# Anyone in this group still up?



## nini_mini

I have a few questions and things about blockages and strictures. 
And how i think that's what's been going on this past weekend and how I "know" my crohns is active even if the tests don't wanna show it. I know it's there, I feel it every day. 
Just need a chat for a few. 
Thanks


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## ronroush7

You know your body better than anyone else.  What tests have you had and how long ago?


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## tots

I am sorry your not feeling well. 

Rarely are my lab test positive for CD.

Here is what I have learned- trust yourself- if something doesnt feel right, chances they are not. You are your best advocate. Its ok to fight for what you think you need! 

I have had strictures before and think I am dealing with one now, what are your symptoms?
Or what leads you to believe you have one??

Lauren


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## nini_mini

ronroush7 said:


> You know your body better than anyone else.  What tests have you had and how long ago?


This is very true! And I haven't had any this year yet. I had a colonoscopy last March, and I had one of those pill cam's a couple months after and I switched Drs. So nothing recently my blood work last month and for December showed I'm anemic, my hemoglobin was 10 in December. And 11.3 I think last month but the rest was fine. I see my dr. The end of this month to get tests providing I can make it that long lol I'm over due for tests.


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## nini_mini

tots said:


> I am sorry your not feeling well.
> 
> Rarely are my lab test positive for CD.
> 
> Here is what I have learned- trust yourself- if something doesnt feel right, chances they are not. You are your best advocate. Its ok to fight for what you think you need!
> 
> I have had strictures before and think I am dealing with one now, what are your symptoms?
> Or what leads you to believe you have one??
> 
> Lauren


Hey tots! 

My labs don't show it either, the only thing that changes on them is my hemo. 
My crp has only been high once ever so my Drs. Quit looking at it lol

Hopefully my dr. Will run tests when I see him on the 28th. And be able to help somewhat. 

Strictures are my thing too! And I hate them. Last one I had landed me in the hospital. Fun. Where my anastomosis is (rlq) tends to get inflamed easily as well as my colon. I really wish I could throw it away haha. Anyway the past month or 2 I've felt it being swollen and can feel food go through it and it feels like razors hot ones. And when I lay down it feels like a ball is there and I can feel liquid build up and then slowly trickle through, last time it did that I had a stricture forming from repeated inflammation. I'm also feeling that in the middle under my scar but I'm thinking that could be adhesions maybe? Who knows. 

The other side (lower left colon area by my hip) well. A blockage formed Sunday night, and I thought it was partial (it wasn't), but yesterday I could barely move from the horrendous stabbing pain there, today was the same and I tried everything I could think of to move it and finally when I gave up, and was putting clothes away I felt it move and ran to the bathroom and it came out, a black ball of whatever followed by my normal watery stuff, and it was a blood bath when I flushed it. If it hadn't gone anywhere my butt would of been in the Er tomorrow. That crap effing hurts. Also, my nausea has been absolutely insane since Sunday. And I've thrown up a few times from it. And since Jan. I've lost a good bit of weight and I can hardly eat as it hurts to much and I'm too nauseous even with my nausea meds.  

My innerds are inflamed and hurt and are bleeding. Yippie :thumbdown:oo:
I need a drink! Lmao


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## tots

Wow-  it sounds just like how I am feeling. 
Usually my inflammation shows with an upper gi or ct scan.
I was on disability for three months and felt somewhat better- then back to work and I am back sliding!! I started with CD in the terminal ileum and a few yrs ago it moved to the left side- so CD with left sided colitis. I was bleeding at that point. Great fun!
I am on Remicade right now and in a little bit of a war with my Dr right now. I want remission I am not so sure he's really that into it! "We" were going to add Imuron after a "few" months and somehow his few months is a yr!! That made me so freaking mad! He said
this is my last hope- Imuron helps hold off the antibodies to Remicade- soo we aw not using it WHY?

This has to be one of the most under treated, un patient educated diseases ever- and I used to work for GI drs. 

that being said have a beer or a glass of wine.... its better than barium or contrast!!!

Lauren


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## ronroush7

I had an enterography early last year.  It showed I was in remission.  I kept having symptoms and they repeated it in November and it showed active inflammation.  So, I think you know your body better.  You said you had questions about blockages and strictures.  I had a blockage six years ago.


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## ronroush7

nini_mini said:


> Hey tots!
> 
> My labs don't show it either, the only thing that changes on them is my hemo.
> My crp has only been high once ever so my Drs. Quit looking at it lol
> 
> Hopefully my dr. Will run tests when I see him on the 28th. And be able to help somewhat.
> 
> Strictures are my thing too! And I hate them. Last one I had landed me in the hospital. Fun. Where my anastomosis is (rlq) tends to get inflamed easily as well as my colon. I really wish I could throw it away haha. Anyway the past month or 2 I've felt it being swollen and can feel food go through it and it feels like razors hot ones. And when I lay down it feels like a ball is there and I can feel liquid build up and then slowly trickle through, last time it did that I had a stricture forming from repeated inflammation. I'm also feeling that in the middle under my scar but I'm thinking that could be adhesions maybe? Who knows.
> 
> The other side (lower left colon area by my hip) well. A blockage formed Sunday night, and I thought it was partial (it wasn't), but yesterday I could barely move from the horrendous stabbing pain there, today was the same and I tried everything I could think of to move it and finally when I gave up, and was putting clothes away I felt it move and ran to the bathroom and it came out, a black ball of whatever followed by my normal watery stuff, and it was a blood bath when I flushed it. If it hadn't gone anywhere my butt would of been in the Er tomorrow. That crap effing hurts. Also, my nausea has been absolutely insane since Sunday. And I've thrown up a few times from it. And since Jan. I've lost a good bit of weight and I can hardly eat as it hurts to much and I'm too nauseous even with my nausea meds.
> 
> My innerds are inflamed and hurt and are bleeding. Yippie :thumbdown:oo:
> I need a drink! Lmao


Sounds like you need to go to the ER or see your doctor ASAP.  Let us know how you are.


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## ronroush7

tots said:


> Wow-  it sounds just like how I am feeling.
> Usually my inflammation shows with an upper gi or ct scan.
> I was on disability for three months and felt somewhat better- then back to work and I am back sliding!! I started with CD in the terminal ileum and a few yrs ago it moved to the left side- so CD with left sided colitis. I was bleeding at that point. Great fun!
> I am on Remicade right now and in a little bit of a war with my Dr right now. I want remission I am not so sure he's really that into it! "We" were going to add Imuron after a "few" months and somehow his few months is a yr!! That made me so freaking mad! He said
> this is my last hope- Imuron helps hold off the antibodies to Remicade- soo we aw not using it WHY?
> 
> This has to be one of the most under treated, un patient educated diseases ever- and I used to work for GI drs.
> 
> that being said have a beer or a glass of wine.... its better than barium or contrast!!!
> 
> Lauren


Lauren, can you get a second opinion?


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## nini_mini

We're in the same boat tots! 
I'm so over due on tests it's not funny, that's the only downside to having my gi being 2 hrs north of me, and that he's always busy, it's hard to get things done. 
Mine started in the ti also but that whole mess is gone and its continued there and spread to The rest of my colon so I guess it's now ileocolic. 

Shoot be happy you got disability, I've tried twice and I pass the crohns and arthritis requirements with flying colors and got denied both times. Sigh darn Florida lol

I'm on Remacade too, was at 10mgs but it kept giving me tonsillitis every time I got it. Had an anser ifx done and the levels in my blood were 33.7 the normal is 4. So it's been bumped down to 5 and I've stayed the same. It hasn't been working since June last year, and idk why but he just doesn't want me to switch off it. and I keep telling him, it's not working at all. I'm only staying out of the hospital because of pain killers. It's dumb, so I feel ya on the imuran. I've been saying "if it's not working why am I still getting it?" It makes no sense to me at all. 

Yes, i think so too. Under treated for sure. It's so complex, making Dx hard to do when it doesn't show up on tests like it "normally" should. It's frustrating. 

Hahaha yesss! I'm all for it!  :drink::cheerss:


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## nini_mini

ronroush7 said:


> Sounds like you need to go to the ER or see your doctor ASAP.  Let us know how you are.


Hey Ron!

I seriously would of if the blockage hadn't moved. 
What did your blockage feel like?

I got in with my for the 28th of this month. That's the earliest I could get in sadly. Definitely going to get many many tests. This is nuts, I know it's there, I'm not crazy lol I just need it to show up on them for once. My colon likes to be camera shy. -__- lol

I'm currently waiting for my oxycodone to kick in, and laying down with a heating pad and my pillow pet around my abdomen.. Mind you I'm still in a lot of pain but not as much as earlier. 

How are you feeling? Still having mild pains?


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## tots

Ron- I moved to Texas in 2000, transferred my records to one of the "good docs" in town, he took me off all meds to "see what happens" to make sure I really had CD. I had already been Dx'd and treated years earlier. So off to another Dr here in Texas- he gave me a prescription for Valium- that I tore up and handed back to him. I said I am not a drug seeker keep it. So 1o untreated years later- it had spread 8 day hosp stay and I have been out of remission for 5 yrs. So to answer your question- I have been down that road and it was bumpy !!

nini_mini- Have you ever had another medication at the same time as your Remicade?


Snap- tornado warning on its way!! gonna be a loooong night! 

Lauren


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## ronroush7

nini_mini said:


> Hey Ron!
> 
> I seriously would of if the blockage hadn't moved.
> What did your blockage feel like?
> 
> I got in with my for the 28th of this month. That's the earliest I could get in sadly. Definitely going to get many many tests. This is nuts, I know it's there, I'm not crazy lol I just need it to show up on them for once. My colon likes to be camera shy. -__- lol
> 
> I'm currently waiting for my oxycodone to kick in, and laying down with a heating pad and my pillow pet around my abdomen.. Mind you I'm still in a lot of pain but not as much as earlier.
> 
> How are you feeling? Still having mild pains?


When I had the blockage,  I would feel up quickly and had trouble finishing meals.  I eventually had to have a resection.  Right now, I get random pains and the doctor isn't sure but said it could be scar tissue or adhesions.  I built up a reaction to Remicade.  I was on Stelara but they are getting ready to put me on Humira soon.


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## ronroush7

nini_mini said:


> Hey Ron!
> 
> I seriously would of if the blockage hadn't moved.
> What did your blockage feel like?
> 
> I got in with my for the 28th of this month. That's the earliest I could get in sadly. Definitely going to get many many tests. This is nuts, I know it's there, I'm not crazy lol I just need it to show up on them for once. My colon likes to be camera shy. -__- lol
> 
> I'm currently waiting for my oxycodone to kick in, and laying down with a heating pad and my pillow pet around my abdomen.. Mind you I'm still in a lot of pain but not as much as earlier.
> 
> How are you feeling? Still having mild pains?


Why can't you still visit the ER even though the blockage has moved?


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## nini_mini

ronroush7 said:


> When I had the blockage,  I would feel up quickly and had trouble finishing meals.  I eventually had to have a resection.  Right now, I get random pains and the doctor isn't sure but said it could be scar tissue or adhesions.  I built up a reaction to Remicade.  I was on Stelara but they are getting ready to put me on Humira soon.


I get full easily too but that's normal for me. 
I've heard adhesions can cause blockages too. The adhesion wraps itself around the bowel and boom. Or something like that. 
Stelara got approved for cd? Didn't know that. My gi is going back and forth between humira or tysabri, he's iffy on the humira because it's the same base as remi, anti tnf and I don't respond well to them plus add in my awful history with injection site reactions and it's not a good idea to me, I'd rather get infused with something through my port lol. 
Wish you luck!


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## nini_mini

ronroush7 said:


> Why can't you still visit the ER even though the blockage has moved?


I could but the last time I went, they said and I quote "you no longer have an active gi here, we can't do anything for you. Your best bet is to call your dr and see if you can see him this week." 

Real great Drs. There lol so while yes, I could, I don't have the patience or nerve to deal with rude people at the moment.
 Also, I don't want to be given morphine iv (it causes even worse stomach cramps in me) just because they don't feel like getting the dilaudid because it's "too strong". And I'm allergic to toradol (the other iv pain stuff), and the Norco makes me throw up.  So I get frustrated and they send me home in a few hrs.


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## nini_mini

tots said:


> Ron- I moved to Texas in 2000, transferred my records to one of the "good docs" in town, he took me off all meds to "see what happens" to make sure I really had CD. I had already been Dx'd and treated years earlier. So off to another Dr here in Texas- he gave me a prescription for Valium- that I tore up and handed back to him. I said I am not a drug seeker keep it. So 1o untreated years later- it had spread 8 day hosp stay and I have been out of remission for 5 yrs. So to answer your question- I have been down that road and it was bumpy !!
> 
> nini_mini- Have you ever had another medication at the same time as your Remicade?
> 
> 
> Snap- tornado warning on its way!! gonna be a loooong night!
> 
> Lauren


Lordy that sounds awful Lauren :/ sorry you had to go through all that! 
Yes I have, I've been on enticort with it, I've been on methotrexate injections with it, um countless courses of prednisolone and dexamethisone? And something else but the name escapes me as it was a while ago. Oh! And many many courses of antibiotics when I'd get sick lol

Hope things weren't to bad overnight. The weather channel said lots of rain over there till sat or Sunday? And the threat of severe storms. Stay safe!


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## tots

That was a rough night with the weather. I do love the thunder and lightening as long as the threat of tornadoes is a non issue!

I just wish that my Dr would get a grip and treat this disease the way its treating me! Lets kick its a**. Remicade alone is not working.


Lauren


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## nini_mini

Sounds like it! I guess as long as the sirens didnt go off your good. Lol 

I hear you on that! Remi hasnt been doing anything for me since last year, the only thing it does to me is make me sick, with bad Tonsillitis or a nasty cold that takes forever to go away. Lol my rheumy and i tried to change it twice for those reason'sand my gi said theres to much in your system, if we knock it down to 5mgs it'll bring the levels down and work better......... riiiight. Lol has done a damn thing at the lower dose, ive been narrowly avoiding the er for the past 3 or 4 months solely from pain killers. Whicj in itself isnt good but hey, I'll take it. Lol


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## ronroush7

nini_mini said:


> Sounds like it! I guess as long as the sirens didnt go off your good. Lol
> 
> I hear you on that! Remi hasnt been doing anything for me since last year, the only thing it does to me is make me sick, with bad Tonsillitis or a nasty cold that takes forever to go away. Lol my rheumy and i tried to change it twice for those reason'sand my gi said theres to much in your system, if we knock it down to 5mgs it'll bring the levels down and work better......... riiiight. Lol has done a damn thing at the lower dose, ive been narrowly avoiding the er for the past 3 or 4 months solely from pain killers. Whicj in itself isnt good but hey, I'll take it. Lol


I hope you get it straightened out with the Remicade level.


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## tots

I will say my joint pain is decreased with the Remicade, although I already have a few fingers that are so "jacked up". I just want enough mediation to kick me into remission. I know it seems like I am asking a lot !!

Lauren


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## ronroush7

TheUnusedGamer said:


> I need help :sign0085:


We are here for you.


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## nini_mini

@tots.yeah, remi helps my joints for 2 weeks and then dies off.  I wished it worked period.


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## nini_mini

Soooo, I've done something dumb. Maybe, I think it's fine. My gi might kill me Monday though.  I've decided to cancel my remicade for tomorrow. As I don't have the time this month to do it, along with the fact that it's not working. I don't see the point in having something infused into me that isn't working and only makes me sick after I get it. 
At least this way if it is doing something I should notice a difference in how I feel right?


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## ronroush7

nini_mini said:


> Soooo, I've done something dumb. Maybe, I think it's fine. My gi might kill me Monday though.  I've decided to cancel my remicade for tomorrow. As I don't have the time this month to do it, along with the fact that it's not working. I don't see the point in having something infused into me that isn't working and only makes me sick after I get it.
> At least this way if it is doing something I should notice a difference in how I feel right?


Does your GI know it isn't working? Talk with him/her about being put on some medicine in place of it.


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## nini_mini

Ohh he's well aware of it. Lol I was supposed to be switched to something else last year but my ifx said the remicade levels in my blood were 33.7 or close to that and the normal is 4. So he wanted to see if dropping the does to 5mg every 8wks would help. Instead of the 10mgs every 6. All the low dose has done is make me continuously sick. From Jan. 28th (got remi the 27th) to the 7th ish of feb I was sick, with 3 different things. One an upper respiratory infection, the second was a nasty throat thing, and the last was really bad bronchitis and pleurisy. I had 3 courses of antibiotics in that time. It was insane. I just kept getting sicker and sicker. 
I've also had CDIFF last year from antibiotics. So if in the month of April or beginning of May I get it again I won't be surprised


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## ronroush7

I hope you are well soon.


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## nini_mini

Thanks Ron! Same for you!


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