Going into hospital:

Hi all,

As some of you may remember I posted about IV steroids awhile back but I have been putting off going into the hospital as an in-patient hoping to see some improvement in my condition. I even went so far as to see a Chinese doctor but unfortunately that didn't yield any results, so I have been booked back on the ward for a 5 day steroid IV treatment.

I feel very discouraged overall because I can't really see any positive outcome from this. My last experience of steroids left me with long term oral candida (and also tonsil stones); which is still yet to be resolved. This also came ontop of hair thinning, aches, blood sugar drops, suicidal thoughts etc... So the prospect of going into hospital to have high dosage steroids still seems absurd, even if people say IV is a different delivery method, I'll still be dumped with months of oral steroids to taper from what I understand?

And that isn't even the end in itself, from there it looks like either Remicade or surgery.. neither of which seem like options that will give me any quality of life. The prospects just seem very bleak for any real return to normal life.

Guess I just wanted to vent.

Thanks.

Good luck. I know surgery sounds grim... I didn't want to do it either... Now that it's in the past, I can truly say that life after surgery is worlds better than a life worrying about UC and flare ups. I was in a long flare up that was relentless and unresponsive to treatment at the time I had surgery. I always had this picture of life after surgery, like it's compromised, but I can tell you that looking back, life with UC was compromised. Taking UC drugs and being tied to doctors and hospitals is limiting. Steroids and the side effects are limiting. The cost of treatment is limiting. Now my life is much better :) I take ZERO drugs. I even got an IUD so i don't need to take oral pills. Although I go to the bathroom more often, I can go 6 hours without the bathroom if I need to. Many days I am out and about all day and I don't even think about a bathroom. When I do need one, I can wait if necessary. It's very liberating.

Renegade,

What have you done to treat the Thrush?

I had a bad case of it too from all the antibiotics that I take; it took me a while but I've overcome it with diet modification (cutting out all carbs), I switched probiotics from Cullterelle to Florastor. My nutritionist and GI both said that Florastor works very well at treating Thrush. I also drank Apple Cider vinegar and mixed with water.

I got it all under control and now only take Florastor to prevent the Thrush. It took me 5 or 6 months of battling the Thrush before I got it fixed.

The Thrush symptoms mimicked my GI issues, things are better now that I got it under control.

quality of life with remicade is a billion times better than quality of life on steroids.
steroid usage is much more dangerous than remicade

I am not sure why your doctor told you it would take three years to fully recover from surgery. that is preposterous. ask your gp where he got his information from? because it sounds like he is mixing something up or you misunderstood him.

I was offered biologics or surgery and thankfully remicade was the key to me getting my life back. I went from about 30+ BMs (while in IV steroids) and being unable to stand becuase I was so weak and malnourished to being discharged about 4 days after my first remicade treatment
my crp went from 140 ish to 70 ish overnight and my BMs went down to about 10-20

just a few months later I have 0-4, mostly formed BMs, blood is not too common anymore and the mucous is not as frequent or as much

Renegade88 said...
Thank you for your kind prayers.

I don't think anyone could ever convince me on surgery. I respect that people have their reasons for opting for it, but I can't see it myself. My GP told me that'd take 3 years to 'return to normal' after surgery and frankly another 3 gruelling years I don't have in me. I'd rather the peace of death.

As for the thrush, I went through 3 bottles of Nystatin; tried Acidophilus and VSL#3, ACV, garlic, cutting out sugar and so on.. I have seen some improvement, but I feel like my throat has become as out of whack and problematic as my UC. It even bleeds... Go figure. I wish someone would have told me about tonsil stones sooner though.. removing those has to have helped.

Nystatin is not very effective in treating Recurring Thrush, I had to go on Fluconazole a few times which will knock most of it out but it kept returning so I had to add the Florastor. The strain of yeast/bacteria used in Florastor is the most effective probiotic on the market. At one point the Thrush made my mouth/tongue bleed too.

Experiencing surgery myself 3 years isn't accurate at all, you will be healthy and recovered in months. Maybe a full year to be FULLY recovered but that is really stretching it. Most of my surgeries were a month or two until I felt fully healed and back to my normal routine.

Renegade88 said...
Thank you for your kind prayers.

I don't think anyone could ever convince me on surgery. I respect that people have their reasons for opting for it, but I can't see it myself. My GP told me that'd take 3 years to 'return to normal' after surgery and frankly another 3 gruelling years I don't have in me. I'd rather the peace of death.

As for the thrush, I went through 3 bottles of Nystatin; tried Acidophilus and VSL#3, ACV, garlic, cutting out sugar and so on.. I have seen some improvement, but I feel like my throat has become as out of whack and problematic as my UC. It even bleeds... Go figure. I wish someone would have told me about tonsil stones sooner though.. removing those has to have helped.

You can trust me when I say that I felt the same way. I don't think anyone goes into surgery gung-ho. Everyone believes they are the last person this could happen to and that they will do anything and everything before surgery, that's all fine and well, until you've done everything and your flare up is only getting worse.

I had 3 steps, which is the worst case scenario. I was able to get back to normal life within 2 weeks of step 1. I lived 12 weeks with the ileostomy, it was pretty easy once you get the hang of it. I was back 2 life 2 weeks after step 2 and living pretty normally with my loop ileo. After step 3, I was back to normal life after about a week. I am now 2 months, and yes, I am still adjusting, but, after 2 weeks I could see that I made a very good decision. I was no longer running to the bathroom and hoping to make it. No more blood. No more cramping. No more 10 bloody, painful trips a day, no more pressure in the rectum... I see slow improvements all the time. My surgeon said 1 year is probably when you will fully know your result. I am about 2 months and I am very happy with where I am. I look forward to continuing to improve. The picture your doctor painted was far from the truth. I am living way better than I have in years and full recovery doesn't require years.

You are going to have to make a choice it sounds like, drugs or surgery. The drugs you need to consider are the ones you're the most against. Toward the end, I realized that the steroids were actually the worst of them all.

You should definitely get a 2nd opinion and also consult a surgeon. You are not making any commitment by doing so. You can at least get a more accurate account of what to expect.

Please try IVIG...readily available in the hospital and very likely will work!