What a bad news day! Got hugs?

[Nancy Lee]

Well...today I was to see my G.I. doctor to decide if I was to go on Imuran or not.

Didn't even get a chance to discuss that as I came up with new symptoms while I was on vacation which I mentioned to the doctor today....like repeated bladder infections, passing of air where I should not be, etc. These symptoms he believes to be from a fistulea running from the bowel to the bladder. I asked him what can be done and he said surgery and/or Remicade.

So I am scheduled for a small bowel follow through and an air contrast barium enema. Oh joy! Oh bliss!! (Feel free to jump in here and let me know how painful these tests may be and anything else about them, if you have had them)

Also the doc is setting me up with an eye specialist ASAP as I have ulcers on my eyes which make the whites red and my eyes tear. All Crohn's related.

While he was at it he told me I have Crohn's arthritis in my wrists and hips.

I'm really bummed...I've handled this disease quite well, or so I thought for 10 years and now my whole body is falling apart!!

Guess what gang?
Nancy needs hugs!!!!

 

[Cara Fusinato]

Nancy! Two things. I have had the small bowel follow through and thought it a very easy test, though the fluffy liquid will run through you kinda quickly.

But I wanted to mention the eye ulcers. Do you have open ulcers in the surface? I have Persian cats who are prone to the same thing. I heard an article many years ago tipping me off to something. I had a cat with a pretty good eye ulcer. There is a product by Nature's Sunshine called EW (Eyewash). You make it into a tea by opening the capsule and mixing it with water then straining it through a paper towel or cheesecloth (about 1/4 cup of water to 1 capsule -- you can keep it for about 3 days and then need to make fresh). You drop the liquid into your eyes about 5 times a day at first and then down to about 3 times. It cures eye ulcers in about a week to two weeks. I have personally tried this on my Persian and it healed up without a scar or anything. I think it burns a bit when you drop it in, but the cats don't much mind. I have used it with conjunctivitis and other eye issues with the cats too and it clears up all eye issues straight off. Since eyeballs are eyeballs species irrelevant, you may want to try this before they do surgery on your eyes -- because eye ulcers don't respond well even to steroid preparations. When my cat came down with it, I had the product overnight fedex'd to me from these people www.upwithherbs.com -- Elaine Crews is the owner and you can call her too. She is wonderful! And a cancer survivor.

Hang in there. You have hugs from me!!!!!

 

[SarahJWills]

Hi Nancy
Sorry to hear you are going through rough times. I have recently had a barium follow through - unpleasant to drink but not an uncomfortable procedure. The enema is far more invasive so I am afraid is more uncomfortable. I came home yesterday from a week in hospital caused by a flare up - I had a right hemicolectomy in January and haven't really been well since. I have been Pumped full of hydrocortisone and anti-biotics. Started Azathiprine/Imuran two days ago 75mg a day along with a high level dose of prednisolone. Tolerated imuran 10 years ago when my troubles began so hoping its going to work for me. Thought I'd post this to let you know your not alone in crisis zone.

Big massive hugs Sarah x

 

[Sojourn]

Nancy, sorry to hear of your recent report. It is good that you've had almost 10 years of doing well though. I look back on the 4 years I was doing well and am thankful at least I had those 4 years and accomplished a lot during that time. I'm facing the same decision, Remicade vs Surgery, if my current enterocutaneous (connecting to the skin) fistula does not heal.

 

[katiesue1506]

:stinks: HUGS!!! Well are you not able to tolerate Remicade? Or do you just not want to deal with that? I was just wondering because Remicade is what threw me directly into remission. If I were in your position I would RUN AWAY from all forms of surgery... But ten years is quite a feat... you should be very proud of that. I'm running on 4 months (seem to be sneakily declining)

But anyhow... I really hope everything goes well for you. I wish you the best!

 

[Nancy Lee]

Thanks so much everyone for your helpful thoughts, concerns, and hugs!
Especially the hugs!

Cara thank you so much for the PM and I have saved the link!

It's not that I can't tolerate Remicade, if that is what's needed. I'm just wondering if it can heal a fistula?? No way do I want surgery if I can avoid it at all.

You have all made me feel much better...
it was just one of those 'poor me' days
where I lie face down in my pillow and yell I HATE CROHN'S!!! :depressed:

Not looking forward to the small bowel follow through either.

I'm a whimp when it comes to anything painful being inflicted upon me.

Thanks again everyone.
Healing hugs to you all, Nancy

 

[Cara Fusinato]

If you sweet talk the X-ray tech, he/she will leak the info. to you when they check it for accuracy -- mine did!

 

[Ilysha]

Nancy,

Big hugs! Hang in there. I've read a lot of good things about Remicade and fistulas lately. I take Remicade every 2 months and its very helpful. Although I don't have fistulas, I can vouch for its effectiveness as a drug overall. At the end of the cycle, you start looking forward to Remicade day--I have mine Tuesday and I'm looking forward to it.

It might be worth a shot to avoid surgery if you can.

Hang in there!!!! I'm sure you'll get all of this new fun stuff under control soon.

 

[Cog]

Big hugs too

Remicade completely quitened down my fistulas (no troubles since touch wood) and significantly reduced the amount of inflamation in my body at the time. It enabled me to have a colectomy in one operation not two. The surgeon wanted to do as little surgery as possible, I am OK with that.

Keep your spirits up

 

[D Bergy]

I do not have any advice for you, but I am sorry you are not doing too well lately.
When I had a Barium Enema my symptoms went away. This was long before I knew I had Crohn's. Maybe you will get lucky and have the same result. Really hard to find an upside to a Barium Enema. I swear I could have cut bolts with my sphincter when I had to hold it in.

Good Luck

Dan Bergman

 

[KCMike]

Nancy, there is no way I would consider you as a wimp. You have had to battle Crohn's for a long time. That in itself takes a very strong person. When you go in for your tests you won't be alone. We will be with you in spirit. This is just a temporary setback. You've always had a positive attitude. There is no reason for that to change now.

 

[ltordo]

Hugs Nancy!

I have a recto-vaginal fistula and have chosen Remicade to treat it.
Will be receiving my first treatment on September 21st.

I chose Remicade as my GI said that it can prevent more fistula from forming,
where the surgery will not.

Lynn

 

[Lody]

Support???

Well- I feel your pain-

I was diagnosed with Crohn's on June 17, 2007. Exactly 1 month later, July 17, 2007, I was diagnosed with Breast Cancer-

I am having a full mastectomy with reconstruction on Sept. 18th as I am so well endowed that they can't do radiation- since the cancer is non-invasive there will be no chemo.

Last Thurs I had a sentinal lobe biospy- and they found more cancer- but not enough to treat!!!!!!!!!!!!!?????????

They now want me to see the chemo oncologist before I have the mastectomy -

You want to talk about how stuff can affect your Crohns???? Sorry if I sound like I have a bad attitude, but my outlook through all this has been great- and now with the news of the nodular cancer, I can't take it- I have a 10 year old to think of- I don't know how stong I can be in front of him- I lost it- I have spent the last 2 days in bed- I returned to work today, and my boss is such an incompassionate ass that I wished I stayed in bed. He has no clue!!!

I guess the best I can do know is make sure I give this illness to the Lord and put it all in his hands- major surgery in 11 days, and then I thought I was going to be clean- off the hook- you know?

Just wanted to get this off my chest- this is why I haven't been on the forum lately- been nusy with the cancer-:depressed:

 

[Nancy Lee]

I am so sorry Lody.

Here I am crying like a baby because of a fistula and tests that have to be gone through etc., and you're fighting two battles. Crohn's and cancer.

But you know I've learned that no matter what happens,
or how bad it seems today, life does go on,
and it will be better tomorrow.

Sometimes life seems to fall apart a little at a time,
and we want to fold up our dreams and put them away.
Then from somewhere inside, there comes a song of courage
and we know we can never give up.

Hope is that song we sing to ourselves, and although it may be difficult to hear,
it is always there for us, deep within our hearts.

Remember, faith can move mountains,
love unbreaks the shattered glass;
believe with all your heart, my friend,
and watch the shadows pass.

You see...I believe in the sun even when it's not shining.
I believe in love even when I'm not feeling it.
I believe in God
...even when He is silent

Holding you close in my heart and prayers,
Healing hugs~Nancy

 

[D Bergy]

LDN or Low dose Naltrexone has been used for Cancer also. I am not a doctor and have no experience with this treatment, but I would take a look at it since it is you who is affected by this.

http://www.lowdosenaltrexone.org/ldn_and_cancer.htm

I really hope you can beat this back.

D Bergy

 

[Kev]

Hey Nancy Lee.. Here you go, an unlimited supply of great big old bear hugs, from a guy who could pass for a bear (and I've been told that my gas is pretty grizzly too).
Anyway, I've no advice too offer, except to say that you aren't alone, and let me know if my big old bear hugs are squeezing you too tight, OK? Keep us posted now..

 

[Nancy Lee]

Thanks Kev!
I love your bear hugs...
and they are never too tight.

 

[soupdragon69]

Hey Nancy,

Hang in there babe you know we are with you every single step and every single day...

Had a barium follow through myself when in hospital in July. Had probs after with abdominal distention - looked like I was carrying twins. Peppermint oil in hot water and peppermint tea are a fantastic help! The consultant also told me to drink lots of water afterwards to help things move through and it did!

Will be thinking of you each and every day.



Lody,

Am sorry you really have hit a brick wall of late. I recently had a breast lump removed and thankfully got the all clear last wednesday...

Don't stop coming here Lody. I know things have really pushed you into a corner but we are all here to pull you right out of it - you however have to allow us to ok?

Keep us posted and feel free to PM me anytime.

Lots of hugs to both of you.