Fistulating and Perianal Crohn's Disease

Hi, I'm 22 and was diagnosed with both fistulating Crohn's disease & perianal Crohn's about a year & a half ago. So far I've had 4 operations for abscesses- 2 were lanced & packed, 1 lanced with a draining tube and the latest was lanced with a seton put in plus temporary stitches & a draining tube. I've been on Humira and Purinethol for over a year & despite still having the seton in I am now looking at a fifth operation. I am incredibly unwell after each procedure, to the point of vomiting due to the pain & am sick of having all these painful procedures only to have the abscess form months later. Has anyone had the same issue or had a procedure they felt really worked for them? I'm sick of this interrupting my life.

[FRreedman]

I am so sorry for you , but please,please,please read my answer above. I wonder why the administrators don't have an automatic reply button offering the details of St Marc's At Northwick Park. It is brilliant. It is the world specialist centre for diseases of the colon and environs. Please, please use it. It really is Tops for Bottoms

[Hidden in reply to FRreedman]

Unfortunately I live in Australia but thankyou so much for replying! I really appreciate it. Had a fifth surgery yesterday to change the seton & there's no abscess so that's a relief

[willow24 Administrator]

Hi hun, I cannot imagine the pain your in. I had only 1 fistula yrs ago and fear getting another.

How often are you on your Humira? and at what dose? Humira can be taken weekly. Its obvious the medication or doses you are on are not working effectively.

there are newer biologics that may be worth trying. I used to be on infliximab but ended up with drug induced lupus. Humira is working ok tho (touch wood!)

I know my brother used to have fistulas, and when he had an ileostomy (20 yrs ago) the fistulas healed up and never had them again. his disease was severe and biologics were not available then though so surgery was his only option.

Hang in there x

[Hidden in reply to willow24]

Thankyou so much for replying Fistulas are an absolute pain, I ended up having 3 come back within the space of 6 months so hopefully you should be fistula clear!

I'm currently on 14mgs of Humira and have to take it every fortnight but sometimes I do wonder if it's working as I do still get the abdominal cramps, sometimes quite often.

I've definitely been doing a bit of research and read an ileostomy has worked wonders for most people. I actually had a fifth surgery yesterday to change the seton & by some miracle they didn't find anything new so maybe the Humira is working to some extent!

Sorry to hear about your health issues too hope they only continue to improve x

[willow24 Administrator in reply to Hidden]

Im on 40mg humira every 10 days, it can be increased weekly & to 80mgs, so you def have room to increase dose and frequency.

fingers crossed tho its working for you x

[Crohny76]

Hi,

I'm from Melbourne, Australia as well. I feel you with the fistulas, I have had them for over 4 years and my doctors and surgeon keep doing eua with Seton's but my gastro team will not put me on any treatment to help control the crohns. I have been trying to push for it, but to an avail. I believe strongly that if I was on treatment this would not be getting worse. I have had at least 8 surgeries and the last few have ended badly. Surgical errors!! One left me with incontinence which would burn with the fistula, so I had no choice but to suggest an ileostomy. Which has put me in a tug of war with myself, as to it being a surgical error that the hospital did not want to admit. Yesterday I had a seton changed, an abscess and the tract lanced with no packing, a skin gold that was caused by another error removed, (had ballooned after surgery, part of my Anus, after weeks the fluid leaked leaving a fold. It looked like when a large male dog has the empty sack after castration. It was bad!! ) the doctors didn't know why I was so upset?!,

Discharged with no pain relief to go home with and no information given on how to care for it, so it can heal properly.

I live on my own, I can't sit, hurts to walk and the pain is that bad it has caused vomiting. I can't sleep and have no appetite. Being 40kg I guess thats just a bit of a risk of loosing more weight that i can't afford to lose and defeats all the hard work I've done to try and stay above 40kg, regardless the hospital and gp turns there back on the problem, everytime I try to look for the cause and a solution.

I don't get why they are putting me through this?!

PLEASE: Does anyone have any advice, I would really appreciate it and I thank you in advance.

crohny76😢

[crohnscolitis93 in reply to Crohny76]

Hi crohny76,

I am so sorry to hear you're going through so much. It is so frustrating when doctor's seem to be so mystified by what feels like such a common disease. I have had a fistula for nearly two years and only a few weeks ago was it actually diagnosed as a fistula (with an MRI). I'm thankful that I recently moved to a new city (NYC) and had to find new doctors here--my care team has been incredible and made me realize how insufficient my last one had been before I'd moved. My previous GI was frankly lazy and seemed to give me a cookie cutter care plan. I developed an abscess about a month after being diagnosed with crohns, and neither my GI or the colorectal surgeon I met with would take me seriously when I expressed concern over the pain and feeling of fullness in the rectal area. They insisted that I just had a hemorrhoid. I ended up in so much pain that I didn't sleep for days and developed a fever/kept fainting and went to the ER--it turned out the abscess had gotten so large and bad that it was causing all these symptoms. They kept me in the hospital 3 days and drained it surgically. Following the surgery, the wound never healed. I went back to the colorectal surgeon, who basically told me that I had no cause for concern and questioned why I sought his care (even though the general surgeon who performed the drainage procedure and had been performing after care had told me I needed to find a colorectal surgeon specialist to continue care with). So I found a different colorectal surgeon, who thought I might have a fistula. He then had an imaging procedure done and decided that I didn't have a fistula. So simultaneously, I began seeing a wound specialist. Nothing changed for months. I moved to NYC, found this new doctor, and he has been very proactive in getting to the bottom of this. He had me get another colonoscopy as well as an MRI. The MRI helped him to diagnose the fistula and combined with the colonoscopy and lots of blood work he's working to get me approved for an increased dosage of Humira. I am crossing my fingers I get approved through my insurance soon. I've heard the surgeries are risky and often a shot in the dark, and that Humira can really turn things around. I urge you to seek another opinion. If I've learned anything, its that you simply can't expect a doctor to know best or to do his/her best. It's just unfortunately true, most of the time. Don't be afraid to switch doctors until you find one that is aggressive in getting answers and who actually listens to you. I know it's hard to know sometimes whether the care you're getting is actually the right care--its hard to question doctors without having the same degree that they have. But keep pushing them!

[Crohny76]

Yes!! I have been struggling with fistulising Crohns disease as well for 5 years. Operation after operation, it has become severe with all the scaring. I must admit the managment of it has been bad. None actually. They had me on budesonide for over 2 years and all that did was eat my muscles away. At the time I found out I had the fistulas I also found out I had a rare lung disease... Langerhans cell hystiotosis. I have had that many operations I've lost count. The last one they cut one of the fistula and tract out, but I still woke with a Seton. I have had some serious surgical errors made, where I ended up with incontinence and trust me, the pain was worse because it would also cause burning as well as discomfort and I became so self conscious. I was told that it wasn't incontinence when I noticed it straight after the operation. After 8 months of hell I opted for an ileostomy because it was bad enough having the fistulas. I had to fight for it as they didn't see the problem. Well, they don't live with it on a daily basis. I swore after the first time I had the bag I would avoid it till there was no other option. I didn't get that choice thanks to error. I then ended up with with who knows what after another surgery on my perineum, it was like a balloon, eventually it went down but there was like a struntched deflated balloon thingy left there. I had that fixed with my last op at Christmas. The deformity this fistulising disease has caused has taken its toll on me. I don't deal with the bag very well. Regardless I don't sit on the toilet for 4hrs in the morning, nor run to the toilet when I eat. Yet now they say to do a reversal as the incontinence may have corrected, yet if it hadn't the bag goes back on. That's a lot of strain for a small 40kg women to have to go through. So, yes I totally understand. Would love to know more..... How you manage it, products, anything.

[Eixor57]

I guess me suffering for 20 days as the abscess was fisulating is nothing compared to what you all have suffered. But it’s one of the worse things to happen to people with IBD. But I have to say none of my docs new what was wrong with me either. Even the ER doc couldn’t help me but he had me sit on his table doggy style to inspect my rectum and that was humiliating. I was taking Flagyl and cipro daily and Ibprofen 600 mg daily. The abscess finally burned from the inside out down next to my rectum where it had a tiny head. One doc drew some puss out of it. Very little. It gave me some relief. He thought it was gone. The next day pain was worse and finally went to Urgent care and that’s where I finally got my relief. They lanced it and pushed out all the puss. The size of a mans fist. Packed it up and told me to come back the next day. The next day the unpacked and repacked it and told me to see my GI. I told my GI I need a colorectal surgeon. Luckily they don’t have one of those in town so I got to go to one near Beverly Hills 2 hours away. Cedar Sinai Facility. L.A. has some great physicians. She was knowledgeable and seen this before. Did the clean out surgery placed a silk seton, and I went home. I took care of it by doing sithz baths daily. Using epsom salt, sometimes I even mixed in one drop of oregano oil. Prayed all the time too. Stayed on the SCDiet, and once I cheated with Sees Candy and another abscess was starting. Took my antibiotics right a way, prayed and got healed up. For the next few years if I cheated on my diet eventually I could feel an abscess forming but was able to kill it again and again with prayer and antibiotics. My seton fell out about 1 year later. So I was left with just the fistula. But no infection in there. It’s like a piercing. Today I am on Remicade trying to get the Crohn symptoms under control (cheated too many times due to feeling great for years) and staying on SCDiet, and praying a lot for healing. Once Gods heals me I planned on getting off Remicade and just continuing my diet and no more cheating!!