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.
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.
