive attitude has frequently given me fortitude in dealing with my own situation. I just wanted to wish you luck and send some positive vibes you way. I'll keep you in my prayers.
-Charlene

What a lot to go through - I'm really sorry. I hope things will start looking up - I'll say a prayer for you.
Ted.

Oh Shell, I'm so sorry you're going through this. If (that's IF) you have to do the face down thing, maybe you can get a big piece of foam and cut a Wee Willie hole in it. Or get a nice little pillow and put it on your table - then rest your head on it while in a sitting position. Put the tv on the ground facing up or read a book. Then there's no pressure on WW.

At least you have Frank there to help you and I'm sure he'll do everything he can to make sure you're comfortable.

Sending the best of vibes for eventless procedures!!

kathy

I'm sorry to learn of these continuing troubles and ailments. You are a real trooper with a fantastic attitude given everything that has happened and is happening. Prayers will be sent your way.

Shell,

I am sorry that you are going thru all this. I always look forward to reading your posts. You, like Jason, Janna and may others here always have a positive attitude no matter what you are facing. I want to wish you best of luck and to let you know that I will be praying for you. You are an inspiration to me.

Thanks for all the well wishes and kind words, you Guys are brilliant as usual!

Rick, thanks for the complicment! I'm still working on the rigging thing and am thinking of doing something creative with mirrors.

Ken, Thank you for your very kind offer. However, I live on a small island which has it's own government and health system. The wheels of our health system grind excrutiatingly slowly so this is pretty typical of the kind of waiting period here. I am very lucky that we do have a good opthalmologist on the island who does specialise in retinal surgery, but if I did have to travel to the UK for this (like I had to with 8 of my 9 abdo surgeries) then unfortunately we don't have a say in which surgeon we get refered to unless we can afford private medical insurance in addition to our Social Security healthcare contributions (which I can't). I'm just glad they can do this here but thanks for the kind thoughts.

Connie, the hospital will lend me a special chair to use at home while I need to do the posturing, but I'm hoping that I won't need it. The surgeon has said that he will be putting more gas than usual in the eye because of doing both the macular hole repair and cateract surgery at the same time, so hopefully I won't need to use it. I won't know until after the op though. I agree that it will be a relief to get a final diagnosis on the UC/Crohns mystery.

Kathy, thanks for the great ideas for getting around the logistics of this and means of relieving the sheer bordom, but my concerns are how the heck do I do a full kit Wee Willie change and shower in just 10 minutes? (the maximum amount of time allowed in the upright position) Not to mention the usual eating, drinking toilet trips and emtying of bags etc (especially at the moment while Wee Willie is so active with this latest flare) All this has to be included in the 10 minutes. Still I guess I'll just have to cross that bridge if and when I get to it!

Thanks again everyone for all the good vibes and well wishes. I'll update on the endoscopy tomorrow when I get back from the hospital.

Shell