- Joined
- Sep 26, 2012
- Messages
- 1
Well let's start at the beginning............back in Aug 2009 I first noticed the dreaded blood in my BM and arranged an appointment with my GP, who were fantastic. After an intial appointment I was referred to my local hospital.
Within the first 6 months of first visiting my GP, I was seen by several consultants and had varying thoughts and opinions on my condition. Ranging from small to very large fissures i was then admitted as a day patient for my first colonoscopy.
When the results came back they confirmed i did infact have a small fissure and very bad inflammation in my tail end - proctitis. During this time I continued to see my consultants and specialist nurses and my medication fluctuated depending on my symptoms and condition.
- pentasa granules - varying doses
- asacol suppositories
- fluid enemas - cant remember which ones
- foam enemas
- mesavant xl 1.2g tablets
All seemed to be going as well as it can be and I felt happy enough with how I had been seen and listened to and to my delight I was discharged for 1 year in May 2011............then low and behold at the end of June 2011 I noticed a tender feeling lump beside my anus. I went straight back to the GP who suggested going to A&E and was admitted that afternoon with the diagnosis of an anal abscess. In theatre within a few hours they could not locate any abscess and I was discharged the next day. The following few days were the worst days ever. The pain was ridiculous and after seeing another GP several times and prescibed more antibiotic and pain relief I was told to go straight back to A&E where I had been only 4 days earlier. I could barely walk, couldn't sit, laugh or cry without it being painful. I was barely seen by the first consultant before being re-admitted. I remember the examination so clearly with all 7 of the medical team I was under - one look no touch and it was confirmed - I did infact have an anal abscess. Back to theatre I went were my ascess was drained and luckily it didnot require any packing in the treatment.
The relief both pain and emotional after being discharged was almost instant.
At my follow up appointment I was told everything had went well and the incision was healing well. Although after several weeks my symptoms were still pretty much in full swing and the incision began weeping.
So back to the specialist I went and another sigmoid scope, MRI and i think another colonoscopy later It was confirmed that I had a fistula and still indeterminate IBD alothough they were sure it was crohns there still was not enough evidence to conirm and start treatment for crohns!!??
At the start of this year I continued to attend my speciaalist nurses' clinic monitoring my symptoms and condition and come march my fistula continued to leak fluid and then blood to which I was brought back in for another colonoscopy where they planned to insert a seton drain to allow it to continue to drain. Back on the ward I was told by my surgeon that they did not need to insert a seton after all as the opened up the firstula as it was so shallow ..........
........the first time I had been told that the "fistula" I had was not infact the tract that the abscess had formed -- is this even classed as a fistula then and if so did I infact have 2 fistulae then???
Well since being discharged late April this year I had been symptom free and attended my follow up appointment to be told I do infact have CROHN's that had now been confirmed by the pathologist report! I was then started on Azathioprine 25mg to be increased fortnightly by 25mg until I reached a total of 100mg with fortnightly blood tests. Which were then increased to monthly as my levels were "great".
Thankfully I did not experience any side effects and my symptoms stayed away. I returned after 4months on Azathioprine to see my consultant and was told everything was going great and didnt need to be seen for another 6 months but to link in with my specialist nurse should I have any issues.
At this point I thought as I was healthy and had been for 5months I thought I would ask about any complications starting a family would cause, with both my condition and medication.............part of me wished I hadn't asked as the understudy to my consultant said that I should remain on my aza for at least 12 months before being weaned of it and then remain off it for 6 months before even thinking about trying for a baby
shocked, devastated and breaking my heart she then thought to seek further advise from the lead consultant in clinic that day.............only to be told that there would be NO issues for me to not try for a family so long as I was no having a flare up!! :thumleft: Drying my tears I felt good walking out of the hospital and telling my partner the good news............short lived my happiness was....my symptoms started to reappear that very night!! After a phonecall to my SN he advised to double up on my Mezavant XL for 48 hours and then to contact him again to advise my condition - with the look to possible short term steriods.......48hrs up tomorrow and things are looking not too bad thankfully.
Procedures:
4 x Colonoscopies
1 x MRI
1 possibly 2 Fistulae
1x anal abscess
Diagnosis: 2009-2011 proctitis
2012 Crohn's
Symptoms:
Bloating, trapped gas/wind, loose and blood stained BM's, extreme tiredness, spot breakouts, frequent feeling of needing to move bowels but only passing mucus and or tiny movements.
Medication:
Mezavant XL 2.4g daily or 4.8g in flare up
Azathioprine 100g daily
Ferrous Fumerate 210mg daily
So that is my story as well as I can remember it anyways
Cx
Within the first 6 months of first visiting my GP, I was seen by several consultants and had varying thoughts and opinions on my condition. Ranging from small to very large fissures i was then admitted as a day patient for my first colonoscopy.
When the results came back they confirmed i did infact have a small fissure and very bad inflammation in my tail end - proctitis. During this time I continued to see my consultants and specialist nurses and my medication fluctuated depending on my symptoms and condition.
- pentasa granules - varying doses
- asacol suppositories
- fluid enemas - cant remember which ones
- foam enemas
- mesavant xl 1.2g tablets
All seemed to be going as well as it can be and I felt happy enough with how I had been seen and listened to and to my delight I was discharged for 1 year in May 2011............then low and behold at the end of June 2011 I noticed a tender feeling lump beside my anus. I went straight back to the GP who suggested going to A&E and was admitted that afternoon with the diagnosis of an anal abscess. In theatre within a few hours they could not locate any abscess and I was discharged the next day. The following few days were the worst days ever. The pain was ridiculous and after seeing another GP several times and prescibed more antibiotic and pain relief I was told to go straight back to A&E where I had been only 4 days earlier. I could barely walk, couldn't sit, laugh or cry without it being painful. I was barely seen by the first consultant before being re-admitted. I remember the examination so clearly with all 7 of the medical team I was under - one look no touch and it was confirmed - I did infact have an anal abscess. Back to theatre I went were my ascess was drained and luckily it didnot require any packing in the treatment.
The relief both pain and emotional after being discharged was almost instant.
At my follow up appointment I was told everything had went well and the incision was healing well. Although after several weeks my symptoms were still pretty much in full swing and the incision began weeping.
So back to the specialist I went and another sigmoid scope, MRI and i think another colonoscopy later It was confirmed that I had a fistula and still indeterminate IBD alothough they were sure it was crohns there still was not enough evidence to conirm and start treatment for crohns!!??
At the start of this year I continued to attend my speciaalist nurses' clinic monitoring my symptoms and condition and come march my fistula continued to leak fluid and then blood to which I was brought back in for another colonoscopy where they planned to insert a seton drain to allow it to continue to drain. Back on the ward I was told by my surgeon that they did not need to insert a seton after all as the opened up the firstula as it was so shallow ..........
........the first time I had been told that the "fistula" I had was not infact the tract that the abscess had formed -- is this even classed as a fistula then and if so did I infact have 2 fistulae then???
Well since being discharged late April this year I had been symptom free and attended my follow up appointment to be told I do infact have CROHN's that had now been confirmed by the pathologist report! I was then started on Azathioprine 25mg to be increased fortnightly by 25mg until I reached a total of 100mg with fortnightly blood tests. Which were then increased to monthly as my levels were "great".
Thankfully I did not experience any side effects and my symptoms stayed away. I returned after 4months on Azathioprine to see my consultant and was told everything was going great and didnt need to be seen for another 6 months but to link in with my specialist nurse should I have any issues.
At this point I thought as I was healthy and had been for 5months I thought I would ask about any complications starting a family would cause, with both my condition and medication.............part of me wished I hadn't asked as the understudy to my consultant said that I should remain on my aza for at least 12 months before being weaned of it and then remain off it for 6 months before even thinking about trying for a baby
shocked, devastated and breaking my heart she then thought to seek further advise from the lead consultant in clinic that day.............only to be told that there would be NO issues for me to not try for a family so long as I was no having a flare up!! :thumleft: Drying my tears I felt good walking out of the hospital and telling my partner the good news............short lived my happiness was....my symptoms started to reappear that very night!! After a phonecall to my SN he advised to double up on my Mezavant XL for 48 hours and then to contact him again to advise my condition - with the look to possible short term steriods.......48hrs up tomorrow and things are looking not too bad thankfully.Procedures:
4 x Colonoscopies
1 x MRI
1 possibly 2 Fistulae
1x anal abscess
Diagnosis: 2009-2011 proctitis
2012 Crohn's
Symptoms:
Bloating, trapped gas/wind, loose and blood stained BM's, extreme tiredness, spot breakouts, frequent feeling of needing to move bowels but only passing mucus and or tiny movements.
Medication:
Mezavant XL 2.4g daily or 4.8g in flare up
Azathioprine 100g daily
Ferrous Fumerate 210mg daily
So that is my story as well as I can remember it anyways
Cx
