It's baaaack! (maybe?)

[jellicus]

Hi all.

I was diagnosed with Crohn's in 1986 at age 24, and had a resection of the ascending colon the next year. A large bowel series a year or so after surgery showed some recurrence, and I was prescribed one of the 5-asa drugs, which made me very sick and I decided to just see how I did untreated.

The anastomosis of the surgery had got very narrowed from scarring and has troubled me since, along with some irritable bowel symptoms, but I've had few clear Crohn's symptoms, at least none I couldn't successfully ignore and consider myself lucky.

Last week I was suddenly hit with what I thought was the flu: achy, on and off fever up to 101, and rampaging diarrhea. I saw a GP a couple of days ago, and they think it's a Crohn's recurrence, though no imaging or scoping has been done. That anastomosis is so narrow the last time a GI tried it they couldn't get the scope through to get a biopsy.

I'm trying to control the diarrhea with Imodium, with a bit of success, and now I need to find a good GI in Manhattan with Crohn's experience. The last heavy hitter I saw was Daniel Present, but I'll bet it would take a long time to get an appointment. Suggestions would be welcome, I'll post a request for referrals on the main forum.

 

[CDDad]

I think Dr Present might get you in since your symptoms are severe, and you have a history with him.
I saw him before my Protocolectomy. Getting his opinion reasurred me that I was doing the right thing. And I don't recall waiting long for an appt.

Anyway, years ago I did the same as you for many years. Out of frustration, I went untreated and just dealt with my symptoms as best I could. Turns out that was not the best game plan, because the inflamation just grew unchecked and bad things happened down the road.

I hope you start feeling better!

 

[Dexky]

Hi Jell and welcome!! I have nothing to offer but good luck!! I hope you stick around and find the help you're looking for!!

 

[jellicus]

Thanks CDDad, maybe you're right, I should at least call and see if Present can see me. He's got to be pretty old now, no? He was a leader of the field back then. The Doc I had before was another big dude, but of the previous generation. In the main forum I posted that he was no longer with us, but apparently I misremembered, googling shows Dr. Herman Steinberg is in his 65th year of practice! Wow. Go dude. But even a couple of decades ago the reason I went to Present was that Steinberg believed in minimal treatment if possible. I guess I've actually been following his advice, but I don't think I'll look him up.

 

[DustyKat]

Hi jellicus and :welcome:

Good to see you here. I can't offer any advice about docs in Manhattan but I agree with CDDad, if it were me I would ring and put the hard word on about your symptoms and how you are an old patient of his, it can't hurt and who knows. keep us posted on how you get on.

Take care,
Dusty

 

[Pirate]

Hi Jellicus, welcome and good luck. Hey we have the same diagnoses year. I was diagnosed in Febuary of 86. That would make us the same Crohns age.

 

[Astra]

Hi Jell
and welcome

I agree with CDDad, leave this untreated and with 'minimal treatment' is asking for trouble. Leaving inflammation untreated results in scarring and strictures, which will eventually narrow and block the bowel.
I didn't get a dx for 15 years, my insides looked like the Gaza Strip!!
There must be a whole new team of gastros there now, surely?
wishing you luck in finding answers
lotsa luv
Joan xxx

 

[jellicus]

Thanks for the support all!

The good news is I went over 30 hrs without a run to the can. I was getting worried about overdoing the Imodium and getting a blockage, but managed to "get one out".

The temptation to stick my head back in the sand and pretend this never happened is REAL strong. I even have a possible culprit- within the last 2 weeks I started using Nizoral shampoo, which has these possible side effects listed:

nausea, stomach pain, low fever, loss of appetite, weakness, dark urine, clay-colored stools, jaundice

Now, these are probably for taking it systemically rather than topically in shampoo, but perhaps a someone like me has extra sensitivity?

Whatever. I'm feeling much better but I still should see a GI and take care of myself. Reading some posts here reminds me of how lucky I've been so far. My sister has been even luckier. She was diagnosed at 14, had a resection, and has been clean for nearly 40 years. YMMV, huh?

 

[acg101]

Hi jellicus and welcome to our forum - I agree with cddad above that letting the symptoms be without care is rolling the dice.
As far as doctor in NYC, I have seen Dr Present for 15 years and he is defiantly one of the best in the world... BUT he is not young and he travels a lot so its difficult to see him. His younger partner is Dr. Jim marion and he is very good.
Good luck

 

[jellicus]

Update:
Last year my symptoms went away. I did see a Dr, who took some blood, and called to tell me I had elevated liver enzymes. So it looked like the shampoo was the culprit. And so my head went back in the sand, despite his wanting to do a colonoscopy.

But this August I again went down with constipation, pain & mild fever, apparently as a result of dehydration, and he sent me for a CAT that diagnosed me with Diverticulitis. A course of antibiotics cleared my symptoms, and he just did a colonoscopy, without finding Crohns. But the fasting and prep really destroyed me, messing me up for days. Now he want to do an upper GI series, and I wonder if it's really necessary to get more radiation exposure. Is it really that much better than a CAT?

 

[acg101]

upper GI although not very comfortable, gives the Doctor a close view of the area, much more details than CT

 

[Jessi]

Welcome back, Jellicus. Sorry you're not doing well. I know it's hard to do all these tests that our doctors request, but he has your health in his best interest, I'm sure. Please keep us posted and let us know how it turns out. :hug:

 

[xJillx]

Personally, my upper GI series didn't really do anything for me. The tech said images weren't clear enough. I don't think I'd bother with one again.