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Going downhill

Grant

Grant

Well I've been on Humira for nearly 5yrs, but suddenly it seems to have become ineffective. Basically I'm having the sort of diarrhoea that is pure liquid, several times a day & 2 or 3 times @ night. My fissure's are extremely painfull, my motions are often bloody, I'm getting terrible cramp in my feet & shins because of the loss of body salts. (been using dioralyte for that). Feel utterly listless & now have a reasonably strong pain about 3" or 4" in from my right hip. It feels @ times as though my colon or whats left of it is being completely bypassed.I have a fistulae but it hasn't given me too much bother until now.
The good news is I'm having a colonoscopy on Thursday but I'm very very concerned. With my history of strictures I cant help but think here we go again.
I hate Crohns.
Rgds
Grant
 
ronroush7

ronroush7

I hate it too. I was on cimzia. At first it was good. Then it failed. I ended up with an allergic reaction to remicade. Now I am on Stelara.
 
A ja

A ja

Grant said:
Well I've been on Humira for nearly 5yrs, but suddenly it seems to have become ineffective. Basically I'm having the sort of diarrhoea that is pure liquid, several times a day & 2 or 3 times @ night. My fissure's are extremely painfull, my motions are often bloody, I'm getting terrible cramp in my feet & shins because of the loss of body salts. (been using dioralyte for that). Feel utterly listless & now have a reasonably strong pain about 3" or 4" in from my right hip. It feels @ times as though my colon or whats left of it is being completely bypassed.I have a fistulae but it hasn't given me too much bother until now.
The good news is I'm having a colonoscopy on Thursday but I'm very very concerned. With my history of strictures I cant help but think here we go again.
I hate Crohns.
Rgds
Grant
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Hey Grant,
Surr sounds like you are having a horrible time there [emoji29] wishing you good luck with the colonoscopy and sending you somd virtual hugs from Switzerland...
 
Grant

Grant

Well I've taken my last sachet of picolax prep, colonoscopy tomorrow. Pleased I've managed to drink all 3 without vomiting. :ybiggrin:
Grant
 
A ja

A ja

Grant said:
Well I've taken my last sachet of picolax prep, colonoscopy tomorrow. Pleased I've managed to drink all 3 without vomiting. :ybiggrin:
Grant
Click to expand...
Hhh omg i think drinking the 3 liters of prep were the worst 5 hours of my whole hospital stay...and quite frankly made it to the top 5 most horrible moments of my life 😅lol u can do it! 😊
 
Grant

Grant

A ja said:
Hhh omg i think drinking the 3 liters of prep were the worst 5 hours of my whole hospital stay...and quite frankly made it to the top 5 most horrible moments of my life 😅lol u can do it! 😊
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A ja, Not 3 litres thankfully. 3 x glasses of water with a picolax sachet in over a 5 1/2 hour period. Plus plenty of clear fluid in between. Looks like I'm "clear" already.
Thanks for the reply.
Best Wishes
Grant
 
Grant

Grant

Colonoscopy is done, very uncomfortable this time. I've got ulcers in my rectum & the anastamosis surgical site is very inflamed & ulcerated. So I'm on Budesonide & an ultrasound is being lined up.
Grant
 
Grant

Grant

Well its now 10days since I started Budesonide (Entocort). I feel the soreness in my Rectum is much improved but the Diarrhoea is terrible in the mornings. Absolutely no improvement on that side of things, really feel very low & exhausted atm.
Best Wishes
Grant
 
irishgal

irishgal

Have you been tested for MAP? Humira and Remicade both failed for me - Pentasa as well. Went on AMAT and have been Crohn's free for 10 months. I got tested for MAP first and read all of the research, then since I was so sick, gave it a try. So glad I did. BTW - resections are horrible. I feel your pain and hope you get some relief soon! If I never have another colonoscopy it will still be too soon. I can help with some MAP/AMAT resources if you're interested!
 
Grant

Grant

irishgal said:
Have you been tested for MAP? Humira and Remicade both failed for me - Pentasa as well. Went on AMAT and have been Crohn's free for 10 months. I got tested for MAP first and read all of the research, then since I was so sick, gave it a try. So glad I did. BTW - resections are horrible. I feel your pain and hope you get some relief soon! If I never have another colonoscopy it will still be too soon. I can help with some MAP/AMAT resources if you're interested!
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Hi irishgal, not tested but I have been put on Metronidazole in the past. The problem is it gives me such terrible diarrhoea & makes me feel completely grim.
The good news is I've had the best day for weeks & my belly seems to be somewhat settled. Now if I have another reasonable day tomorrow then maybe just maybe a corner has been turned, albeit on the back of Entocort.
Rgds
Grant
 
irishgal

irishgal

Grant - so glad that you getting some relief!! Aren't those good days the best. Metronidazole always worked wonders for me, which is part of the reason I thought AMAT would also work. Such a strange disease, with each patient having their own nuances. Just glad you're feeling better, no matter what it is that's working!
 
Grant

Grant

Well sadly that didn't last long. 2 reasonable days & back to square one. So today I've been on the phone to my Gastro Specialist Nurse, she's speaking to the Consultant tomorrow with a possibility of swapping the Entocort to Pred & a much higher dose. Now I dont know whether to laugh or cry @ this point as i already have a small osteopenia in my left hip. Very depressing tbh. But I need something as i'm starting to lose weight quickly.
Grant
 
irishgal

irishgal

Oh Grant - I'm so very sorry that your health did not last. Crohn's is so cruel. I've many times felt like the ski jumper on the old Intro to the TV show The Wide World of Sports. The announcer says The thrill of victory! as he has a beautiful jump, but then it changes to And the agony of defeat when he doesn't stick the landing and tumbles in a heap down the hill. I feel like that ski jumper is my life with Crohns. I'm doing so well, but then relapse and tumble down the hill of health. it gets harder and harder to recover after each tumble, physically AND mentally.

I know I've mentioned AntiMAP as an option before, so won't harp on it. FMT has also worked quite well for others on here too, though I know it's not always accessible. One person on here (Himoura) even used some type of threelac enema concoction in place of FMT with amazing results. I truly hope that your doc will be able to get your disease back under control ASAP and you will be well soon. Virtual hug!!!
 
Grant

Grant

Back on Pred after a very longtime away from it. 40mg starting dose & reduce by 5mg every week. 2 days in & for the first time in ages no diarrohea. Wow. Poor nights sleep with Pred though, may have to take a sleeping tablet now & again but altogether feeling better, much better. I will ask the Consultant about a bone density scan when I've finished the course.
Rgds
Grant
 
Grant

Grant

Down to 30mg Pred now & having some bad days again, ultrasound scan last week detected inflammation & "bowel loops".
Worrying.
Grant
 
Grant

Grant

I'm now on 20mg Prednisolone & starting to have some not insignificant discomfort. I've jabbed with Humira today but I feel its run its course after nearly 5 yrs. My Specialist has mentioned Infliximab/Remicade before & if its offered I'm going to go for it. This is as bad a flare I've had & its showing no signs of easing, in fact its going the other way. Desperate to stay away from the Surgeons so I'm hoping that if thats what we decide I can get on it quickly because any delays I feel will just cause irreversible damage & we all know how that ends up-on the operating table.
Rgds
Grant
 
Grant

Grant

hi littlemissh, no I haven't & after speaking to my Specialist today he doesn't think that line is worth pursuing. I've been on Humira for 4yrs 11mths & 5 yrs appears to be about the limit on it. I feel whetever good I was getting has slowly faded away.
So Infliximab for me & hopefully soon because any delays could see me hospitalized & I'm desperate to avoid that tbh.
He also told me to discontinue Questran & use Colesevelam instead due to the awul bloating I've been getting.
Best Wishes
Grant
 
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Grant

Grant

Stuck on 15mg of Pred. Cant go any lower until I start Infliximab on the 30th. My mornings are dire, terrible diarrhea & headaches that leave me feeling groggy & nauseous.
And to cap it all today I've had a bit of a row with my elderly father whose moaning about a problem with his MP3, I'm afraid I reacted badly. Sort of a case of "if thats all you've got to worry about it then really I dont want to hear it".
Not like me but I feel so very low atm.
Grant:pale:
 
Grant

Grant

I've switched back to Questran Light from Colesevelam (Cholestagel). Getting the most appalling headaches because of it & also Bile Diarrhoea. Made my mornings miserable tbh.
Rgds
Grant
 
ronroush7

ronroush7

Grant said:
I've switched back to Questran Light from Colesevelam (Cholestagel). Getting the most appalling headaches because of it & also Bile Diarrhoea. Made my mornings miserable tbh.
Rgds
Grant
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Have you contacted your doctor about what is going on?
 
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