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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Should I persist with drugs or consider major surgery?



12-11-2013, 07:47 PM   #1
QueenFox
 
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Should I persist with drugs or consider major surgery?

Warning - long rambling ahead...

While I am a newbie here I have been battling this illness for 10 years now, I was diagnosed as one of these indeterminate colitis folk in 2004 at aged 15. However recently a few doctors who have reviewed my entire history are starting to lean toward crohns or crohns colitis diagnosis – this is due to the fistulas, my bro recently being diagnosed with crohns, my sister has had tests saying she is at risk of crohns and grandfather with cancer in the large bowel.

Anyway - I am currently going insane over 3 fistulas – 1 rectovaginal, 2 perianal. While none are draining blood or pus I have a large amount of stool passing through it and occasional gas. The leakage of stool is constant and sometimes feels like diarrhea but through the wrong hole. The skin all around my backside and vagina is constantly red and sore (barely managed through using calmoseptine, wipes, and constant clean pads). I also do have a great sense of urgency/pressure to go to the toilet, when I do have a BM the pressure can be quite uncomfortable with straining – this may be more to do with my jpouch more than anything but I have notice the urgency/pressure is a whole lot worse since the fistulas arrived, often needing lengthy bathroom visits 7+ times a day and this is on top of the fistula constantly leaking stool. The consistency hasn’t changed however, always ‘porridge’ like – sorry probably TMI.

After consults with my surgeon and GI the past two weeks I am struggling with how long I should persist with the current treatments before considering major surgical options. I had 3 setons placed in April and they were removed Mid October. I started Humira Mid September however have seen no change or improvement in the fistulas or BM’s (I was unfortunate to get gastroenteritis end of October) and a recent check up showed the opening of one of fistulas internally is widening. My GI has insisted I stay on the humira till February if I have seen no improvement he recommends I try remicade for 6 months, then maybe other biologics and if all else fails maybe surgery. My surgeon on the other hand advise if I see no improvement with the humira come new year I should look at the surgical options – his suggestions pouch advancement (though he gave it a less than 40% chance of success) or ileostomy.

I have had courses of remicade back in 2004/2005 which worked quite well for the managing bowel inflammation and improved my general well being a lot. The reason in which remicade was discontinued was it was seen with a combination my jpouch surgery I was in remission. I am worried that going back on remicade my body may resist it and well going in for infusions every 8 weeks will be annoying for my work schedule, especially after so much time off already this year. Also staying on these treatments in the long term I am not comfortable with due to sick effects, basing my life around infusions, when the next new approved biologic may come out and if it works. I am tired and ready to move on with my life – focus on my career, get married, travel – all of these things I have put off due to my illness keeping me away from them or be terrified that it would interfere with them. (who wants to go travelling only to constantly look for bathrooms and spend lengthy time in them?)

Surgery is a major step and I would probably head down the ileostomy route rather than pouch advancement if I choose surgery. Although I did have many issues with my temp ileostomy back in 2004/05, some were my own fault (being a 15 year old I was overwhelmed and not educated well on how to look after the stoma) and others were the result of circumstance – one of lapro wounds burst opened oozing bucket loads of pus just below my stoma and the wound had to heal from the inside out leaving me with a ‘second belly button’ or dimple in the skin. The location of this meant leakages were fairly common and the skin around the stoma became red, raw and excruciating painful. My surgeon ended up stitching the top part of the stoma to my belly to keep the outpout flowing into the now oddly positioned bag and not onto my skin or onto the skin dimple. With issues like these in the past I do not want them to return again permanently if I choose an ileostomy. With the current attitudes from my team of doctors leaning towards crohns I know my jpouch is at higher risk of failure and I may not have a choice for surgery in the future. I am just not sure if such major surgery is the right path right now – The permanency of an ileostomy is daunting and if I have complications like I have in the past I know I would really struggle with my decision.

So after that long rant I am debating whether how long I should continue trialing the biologics or should I opt for surgery. Will either treatment be the answers of dealing with my fistulas and current issues with BM’s – nobody knows, but I would greatly appreciate your input.

P.S. Current Medications: 40mg Humira fortnightly, 100mg Imuran, loperamide daily as needed, calcium + vit D daily, iron + zinc daily, probiotics daily.
12-11-2013, 11:36 PM   #2
Essieluv
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You could try upping your Humira dosage. I know some people take it every ten days or every week, and that helps them incredibly. Fistulas are nasty and uncomfortable at best, I'm sorry you have to deal with them. I'm sorry I can't give you much advice, but I hope you achieve remission quickly. Sending you hugs and prayers.
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12-12-2013, 01:37 AM   #3
QueenFox
 
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Thanks Essieluv!

That is certainly a possibility, I will discuss it with my GI. It may take a while Humira in Australia is regulated and subsidies by the government through Medicare, any change requires their approval (it has taken 3 months for me to swap from the pen to syringe).

Sending those hugs and prayers back at you!
12-13-2013, 11:15 AM   #4
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Thank you for sharing. I was at mayo clinic a year ago scheduled for j pouch surgery. The day before the surgery the surgeon sat me down and said he couldn't do the surgery due to 'sniffing' crohns. He explained to me what you are currently experiencing. I too have a rectovaginal fistula. He said I would hate him if we did the surgery and starting pooping out of my vagina, pouch would fail then I would have a permanent stoma. He felt it was it was in my best interest to give cimzia a try. I have exhausted all other meds. A year later the GI docs have decided that cimzia isn't working as it should. I still have blood, pus and mucus. It has been 10 years for me also in living with whatever disease I have. It does suck. You sound strong and I like your dream. Don't give them up! In January I will have been married 2 years to the most wonderful man. I have the job of my dreams and so thankful for my blessings.

I'm on my way to get a colonoscopy and endoscopy now. MRI next week. They want to add methotrexate to the cimzia. I too wonder what would be better. Such mixed emotions with all the failures. I appreciate your honesty in sharing. Jill
12-14-2013, 02:13 AM   #5
QueenFox
 
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Hi Jill,

Thanks also for sharing with me - you sound like a tough cookie as well. I hope your tests provide some insight and help to put you on the right road to recovery. Knowing someone out there has had similar experiences to me makes me feel more at ease and not like i'm going insane - so thank you

Side note - My GI has mentioned briefly to me about methotrexate - however warned that he hadn't seen personally if they help with rectovaginal fistulas, but knew some people swear by it.

Rest up and take care!
12-16-2013, 05:57 PM   #6
smallfry
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hugs, abscesses and fistulae are pesky and absolutely draining in more ways than one!!
I currently have a temporary loop ileostomy to rest my butt. It really sounds like your butt could use the rest too. I think that ostomy products are a bit better since 2004/05 where they have made some advances in skin care. I recommend, before making a decision that is; contacting suppliers for samples to see how they are on your skin. I currently use Coloplast Sensura line but I'm thinking you may benefit from a line I tried for a couple weeks and thought was pretty good just not for me. The are called Salts Healthcare, I tried the Harmony Duo flex fit flange with aloe. This flange is created in a way that the edges contour to fit your body better, also they have a product called a stoma collar (my stoma is too short to use it) that may help with leaks. There are so many seals and strip pastes from different companies as well. Never hurts to ask for some samples

here is a link to the Salts product I tried: http://www.salts.co.uk/Our-Products/...lexifit-1.aspx

All the best!
Jen
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Crohn's disease since 2001
abscessing/fistula since 2006
seton placement for 8 months
4 cases of crohn's related iritis


Diverting Loop Ileostomy Sept.19 2012
Proctocolectomy April 16th, 2014 and off all major meds

Meds
Past - asacol, prednisone, imuran, Remicade from 2001-2008, flagyl, cipro, Humira 2011-2013, 10 months of IV meropenem
Current - T3's, prozac, clonazepam, probiotics, caltrate plus, multivitamin, vitamin D
12-17-2013, 01:59 AM   #7
QueenFox
 
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It really sounds like your butt could use the rest too.
Absolutely! I wish my bum could go on a nice holiday (hopefully somewhere tropical) Thanks for the link for the products, if I do go down the ostomy route I will definitely ask for samples and ensure I pester the stoma nurse as much as possible about the latest products. Just at a quick glance there has definitely been improvement with ostomy gear since 2004/05.

I do have a couple questions...how long did in take you after the surgery to get back to work/school/normal activity? Are you seeing results/improvements in your general well being and 'getting your life back' with the temp ileostomy?

Stay healthy and happy
12-17-2013, 02:14 AM   #8
Nyx
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I just kind of stumbled upon this post and wanted to throw in my 2 cents I have a permanent colostomy, and I've never felt better. I'd just like to preface this with the fact that when I was first diagnosed with Crohn's, I didn't want a bag. I was going to do anything in my power to not have to have one. I had no idea what they were. I had no idea about any of it. I had seen a brief article once about it, skimmed over it (because I was terrified) and thought to myself "I DO NOT want that...EVER". But, my body had other ideas...lol I wound up having emergency surgery and wound up with the dreaded bag. Don't get me wrong, surgery was hard, and getting used to the bag was hard, but I don't regret it for a minute. It took me about 3 months to get back to "normal", but I had a lot of complications with my surgery and I was really sick when I was admitted to hospital.

If you want to know more about stomas and read some really funny, and successful stories, visit the stoma sub-forum. Ask questions, poke around...we're a fun little club over there

Good luck to you in whatever you decide to do!
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Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

12-17-2013, 09:27 AM   #9
lgpcarter
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Sorry if I missed it, QueenFox, but have you been on Remicade? It has a much higher success rate for fistulas than Humira does. If you haven't tried it, it might be worth taking to your GI about switching.
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Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 8 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
12-17-2013, 05:08 PM   #10
QueenFox
 
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have you been on Remicade?
I have was on Remicade a few years ago back in 2004/05 - this was to keep inflammation under control and put me into a 'remission' phase of sorts. It was discontinued because everything was going extremely well with my jpouch, general wellbeing and doctors wanted me to focus on school again.

I have not had remicade for the treatment of my fistulas and will be discussing with my GI in the new year (all my doctors are away till February grrrr). My surgeon however did not think that humira or remicade would be suitable for me and favoured surgery (of course a surgeon would though lol).

As I have been on remicade in the past I am worried that I may be resistant to it and have a reaction. Also taking more time off work isn't great - particularly when I will most certainly be travelling next year for a month or so at a time to China for business - but if it means getting healthy and back on track I am happy to skip this.
12-23-2013, 03:21 AM   #11
smallfry
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[QUOTE=QueenFox
I do have a couple questions...how long did in take you after the surgery to get back to work/school/normal activity? Are you seeing results/improvements in your general well being and 'getting your life back' with the temp ileostomy?


We are all different in our healing times. Going to the stoma subforum is a great idea, you cold ask this question there as well maybe...

In my case, I am still having abscessing trouble. With the temp. I did get a [wiki2="Seton"]seton[/wiki2] out and a fistula closed while on Humira and an IV only antibiotic meropenem but can't seem to stay off the antibiotic, was on it for about 10months.. I've been off it for almost 3 months now which is my longest run but unfortunately I've been abscessed again, it's been a slow fester at least, but on oral antibiotic for now till the new year but I think I'm heading down the road of a permanent; hopefully that will help!

Having said that I do love my ostomy for saving my butt from that extra extra irritation from poop!!

I agree, tropical would be just excellent!!!

Cheers!
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