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U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 9/23/2017 1:20 PM (GMT -6)   
Checking in. How are you gals?

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9922
   Posted 9/23/2017 7:26 PM (GMT -6)   
Better not to ask really :/

The Crohn's is stable enough after a bad blip a couple of weeks ago. And my eyes are holding up, just about, with the steroid drops (feels like I'll never get off them at this rate though). But my mood is about as rock bottom as rock bottom can be. Every time I think I might be getting better, I just crash again. I'm in a state of pure anxiety about the future, which nothing can assauge - so I'm trying to stop thinking about it 'cos nothing can reassure me.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 9/26/2017 11:48 AM (GMT -6)   
UB,

Sorry for delay. Got feeling frisky, tried shake n bake with a little pepper in it and realized I still can't eat it. Dog gone it!!!!

How are you doing? Is the stelera helping with the fistula/abscesses? Bowels?

Are you going in to ballet? Keep doing that if possible. The exercise and just being with people will help.

Thought of you the other day. Neighbor's dog came to visit dragging his leash. Made me think of you and your dog. This dog....he is Huge....must weigh 140-160 pounds. His back comes to my waist...(I am only 5 feet tall) and his head is so big. He has the biggest kindest eyes. He is solid white. If I sit on the front porch he comes over and just stares into my eyes, shakes his head, sighs, and then lays his head in my lap. After 20 minutes he will look back into my eyes, smile, wag his tail and go back home. I guess it is his way of comforting me...or himself. Having that contact is just so special.

Please let me know how you are doing....

NCOT,

For me the uveitis was a true struggle for six months. Now it comes and goes...a few days every six weeks or so. (But the veins in my eyes which lead to the raised spot seem to be red almost all the time now.)

The anxiety....oh I know what you mean. I used to think that there was light at the end of the tunnel...now I think if there's a light its another train heading my way.... I seem to be waiting for the next little thing...and because of that every single little thing becomes a giant big thing and it is a never-ending circle. I don't know how to address that because I am in the same boat. I just fake it and hope I will make it.

Hang in there!

Coo.
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9922
   Posted 9/26/2017 4:31 PM (GMT -6)   
Are you going in to ballet? Keep doing that if possible. The exercise and just being with people will help.

I agree with this. I nearly gave up on my gardening placement, because I was so depressed and not getting anything out of it. In fact, it was making me feel even worse. But the last two sessions have been better and at the last one I was able to engage with people again. It is definitely a vicious circle: you feel depressed and don't feel like talking to people, but the only way you will feel a bit better is by talking to people.

@Clo - I've been dealing with uveitis for most of this year. Steroid drops do keep it under control, but only just - it keeps on coming back, despite the drops (but then more drops make it go away again). God knows what will happen to my eyes in the future if this doesn't go away.

I never to suffer badly from anxiety, but now it's become all-consuming. Stuff like CBT doesn't help; I know full well that all my worries won't come to pass. Some will, some won't. And doubtless there will be new problems that I haven't even thought of yet! My mind just never shuts up (perhaps I should give meditation a serious try, I don't know). My last antidepressant did shut my mind up for a few months, which actually was a welcome relief - unfortunately the thoughts started coming back. To be honest, it always felt like the antidepressant was just masking things rather than treating them; much like how steroids mask inflammation but don't treat it in the slightest.

It's frustrating beyond belief.

Anyway, thanks!
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 9/27/2017 2:51 PM (GMT -6)   
I'm here Clo and NCOT!!

Priorities first: my dog!! Roxie is a darling 11 year old blond and white american cocker spaniel. I've had her since she was 9 weeks old. Sadly, she went stone deaf when I was in hospital over 6 weeks. She doesn't care as she's as sweet and happy as can be. I'm teaching her hand signals so at least she can "come when called." The weather in Toronto has been no short of stifling over these last 2 weeks...plus 95 degrees so we haven't done too much park runs but somehow she's very content. I get envious of her perfect poops and her ability to eat raw veggies!! Wish I could show you a pic. The crazy thing is that she always knows when I'm really sick or about to be. She's not a cuddly lap dog by any means but when I'm sick she lays down on my legs or tummy.

Regarding Stelara, my bowels are doing well all things considered. 1-4 formed, but with morning urgency. I've been experimenting with more foods and have some troubles this week but I don't think I'm heading backwards. Yesterday, I spent the day at the beach!! In my bikini....who cares about my scarred up legs??? Today I'm beyond exhausted though and feeling down that a beach trip wipes me out (unlike those darn healthy people!) I did catch a virus last week just following my shot so no ballet. Tomorrow (aka TUTU Thursdays) I have IVIG so I won't go either. Next week.

I'm getting yet another abscess and am fearful of the pain and ending up back in ER. I have 2 appointments with 2 different CRS in October. I hope they will do a LIFT. I still don't have any support for the vaginal pain I'm insad But I'm pretty sure the RVF has closed...again....

Clo: how are you doing on metho? Do you find that it's worth all the side effects?

NCOT: yes, it's better to ask and be a friend then not to ask. Did you connect with CCF? How are you sleeping? I hope you can get on Stelara soon....
Agreed about socializing and a vicious cycle of depression and isolation. You can only do what you can when you can. sorry about the cliche;) Are you watching anything good on Netflix?
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9922
   Posted 9/27/2017 7:15 PM (GMT -6)   
I'm sorry about your dog going deaf, UB. Hopefully, as long as she still has her sight and sense of smell she doesn't miss it too badly.

95 degrees is nuts: I'd die. After a cold snap in the middle of September, this week has been great, weather-wise. It could stay like this all year round and I'd be happy - not too hot or cold, it's about right.

Nah, not got in touch with them yet :-/ I could ask them for help with my PIP appeal - I never thought about that actually. Dunno how helpful they'd be, but I don't know until I try. As for Stelara, I've got an appointment with my GI on the 10th October and am hoping we can start the process of getting on it then (although he might need to do tests to see where my Crohn's is at first).

Saw my surgeon today. The timing was a bit unfortunate as I had almost nothing new to tell her since six months ago. But had a good talk and felt better for it afterwards - we even shared a brief moment of loathing for the Tories >_>. Pretty sure she would have had the common sense to be anti-Brexit too, but we didn't get that far in our conversation. But I did talk to her about the Crohn's, the uveitis and depression. I'm seeing my GP tomorrow and, on her advice, I'm gonna request a referral to a consultant opthalmologist. The depression is even more stubborn than the uveitis. No easy answers there, even if I could actually get an appointment with a psychiatrist. But I'm somewhat better, if not out of the woods.

Not watching anything on Netflix at the moment. It feels ridiculous to say I'm too lazy to watch TV, but... I'm too lazy to watch TV :-/ Any good series you can recommend?
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