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Posted 12/31/2022 10:04 AM (GMT -8)
Anyone else ever get this from one of their doctors????

"Why yes, you are having extra intestinal symptoms and Yes you periodically do have episodes of diarrhea and pain....and you have a rectvagina fistula that spews mucus 4 or 5 times a day so bad you have to shower..... BUT I believe your IBD is in remission!


Ahhhhhhh..... No confusion there...

To me remission is a complete resolution of all symptoms that can be caused by IBD. Is my definition different from everyone else's? Cause its apparently vastly different from my GIs. Night sweats, fatigue, heat intolerance, skin and eye issues must not really count.

I'm so 🥴 frustrated.

Clo
Posted 12/31/2022 10:36 AM (GMT -8)
good thing we can choose whether to listen to our docs ....... or not ;-)

me personally, the R word never even crosses my mind - not a word or thought that has much value in my world -

are you treating your UC currently ?

TT
Posted 12/31/2022 4:56 PM (GMT -8)
Hi Clo.

You will be aware that I have faced this same situation with my Rhuemy, less so my GI, for 3 years and only recently have convinced him that my issues are either extra intestinal or independent autoimmune rather than the "wear and tear" and "hypermobility" garbage he spewed for 3 years.

It is with regret, and considerable ethical dilemmas that in order to get their attention to do further testing on me that revealed issues I had to use cards like "I'm getting chest pains"..."I'm seeing blood in my urine". By referring to such symptoms both consultants were then more ethically obliged to follow through with more thorough and immediate tests. And such tests have been finding new issues (though not of the cardiac or prostate area that I was making up). I regret having had to do this but unless I upped my symptom check with them they simply were not going to take me seriously. It turns out that my own intution on how might body feels and works trumps 2 x 10 years of medical school on their part. I have no regrets having to push the hyopthetical issues. If I did not I would still be assigned physio sessions and non-inflammatory gels by them when in reality my immune system is rumbling and simmering for 3 years and doing damage and not being picked up by standard diagnostic techniques.

If you think you are right you have to bug the **** out of your consultants until you get answers.

I wish you well and happy new year greetings. I enjoy your posts.

Charlie
Posted 1/1/2023 1:50 AM (GMT -8)
Thanks all for your responses.

I am compliant on all treatment recommendations from my whole group of doctors.

Currently on Remicade, methotrexate, and occasionally Prednisone, zofran, milk of magnesia and antispasmodics for my Crohn's/UC/Rectovagina fistula. (GI & Colorectal surgeon). I don't take pain meds beyond Tylenol.

Drinking 120 ounces of water per day, cranberry supplements, D-Mannose and taking estrogen cream for my nephrologist, urologist, urogynicologist and infectious disease doctors. (Low EGFR and recurrent UTIs)

Taking shots for my knees, plus using knee pain cream for my Rheumatologist and Knee Surgery Doctor's. But I gotta tell you--those shots have not worked for me. They keep talking about bilateral knee replacements. 🤣 I just keep using the pain cream when it gets bad enough that I can't walk.

I am Using prescription creams for my psoriasis/eczema. (dermatologist).

PCP has me on supplements - turmeric, red yeast rice, vitamin D and E, probiotics, and a few others that are intermittent.....

And still I have symptoms that keep popping up..... But my colon..... It looks fabulous. LOL. I just wish that I didn't have all the extra stuff. I'd love to take a really hot shower without the heat intolerance making me heave. (Who knew? I miss hot showers. Tepid showers are the pits!) The skin rashes are irritating But I am just Thankful it isn't PG again..... The eye problems only start to occur right before my next infusion if I wait a minute over 6 weeks... Or if I've been sick or stressed.....

But the other things occur daily. Sudden overwhelming fatigue where I have to lay down, heat intolerance, night sweats, And both my CRS and GI said this is my remission. This is what it looks like.

I'm. Just . So. Freaking. Ticked. Off.

They moved my goal posts. It (remission) went from resolution of your symptoms to yea.. well... This is as good as it gets. It's like they need to finally put me in the "resolved" list to make their case load look good. That's like cheating..... But I'm the only one that thinks that.

The GI and colorectal surgeon listen to me and we agree on everything else--exceot their new definition of remission.

I just wondered if anyone else had an experience sorta like this.

Clo
Posted 1/1/2023 9:14 AM (GMT -8)
when the meds were not making me happy, i changed my diet and never looked back - rock on !

TT
Posted 1/1/2023 9:42 AM (GMT -8)
oh yeah - it's a new year - hope y'all see some times of good health and good life in this coming year - hang in there - it does get better -

God Bless,

TT
Posted 1/1/2023 10:31 AM (GMT -8)
Seems to mr to be a case of “we’ve tried everything we know to do and don’t know what to do for you so you must be good!” Or something like. But I get how upsetting that can be when you feel like you’re being written off and dismissed.

I’m beginning to see some signs of age-bias happening too. A lot of “at your age” remarks — like I have one foot in the grave. Have a friend who is 90 with multiple health issues. He was sent to hospital with 105 temp from covid. Hospital “stabilized” him and sent him home after 3 hours!!! Feels like they were just writing him off as not worth their effort.

I am so sorry you’re struggling right now. Sometimes it’s hard to keep a positive attitude when facing so many health issues. Just want you to know your feelings are valid and you deserve to feel better!
Posted 1/3/2023 6:35 AM (GMT -8)
Didn't you have your colon removed and have an ostomy? I was a little confused because you said your colon looked fabulous.

Isn't there anything that can be done to get rid of the fistula?

Sorry you have to deal with all of this!!
Posted 1/3/2023 6:37 PM (GMT -8)
CC,

I have a colostomy. They did not remove all of my colon/large intestine. The portion right above the sigmoid and then down to the anus had severe scar tissue which caused obstructions. They removed the worse portions, left some of the sigmoid in the Hartman's pouch and left the rest of the colon alone. They thought that with Crohn's disease our wisest course of action was to save as much colon as possible. I still have a build up of scar tissue intermittently throughout my large intestines.... But so far... Knock on wood... I am doing ok as long as I am careful. I still have symptoms and health issues but... They are better than being septic and in the hospital. (My expectations are pretty low and fluid because I always want to be able to know that things could always be worse. Its my coping strategy.)

When they remove your colon completely I believe that's an ileostomy. Individuals with an ileostomy usually have to have a higher liquid intake, they have a smaller opportunity to absorb nutrients because of the shorter intestine length, and a more liquid "output" than individuals with a colostomy.

Please correct me if I am wrong about the ileostomy people.

It's sort of confusing.... Even for me. After my colostomy they scheduled a APR to remove the sigmoid section in the Hartman's pouch---but we couldn't do that so it evolved into a "modified APR". I coded on the operating table so they couldn't remove that sigmoid portion which is/has been evaluated as active with severe Crohn's....

But from the colostomy up... My colon (large and small intestines) look great--even with the build up of scar tissue and narrowing. My CRS thinks that little portion of my remaining sigmoid is what is causing the majority of the Crohn's extra intestinal symptoms.

I'm just frustrated. I had hoped that one day all of my symptoms would be gone... But I guess that this is as good as it's gonna get. I am grateful though because it... Knock on wood..... Could always be worse... Lol...

Hope this explained it.

Clo

Post Edited (clo2014) : 1/3/2023 6:40:21 PM (GMT-8)

Posted 1/3/2023 6:46 PM (GMT -8)
On the fistula side.... 85 percent of Crohn's disease patients fistula repair surgery fails. Add that to the coding on two surgeries and they say it's not worth the risk. My GI and Colorectal Surgeon.

Now my knee surgery guy... In his upper 30s?... Was like .. Yea... Let's Do This!!!
But my GI, CRS and infectious disease doctor have said "hold up.. not so fast... Did you forget about those other 2 times?" And the young doctor said it probably won't happen with him in charge... Yikes!!

I'm confused....

Flowersgal,

I see that too now... And I wonder which side to lean towards.

Clo
Posted 1/9/2023 1:00 PM (GMT -8)
I'm with you on the definition of remission. Sorry you're dealing with all this.
Posted 1/9/2023 8:40 PM (GMT -8)
Thanks Sara and all of you.

I sometimes feel like that scarry story we tell our kids as an example of things that could go wrong if you don't watch out. (As though any of us could have "watched out" for our IBD...)

I keep hoping for a day when I can say... Oh yeah, this is easy peasy.... But it seems as though my easy button is Missing In Action.

Tonight I'm just really tired of taking methotrexate that makes me puke for 2 days and gives me a migraine for another 24 hours. Almost 3 days a week of suffering... But I keep trying to tell myself 3 is less than 4. If I don't take it my symptoms are worse.... And the other meds make me even sicker. So the best of this worse case is the methotrexate.

I'm on all these meds and supplements, yet I'm still struggling. Even with a colostomy I still have "accidents" because of the disuse colitis and remaining diseased Hartman's pouch. I can barely walk.... And... And... And....

I just want the list to shrink instead of growing longer. I've been waiting and working for remission. I've been compliant with my treatment and still complete remission evades me and I feel like I am just surviving. I used to analyze information to plan on a way forward in business... And no matter how I move my information around I can't find a way that looks better than a "just surviving" strategy. Waiting for something.... Anything..... To help. Tonight I'm just so... Disheartened...

I can't even tell you the latest farm story I'm so.... Blah...

But tomorrow is another day. It will be better. Plus having you all here to vent to helps.

Thank you all.
Clo.
Posted 1/10/2023 9:42 AM (GMT -8)
That sounds absolutely awful. I'm so sorry.
Posted 1/10/2023 2:54 PM (GMT -8)
Big hugs to you Clo!

Wish I could make it better for you!
Posted 1/10/2023 2:57 PM (GMT -8)
Just wanted to chime in support, Clo. I learn a lot from everyone here and am so grateful for your presence. I wish there was a magic SIMPLIFY wand for all of us.
Posted 1/11/2023 3:45 PM (GMT -8)
Thanks for explaining that, Clo.

I am so sorry you are dealing with all of this. I know you see a lot of different docs, but maybe it would be worth it to see if you can get another opinion at some big medical center that has a good IBD department like maybe the Mayo Clinic or something like that. You shouldn't have to settle for living like this just because your current docs seem to have just thrown up their hands and given up. I agree with you that remission should mean no symptoms.

Hope you feel better soon!!
Posted 1/11/2023 9:20 PM (GMT -8)
Thanks guys for all your responses. I appreciate them and you all.

I was/am in a funk.

Funny enough we did the Mayo consult thing over the phone.(COVID) They looked over my records and then agreed with my Dallas team in everything. They said I could come up for a visit but..... So I didn't actually go in. I'm thinking about trying it all again... Although I am supposed to be going in to new doctors in Colorado so if there's an "oh no" moment I'll have medical care in Colorado while we are there this summer. Maybe they will have different suggestions.

I did sneak in visits to a place in Houston. (Last summer) They said I was getting excellent care in Dallas. They actually then reached out to my GI. I did get questions on my next Dallas GI visit... But they were all satisfied with my family is down there so I needed a plan B when I visit down there. Although with COVID I don't visit much. So that's made me sorta scared about trying to get another visit in someplace else.

I'll keep limping along. I'm sure it will get better.

Clo

My GI knows I'm terrified and have to have a plan B in place. plan A is bumpy enough.... I don't want anything else to mess with me.
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