CT Scan determines my fate

[misterquin]

So for the last week or so, I've been experiencing symptoms not typical of a flare up. I will have little pain throughout the day and don't have constant diarrhea. But, I have these "episodes" after a day or two of not going where I have sudden, intense cramping, pain, and nausea and after a bowel movement I feel better. There's no blood whatsoever.

My doc recommended to stay with my current treatment and I felt this was worrying so got a second opinion. The second doc basically said "surgery seems likely" and that I seem to have a blockage. He said i would probably have to have an ileostomy based on my symptoms. He recommended a CT Scan to see for sure, but he feels my treatment is maximized. Immediately, I panicked. I knew it would be a possibility, but so soon!? I'm 19 years old and hoped surgery would be far in my future.

Has anyone had these symptoms and had them fixed without surgery? I've been trying to stay strong, but I couldn't help but cry. Any thoughts or encouragements are greatly appreciated.

 

[Edippold]

Hey Alex,

I am 21 and just had surgery in July. When I found out, I about s*** my pants(which is hard enough not to do- haha!). Anyways, even though it totally sucked and was painful, not going to lie, I feel so great now. I actually have color in my face and can eat and have energy to clean, and walk and do all the stuff i missed. I can eat lettuce and not die! Plus, my Dr. put me on Humira and said that if all goes to plan I should be surgery free for 10 years. I will happily take those 10 years of possible remission. Think positive

 

[misterquin]

Thanks for the encouragement! Is it awkward having it? Is it noticeable when you have it on?

 

[Crohn's 35]

Hey Alex, not sure I welcomed you here, so :welcome:... sorry you had to seek another Gi but I have had your symptoms and just to assure you my first surgery gave me many years of bliss...but I abused it by smoking and the odd alcholic drink... very dumb on my part, but narrowing is dangerous,and if you have a full blockage which is what I have had many times, you will beg for surgery! I know it is scary but you are young and most likely being your first surgery they usually do laproscopic surgery, was less invasive and heal quicker. Another young girl just had surgery (Dallies daughter) not long ago and she is already back in school!

Hang in there, hope you make the decision that is right for you!

 

[Dallies]

Hiya Alex, Meg had a small bowel resection it was the only option for her, at the time very surgery but she is remission now and doing great. Loads of support your way. D xxx

Hiya Eddipold, would you like to post on, My Story so that we can welcome you properly xxx

 

[misterquin]

Thank you everyone for the support and kindness.

Well, good news and bad news I guess. The CT Scan came back showing no blockage or anything requiring immediate surgery! The bad news is that my inflammation has gotten worse and I'm on basically maximum therapy. The doc increased my prednisone to 40mg and is giving me cipro to hopefully reduce the inflammation. If this doesn't work, we will have to discuss surgery. I'm praying for this to get better without surgery.

 

[Crohn's 35]

Ohhhhhh Alex, sorry you have it worse, but true no narrowing is great. 40m,g of pred should work and the cipro should too. If you wean off the pred, eventually you will with Cipro as most docs only have it prescribed for 2 weeks, I am surprised he didnt give you flagyl too.

I know what you are thinking...surgery...but it could give you many years of remission and have your life back. ( I hate saying it is "positive" everyone knows I hate that word lol) but it could in your positive future. Make sense? Hope you feel better soon. Make sure you take the Cipro and the times of avoiding calcium or dairy products, because it cancels it out. Also best on an empty stomach. Trust me I know I am on Cipro and odd Flagyl too, and have on and off 7 years, it seems to be the only thing that helps the inflammation. Keep us posted , helps us too.

 

[misterquin]

You're right pen. I've been thinking about it and if surgery is what I need for relief from all of this then I'm ready for it. But at the same time, if it can be avoided, then I'd prefer that by far!! But I'm sure that goes without saying.

Thank you for the tips. Do you mean calcium supplements or anything with calcium in it? I'm not sure why he didn't give me flagyl. Last time i was on it, it gave me normal stool. Should I ask my doctor if flagyl might help?

 

[Crohns08]

misterquin, I know how you feel, I dread the thought of potential surgeries. It's good that you have no narrowing, but bad that the inflammation has gotten worse. Hopefully the new drugs will work for you. Right now I'm on 40 mg of prednisone and I've been doing pretty crappy. Hey if the flagyl helps get you normal stools, I'd ask why he didn't prescribe it, maybe he has a reason for it? You should definitely ask though.

 

[Entchen]

Hey Alex: Hope the meds work so you can avoid surgery!!!! Sending healing thoughts your way.

 

[misterquin]

Thank you guys. I'm gonna fight this until surgery is the only option left! I think this round of antibiotics will be helpful for the inflammation.

 

[Crohn's 35]

Calcium and Vitamin D3 is sooooooooo important, especially us Crohnies because most of us lack it. Calcium in your bones is robbed by the Pred and Zantac, little hidden things we learn on here. Another American Crohnie says there is a product that we have in Canada which is called Nature's bounty, most supplements are liquid filled which is easier to digest and absorb. We have poor absorption even if you dont have an any surgery done, and some have it collected in areas and stays there. B12 should be sublingual and is dissolved under the tongue, a crucial part of Crohns. Check out http://www.naturesbounty.com/ . Here in Canada they were on sale half price so you bet I stocked up. My healthy husband and daughter take them too.

 

[Astra]

Hiya Alex

Just wanted to say I was blocked back in Jan, but I avoided surgery, my gastro said I was lucky this time, but he hung around waiting to open me up and to see if the meds would work, and they did. I had IV hydrocortisone, metronidazole (flagyl) and morpheine. I was put on 40mg of Pred too when I came home, it healed me nicely.
You'll be ok, let the pred do it's work, and maybe this time, you'll avoid surgery.
good luck, speedy recovery
xxxx

 

[misterquin]

Hey guys just thought I'd update on how I'm doing. I've had very little pain at all except occasional acid reflux from prednisone. And my stools are perfectly formed! And I'm only going about once or twice a day with no pain or urgency.

The doc has me on 40 mg of pred and cipro, don't know which is helping though. The only problem is he has me scheduled to drop to 30 tomorrow then 10mg every week after. Anyone think this is too quick of a drop or based on my symptoms should it be fine?

 

[bethany84]

Hi Alex!

I'm sorry you been through all this! However I am glad to hear you are (hopefully) on the right path at the moment. I can't honestly remember the reduction rate of my last dose of preds! I think I have done it more gradually in the past but then i guess it depends on each individuals case? But if you are concerned perhaps speak to your doctor about maybe fortnightly reductions?

x

 

[effdee]

How long has it been since you started Prednisone? I recall tapering faster if I hadn't been on it as long (10mg/week, usually. 5mg/week once the dose got to 10 or 20mg). Can't hurt to talk to your doctor about it and hopefully get some reassurance (maybe ask what he thinks about lowering the dose every 10 days? or 5mg increments?).

I know how you feel about surgery. I'm 19 and that was looking to be unavoidable for me. The prospect scared me of problems down the road, since I've read that after you have surgery once there's a good chance you'll need it again.

 

[misterquin]

I'm probably going to call just to double check. I like the idea of a slower taper because before he upped it to 40mg, I'd been on it for about a month at 30. I just want everything to have time to heal and not rush it. Even though the side effects are miserable!

 

[Crohn's 35]

Yeah I would say 5mg is a slower taper...however it is best to find something more for long term that isnt as damaging as Pred. When do you see your Gi next? Hang tight ok.