Fistula

[Grant]

Had a MRI Scan a month ago & finally got the results today, I've got a fistula or as the Consultant puts it a tract in the anal passage consistent with a Fistula. Very very dissapointed by this, feel a little crushed tbh. Hoping & praying this can be sorted by meds. The consultant refers to not being able to use Methotrexate for it as I felt bloody awful with it when I tried it 2 & a bit yrs ago. I'm scheduled to see the Consultant on May 10th but I'm trying to bring this forward, losing a lot of blood & its so sore. I'm using witch hazel for the outside soreness but inside its like razor blades.
Rgds
Grant

 

[AlliRuns]

Fistulas suck, but they are not the end of the world. The pain doesn't so much get better, but you get use to it. I have had one of mine for almost 8 years, the other for 6. I started Remicade in January and they are finally starting to get better.

 

[Grant]

Thanks AlliRuns, I doubt they'll put me on Remicade. I've a history of skin cancer, (x2 Carcinomas removed & facial solar keratosis). I have to Sizt Bath for relief about 3 times daily.
Grant

 

[AlliRuns]

Unfortunately not many other meds that helo with fistulas. Seton placement will prevent it from abscessing though.

 

[xX_LittleMissValentine_Xx]

Sorry to hear this. I hope you can come up with a treatment plan which works for you and enables you to live with the fistula x

 

[MikeinBklyn]

Indeed, fistulas do suck.

Try getting into the tub with warm water and Epson salts, this provided great relief.

If you can do the Sitz bath as often as you like. I brought one in to work and did it every 2 hours.

Keep the area as clean as possible, this will help with irritation and pain.

There is a salve that also helped somewhat, I will take a look at home and get you the name.

I did have 2 fistulotomies. I was on large doses on Cipro and Flagyl, not very pleasant but it did help somewhat. Seton placement keeps the tract open and free from infection, but it is a PITA, literally. You get used to the seton after a while, well kind of.

Going on Humira did the trick for me and closed that SOB up in a few days.

Good Luck!!!!

 

[Grant]

Thanks Mike & LittlemissValentine. Sadly Mike this has happened whilst on Humira. Yep agree ref Sitz Baths, they give relief albeit temporary.
Rgds
Grant

 

[Bryonyboo]

I had a fistula form whilst on Humira, and had just had seton drains put in,and am due to have the fistulas laid open in a few weeks too. The seton drains don't hurt at all now that the infection has been draining out for 3 weeks, I'm amazed at how much they don't bother me!!
So if they suggest setons then go for it, they are great!!
Calmoseptine is amazing for the external pain and irritation .

 

[Grant]

Bryonyboo, tks for that. I will go for setons if thats what they suggest. I'm bleeding now with every BM, plus I've got a pain that doesn;t feel like a normal stricture by my right hip, about 2" in.
I'm passing a lot of either mucus or pus, I cant tell which. Seeing the Specialist on friday.
Rgds
Grant

 

[Grant]

Quick update, Saw the specialist last friday. Being referred for an Ultrasound for pain by right hip.
And referred to surgeons for Fistula (possible Seton). They want to go the whole hog & fit me up with a permanent Colostomy, I'm not keen. Very down that they keep suggesting it, they don't mean it in a bad way. TBh my Specialists are brilliant but to put it bluntly I'm terrified of the thought of it.
Because I've been so down I've had a reaction, basically & I've had this before, I get mouth ulcers but it causes inflammation inside my face & the pain up the left side of my face & over my eye is terrible. I'm on pain killers for that & a funny steroid tablet that you put on the ulcer/inflammation inside your mouth & it dissolves.
Bloody Crohns!!:ymad:
Grant

 

[Bryonyboo]

Oh dear, well firstly the setons are fine , you will get used to them and if they help get rid of the pain and infection then perhaps you avoid the colostomy. I am lucky that it has never been suggested, and I would be like you, terrified of the thought. Try and ask some questions on one of the forums on here for colostomies, most people seem to have a really positive result, but it's such a scary thought.
Good luck with ultrasound and I hope your mouth gets better soon, sounds so nasty, big hugs and keep strong .

 

[Sailorluna]

Hi Grant,
My surgeon has mentioned the possibility of a bag several times since I developed the perianal fistula. He no longer thinks it is likely to be needed. My fistula track kept abscessing and building new tracks (with a seton in) until they went back in and scraped it very clean/joined the tracks together and put in a fresh seton.

Just wanted to let you know that thing can change... scary and frustrating as the whole thing is. If they really push you for the bag you may want to get a second opinion. The bag is a big step so I can see where you would want to exhaust all option - esp if they are saying a permanent bag

 

[Grant]

Thankyou so very much Bryonyboo & Sailorluna. I'm hoping a Seton will sort that particular problem out. I feel like I'm under attack from 3 sides atm, with my face, my side & my backside.
Memo to myself, buck up & stop feeling sorry for myself. :ylol:
Best Wishes & keep Well
Grant

 

[Jaano711]

Hi Grant,
Go for the setons and see what happens. Did they find what was causing the right hip pain?

I have a permanent ostomy done last August due to severe perianal fistulising disease. It's been a tough op to get over both mentally and physically but I now don't have a sore, swollen oozie undercarriage.

Keep us posted. The Stoma sub forum is a good place to go for support if the colostomy is a big question. Everyone over there is great and really supportive.

Thinking of you and hoping it all turns out for the best.

 

[Grant]

Jaano711, thanks very much. The pain near my right hip is due to have an ultrasound. IMO they're looking for another stricture & TBH I think they're probably right.
Rgds
Grant

 

[mish2575]

There is a salve that also helped somewhat, I will take a look at home and get you the name.


Good Luck!!!!

What is the name of the salve?

 

[Grumbletum]

Calmoseptine has good reports.

 

[mish2575]

Good deal, thanks.

 

[Grumbletum]

I'm not sure if they sell it in pharmacies in the UK, but I've seen it for sale on Amazon.

 

[mish2575]

Good point, I'm in the US

 

[Grant]

Had my Ultrasound yesterday, inconclusive. I'm getting the pain still by my right hip but its lessened since I switched to a low fibre diet. That sounds like a stricture & the Dr who does the Ultrasound has always found my strictures before-this time nothing. I don't know what to think.
Grant

 

[Grant]

Looks like they're going to do the seton for the fistula & possibly botox injections because of the internal fissure I've got.
Grant

 

[Grumbletum]

When will that be done, Grant? I hope it works out for you.

 

[pipmom]

I found the Calmoseptine in the baby section where diapers are located at the drug store. In the U.S at Walgreens.

 

[Sailorluna]

The Walgreens by me has the calmoseptine behind the pharmacy counter. You have to ask for it.

 

[Grant]

When will that be done, Grant? I hope it works out for you.

I have absolutely no idea Grumbletum. The Surgeon I spoke to was extremely grumpy & tbh a right misery, I asked & she just shrugged & said I've no idea I dont book patients in. Charming eh.
Grant

 

[Grant]

Having the Seton put in Friday 13th September :lol:.
I think the fistula is now completely bypassing my colon except perhaps for the final few centimeters of my rectum. I've been getting torrential diarrhea & it got so bad that I bought some activated charcoal capsules. Now these dont stop the diarrhea but they give me a semblance of control that Questran Light wasn't. This happened very quickly about 10 days ago accompanied by mild cramping pain on my left mid to lower abdominal section.
Hate to say it but gradually slowly I think I'm moving closer to a Colostomy, the thought terrifies me but I'm not sure I've too many other options if I'm right about this.
Rgds
Grant

 

[Grant]

Got back from the hospital, surgeon couldn't do an awful lot sadly. Before I went to Theatre she asked how my health was, I told her that I'm flaring again(something I've been in denial about). Basically told me that any thoughts of Botox in the fissure's was out because it weakens the muscle's down there & I'll be incontinent.
She didn't do the Seton because there is no infection, she scraped the Fistula as best she could & Fissure's to try & promote healing.
I wouldn't say wasted journey, she did what she thought best & I agree with her.
Back to Gastro Clinic for me.
Rgds
Grant

 

[Grumbletum]

Aw Grant, that must be very disheartening for you. Have you ever been on Enteral Nutrition before? I know some people have had success with fissures and fistulae healing after a period on it. I am guessing anything is worth a try at this stage :-(

 

[Grant]

Tks Grumbletum, not sure its for me TBH. I'm getting terrible diarrhea & I'm not sure EN diet will stop that. Basically I need to go back to the gastro team & find a way of getting my Crohns under control. My self esteem is very low as for the 1st time ever I'm using pads. Just seems that every step of the way & bit of my dignity is removed.:frown:
Rgds
Grant