I broke down on the way to work today...

I'm not much help as far as telling you what the next best options are to get your condition under control, but I will tell you that it's okay to break down and have a good cry! I've only been dealing with this since last March but have been in pretty serious condition since mid July...and I can't tell you how often I've broken down, full on pity party for myself. This is a scary disease, and it seems to be a very lonely disease since even those you can share your experiences may have very different scenarios. I'm about your age, and I think that is usually the cause of my crying....I just can't fathom living the rest of my life like this. I think we all have good days (and hopefully months and years) and right now you aren't having one....so cry it out. You'll get better!

Aww that's awful. We've all been there before, extremely frustrated and completely fed up with uc. If I was in your situation, I'd call your gastroenterologist and describe the blood, urgency, and other symptoms you're experiencing. If the salafolk suppository bothers you, maybe the salafolk enema would be better (it goes further and has more medication)? I'd try them nightly. Maybe alternative with a steroid suppository or enema (steroid in morning, salafolk at night). Ask your gastroenterologist for a prescription, and your options.

If maxing out Olsalazine and salofalk enema isn't enough then I'd strongly consider immunomodulators (Imuran, 6mp, aza). One way or another, you need a plan to give uc the one-two-punch and get uc under control.

I think it's a good idea to go on anti-fungals after immunosuppressants. Might even help with UC. I second the suggestion of fibre such as psyllium seed.

aimz it is important to have some hope. In Shawshank Redemption Andy tells Red in a letter that hope is a good thing 'perhaps the best of things'.

There are really good drugs, a new generation of them coming out of the next 10 years that will make a difference. I from UC suffered a paralyzing stroke, suffered a 'ruptured' bicep that took 6 months to heal after surgery and many other things from relying prednisone, high dose prednisone.

UC is a lot to handle just do not ever give up hope for better days :)

I think all gastroenterologists should be required to drink a full colonoscopy prep and the immediately asked to hop in a car and drive two hours. Maybe then, they might start to grasp what we go through, if not at least it'd be amusing lol.

The blood, increased bm frequency, and gut rumblings are all signs of the start of a flareup. I'd e-mail the gastroenterologist/nurse assistant and tell her/him in no uncertain terms. If you feel you need a prescription then ask for it. You don't necessarily need an office visit appointment to get a new treatment in place.

Ipoop I agree.

Aimz, prednisone is a monster it makes us nuts when we take it and nuttier when we stop it. It is clear you needed it to stop the inflamation but you cannot remain in it as it's unsafe. I would advice imuran or 6mp and switching to an enema instead of suppositories. Also, maybe use cortifoam for a month to help give you some relief while the imuran kicks in. ( because of rapid onset and smell I would get checked for c. Diff but because you tapered pred it's probably that and not c. Diff)
The anxiety and isolation is a part of UC that is not addressed enough. I don't know why but that is probably one of the hardest things for us and docs rarely address it adequately.
When I was freaking out on prednisone they took me off to give me iv solu medrol because the po wasn't enough. And I was still having terrible anxiety. One GI fellow who I am very grateful for, stayed behind in my room and told me that it can take a week to get all the prednisone out of the system and the anxiety and nutiness would go away gradually. He also did slow breathing with me and it really helped calm me down ( I don't want more Ativan)
Instead of tapering back to oral prednisone they had me go to oral solu medrol ( medrol) and the anxiety was not as bad. So if they do but you back on pred maybe ask if you can do medrol instead.
I am sorry you are going through this is really stinks.

Please please try Vsl 3!!!! It saved me almost immediately from grumbly tummy and other issues. Amazon has it cheapest. Best to you

aimz said...

aguywithuc said...
aimz it is important to have some hope. In Shawshank Redemption Andy tells Red in a letter that hope is a good thing 'perhaps the best of things'.

That's probably one of my favourite movies!

Thank you all for your advice - I will try the various supplements, I have some enemas at home so I'll try them instead of the suppositories..

...
If my doctor(s) won't listen what should I do?

I know what it is like. I went to the hospital for prednisone induced major stroke and out of control flare down to 130 lbs. Both times I could see my x-terra out in the parking and wondered if I was going to get better and get the hell out. Of course the stroke visit was mostly spent in the ICU and the only thing I saw was my ex-wife bringing me real food. But I did get out and I did drive off in that truck every time. I stopped going there and I stopped flaring for 2 years and then flared a lot.

A guy hit me head on putting me back in the hospital while flaring and I had had it with my GP who began pushing biologics. I moved on to a gal that sounded just like him. She was sending biologics to my house after I told her not to. Then I had my "GP" help. Real nice guy like a tall Ben Carson and had used him for years. I explained what the GP's were doing to me and he was so understanding. He had me sign a 'Directing my own healthcare' document and wrote scripts for Sulfasalzine, Asacol-HD and prednisone when my experimentation failed. I have gone back to GP-2 the gal who would either dispense biologics or tell me to 'find someone else'. Now I have shown her my immaculate blood labs and convinced her that Sulfasalazine is all I need. So I will disconnect the burden from my GP now and continue to adhere closely to what works for me with very little experimentation.

Some of these may work for you but once flaring you have to slow down the GI track with whatever you can to allow antinflammatories to work ( Immodium, Mebeverine, etc ).

Getting off prednisone-
- Qing Dai
- MSM
- DHEA
- Salmon

Ongoing remission
- Psyllium seed powder daily it heals the gut lining
- no dairy no wheat
- Sulfasalazine + Folic Acid, or ASACOL HD ( SZ is more effective for me )
- no simple sugars
- slower digesting starches or vegetables
- boiled eggs
- sunbutter
- spinach
- whole chicken to go from sprouts
- minute Potassium Sorbate for mold overgrowth
- Olive leaf extract

For sleep -
- Magnesium taurate
- Restoral
- Soma ( some guy calls me thats all I know )

BTW my two highest earning years were while having UC which I got in 2006 around 45 years of age. Good things can still happen.

You have to take control of your health and never give up.

Currently I am still raising my daughter by myself and driving 2-4 hours per day for the last 6 months flare free. Sat in huge board meeting for nearly 2 hours today and so happy none of the UC symptoms are present.

Post Edited (aguywithuc) : 10/30/2015 6:37:31 PM (GMT-6)

Go get some nicotine patches, try that before you start smoking again! I would head straight to A&E if I were you, things sound pretty miserable. Hang in there!

Hello everyone.

Well, I had the rest of the week off work last week, Tuesday was agony, I passed a lot of blood and went to A&E. I was given an appointment on Wednesday to see the head of Gastro. He was astounded I've never had a full colonoscopy since being diagnosed, only sigs, so he's personally going to do one, plus a pelvic MRI (I've had an MRE but apparently not the same!). He's also put me back on Pred (I cried when he said that) and started me on imuran.

I'm back at work today, though was 45 minutes late and am not really feeling 'in the room', I'm on a liquid diet (soups and shakes), and am still passing pretty much just blood, and have gripey pain and cramps right ot left of my abdomen.. I'm at such a loss as to what to do - I guess just wait for the pred and imuran to kick in?

Thank you so much for your support - I even managed to stay away from cigarettes, for the time being at least! But nicotine patches could be a good idea..!

Thanks iPoop. It's been a battle that's for sure..

I'm used to the pred working by now, so I'm hoping it will kick in now. The Doc only prescribed it down to 20mg for one month, nothing after that, so I'll have to make sure he didn't just 'forget' to taper me fully..

the pain is back this afternoon which isn't great, and the GI Prof at work says I should be at home, though I don't think work will wear that!

I'm not sure I fancy facing pred over Christmas.. I was excited to be off it in time for my birthday, now it looks like a 'long-term' fix while the imuran kicks in. What a nightmare this illness is :-(

Aimz,

Imuran is a good, well-studied drug. The down-side of imuran is that it takes a while for it to work. My best remission was when I was on 6-mp (very similar to imuran).

Did you talk to the GI about Remicade or another biological? You would probably see an improvement to your condition sooner with biological in the 2-3+ months that it would take imuran to kick-in.

Some people do better on both a biological and imuran together, they treat the UC together and the imuran help to prevent anti-bodies to the biological from building up in your body.

I see that you suffer from depression and Pred can definitely make things worse. You might want to add a hydrocortisione enema to your arsenal since it is less absorbed in your system and maybe you could lower your Pred dosage.