CLO!!

Hi Clo,

I know your CSR appointment is tomorrow. Thank you for asking about the LIFT/Flap for fistula repair.

My CRS (and it seems Canadian CRS) do not do any other fistula surgery besides setons (had them) and diversions. I've read stories on this forum about how well it works and presented him with supporting clinical data to know avail.

He dismissed the LIFT entirely
He dismissed the effect of my RVF on my vaginal pain
He dismissed that chiropractic works for my peri anal pain

He believes I have no choice but to live like this. But I do. I'm currently looking at going to the States for help.

Basically I'm wondering the general location of your surgeon and if they would consider performing a LIFT on someone with crohn's. I'm not in remission but am fairly well and stable.

Thank you Clo; I'm desperate for help. If the surgery can give me a break I'd love it. I'm not expecting long term results given the prognisis of this disease but I would like the opportunity to live pain free and in remission

Kindest Regards

My partial/full fistulotomy and seton surgery is on the 15th and my surgeon is a young hotshot csr. He does fistula surgeries almost everyweek according to my bro who works in the same hospital as a surgical tech. He even worked on the wife of the hospital's president.
Here's his page:
http://www.centraltexascrs.com/dr-thiru-lakshman.html

Thank you gyp! I will contact him. (I like young hot doctors! oh wait you said hotshot...darn

Clo---you didn't let me down at all. You've gone above and beyond. This is new info about the skin issues. My PG is in remission with IVIG so I'm sure that's not the case. I just don't understand how contradicting these studies are. The LIFT has a high success rate for CD patients.....if you feel like your doctor is approachable I'd love to contact him. I can't let this go....


You are not whining....and you have a right to complain and be disappointed. It's been a rough go and new growths are concerning, especially because the wait time isn't instantaneous like on TV I think it's good advice to concentrate on continuing to get better, but if you need a cry or whine or bottle of wine do so

How are you feeling about a permanent stoma?
I get what you mean about the diet "cheating." I've beaten myself up for living too. But the reality is 1 hot dog didn't cause the new growths. It's simply a vicious disease. Since I've reintroduced gluten my bowels are formed. Who knows??? Stop beating yourself up for enjoying something pleasurable; but might I suggest freshly caught lobster with butter and a gin and tonic after the next infusion? lol.

UBT--why not get a consult with Cleveland Clinic? If anyone will perform "taboo" procedures on Crohn's patients, it's CC. I planned to consult them about doing a j-pouch, because they are about the only place that will even consider a j-pouch for a Crohn's patient. So I would definitely consult CC if I was you, because they have the talent, the experience, and the *balls* to try things other doctors wouldn't.

Clo--I'm praying that your biopsy results are no cause for alarm. Glad you made it through the colonoscopy--how was the prep? Were you glad you had the hotel room?

Clo--
So glad the prep went better than expected! I would definitely look into the hotel voucher--you really shouldn't be burdened with the expense. When will you receive your biopsy results?? I think it'd be good to speak to Cleveland Clinic about your fistula, though it does sound like the least of your problems at the moment.

As for me, I would still consult with Cleveland Clinic and consider traveling to them for surgery. But upon further investigation, I think I will opt for a permanent lileostomy and not bother with the j-pouch. Reasons being that 1. One fistula is *enough* for me, and a j-pouch exponentially increases the chances of having more fistulas. And pouchitis. Etc. 2. In the event that I have a j-pouch with complications, that means more drugs and more surgeries--basically, more problems. 3. The permanent ileostomy would be one surgery vs. 3 surgeries for the j-pouch... I could go on and on but yeah, an ileostomy would be a safer bet and I don't feel like "gambling" on a j-pouch at this pointvin my life, ya know?

Plucky,

I have to admit, the colostomy has improved my quality of life. I sometimes forget it is there. I completely understand your reasoning on the 1 surgery vs. 3, and on the fistula situation. Since my colostomy I have not gotten any new fistulas. I still have the RVF and one other that I just have not been able to heal. The RVF will never heal but the other one is getting smaller and opening less frequently. Biopsies take 1 week. Meds are up in the air. They were talking about doing 3 or 4 infusions on a weekly basis, and then going every 4 weeks and after another scope maybe we could stretch it out. We did this at the beginning and it worked....so we shall see.

So where and when would you have surgery? Or is the stelera working? I read that it takes time for it to work....are your symptoms better?

Clo

UBT & Clo--
The Stelara seems to be working. I saw the IBD Specialist... Last week? Thursday before last, so like 10 days ago. I had started having some blood again and I began to worry that the Stelara was wearing off after only 4 weeks. Last week I had a return of symptoms--some blood, urgency. But now these last few days have been better--more formed, less urgency. I wish I understood how any of this works--what causes the symptoms and what makes them go away! I am clueless. But just grateful to be stable at the moment. I toilet usually 2-3x per day, at least partially formed, usually no blood.
I have anal leakage and that is frustrating--it smells (like REALLY bad sometimes) & gives me "diaper rash". I asked IBD Specialist if she'd wager a guess at what's causing it--my perianal fistula, my thrombosed hemorrhoid, or is it residual damage from my recent flare? Or all of the above? IBD Specialist took a look and said she could hardly even see my fistula opening (above my anus) so apparently that is healing. She coukdn't say why I have the anal leakage but told me her CRS "won't touch me" until my disease is well-controlled. My thought (which I did not say out loud) was "What if this is as good as it gets?" Will they keep pushing me off? Uhg. Biggest deal for me is that I'm dropping my prednisone 2.5 mg per week--I'm down to 25 mg and going to drop to 22.5 mg on Monday! I'm nervous to get down to 20 mg and below, but agreed to drop 2.5 mg per week no matter what and be done in 10 more weeks. Prednisone and being sick caused me to lose almost 30 lbs. Ironically I am putting on weight as I drop the prednisone and heal, and I've gained all of it back. Which I would rather have kept off 15 lbs, but whatever--at least I'm feeling better. Trying to get back to the gym, just doing some moderate (walking at an incline on the treadmill) cardio a couple days per week, trying to build up my stamina. And trying to keep up with the toddler!

So I don't think I'm headed toward surgery soon. I think I'm heading toward some sort of half-baked remission. But I don't expect I'll ever be the same as I was before this flare.

Oh and UB, I might be getting a yeast infection. Stelara has made my teeth more sensitive but that's about all I can think of as far as side effects. I take my first injection (beyond the initial infusion) in a couple weeks.

EDIT: Also my freaking hair has been falling out for several weeks but I don't feel that has anything to do with Stelara. Could be the months of prednisone, the few weeks of 6MP, or the aftermath of being sick for so long. Luckily people can't tell but I certainly notice, plus I'm covered in hair all the time.