So I’ve been meaning to post my story on many occasions over the past few months. As a regular lurker, I have learnt so much from all the contributors on this forum, and hope that maybe my story can help someone, too. A warning though – this is a long post, sorry!
The Bad:
So my story begins in December of last year when I started suffering from abdominal pain – the pain was generalised, mostly in the area of my belly button, and sometimes in my lower abdomen; it felt different to other pain that I had experienced previously when having bouts of gastro or period pain, which made me think I should see a doctor. I went to a GP who said I probably had IBS and asked if I had been experiencing any stress of late. I told him that I was currently on leave, and feeling very relaxed! He sent me away with some anti-spasmodic medication. The pain abated, but would re-surface from time to time.
A while later, I consulted with another GP who also said I probably had IBS. By this stage, the pain was getting worse. I would spend my weekends in bed (in retrospect, this was probably because of the heavy meals I had been eating in comparison to the rest of the week), and regularly waking up during the night with pain. Instinctively, I knew there was something more serious brewing. I was also due to go on an overseas trip, so I really wanted to get some answers and appropriate treatment. I went back to the GP. He still said I most likely had IBS, but said if I was anxious about going away, he would refer me to a specialist to rule out anything else. He also thought I could possibly have a stomach ulcer and suggested I go for a blood test for H. Pylori and an ultrasound. By that stage I had done some research, and I asked him if I could possibly have Crohn’s. He pooh-poohed the idea (pardon the bad pun), saying my symptoms weren’t bad enough! (I’ve never had chronic diarrhoea and have mostly bordered on being constipated.) The ultrasound didn’t show anything amiss (the radiographer wasn’t terribly thorough), and I remember feeling emotional at that point – the radiographer tried to make me feel better by saying it was probably IBS from which she also suffered from time to time!
By this stage, I was beginning to doubt my mental health – I thought that the symptoms that I was experiencing were psychosomatic, and that my tiredness and general malaise were due to mild depression and inability to get-my-act-together. I remember having the blood test, convinced it wouldn’t reveal anything. Well, the GP on receiving my results sent them (and me) straight to the GI. Turns out my tests were “grossly abnormal” as the GI put it. No issues with H. Pylori or low thyroid as suspected by GP, but my CRP and ESR counts were “critically high” and I was also clearly anaemic. The GI said he suspected Crohn’s and booked me for a colonoscopy as soon as he could, a couple of days later. He also weighed me at our initial consultation, and it turns out that I had lost 10% of my body weight. I’d never paid attention to my weight as it had never really fluctuated, and I don’t have a scale at home – I had gathered that I had lost some weight, but not that much!
The colonoscopy revealed ulceration at the start of my colon, just before my ileocecal valve. The GI couldn’t look inside my ileum because of the inflammation. By this stage I was in disbelief, wondering if I truly was objectively sick, but a few days later the biopsies came back, and I finally had an answer.
The GI prescribed Prednisone (45mg tapering 5mg per week), Pentasa and iron tablets. The Prednisone worked virtually straight away – I felt so much better. I no longer had pain and felt energised (bordering on manic!), which after months of chronic lethargy felt wonderful. Managed to go overseas (Paris!) two weeks after my diagnosis, and had a fantastic time, running around like the energiser bunny, taking in the sights and sampling delicious French cuisine without any ill effects!
The Ugly:
Alas, my Pred high was shortlived, and once I had tapered down to 15mg, my symptoms started returning. I thought this was just my body weaning itself off the Pred. But by the time I reached 5mg, I was in as much pain, if not worse, than before. Then I developed severe pain in my lower abdomen and had symptoms of a bladder infection (tested negative). Had another blood test – this time my CRP was through the roof. Went back to GI and was sent for a CT scan straight away, which showed "mucosal enhancement and extensive adjacent fibrofatty infiltration of the mesentry", affecting the distal 20cm of my ileum with further thickening of the caecum. (GI said the disease was well-established and must have been active for a long time, despite presenting with symptoms only in December.) It also showed what looked like a very small, evolving abscess, adjacent to my bladder, although the radiologist and GI weren’t entirely sure. No fistula was detected at this stage. This was the first time that the possibility of surgery was mentioned. I was prescribed a ten-day course of antibiotics and Tramacet for the pain.
The antibiotics never really resolved the abdominal pain, and the issues with my bladder continued (painful urination). I was sent for an ultrasound which showed that the abscess was still there. The GI consulted briefly with a surgeon, but because of the precarious position of the abscess, having it drained was not an option. This time I was admitted to hospital for a five-day course of intravenous antibiotics, followed by a ten-day course of oral Augmentin. Initially I felt better: my CRP levels came down, and an ultrasound showed that that the abscess was resolving. After the course of antibiotics, I was prescribed Azathioprine (building up to 125mg a day) as well as Entocort. Although I felt relatively better, I was certainly not pain free – I was still experiencing painful urination most of the time as well as abdominal pain. At this stage, not a day was going by without me having to take at least one Tramacet. My sleep was disturbed and I was waking up on average four times a night to urinate. After two months of waiting for things to improve, and the drugs to kick in, I went back to the GI for another ultrasound. Turns out the abscess that had looked to be resolving was back and bigger than before. This time my GI said that surgery was my only option.
The Good:
So off I went to consult with a surgeon. He said that he not only wanted to sort out the abscess, but also do a resection and remove the diseased 20cm of ileum. He said I have localised, fistulising Crohn’s which called for a surgical approach. He told me I had a 50% chance of being in remission for the next ten years, and said there was a very small chance that I might have a stoma. Consulted with him on a Friday, and was scheduled for surgery the following Monday. All went smoothly, no stoma or other complications – the abscess was sorted out, along with a fistula that had begun to track into my thickened bladder wall. The surgery was performed laparoscopically, plus some cutting (three keyholes and an 8cm incision along my bikini-line).
Although everything went smoothly and without complications, I won’t lie; the experience of undergoing surgery was traumatic (physically and emotionally). I spent a tough week in hospital. The second week at home was also somewhat challenging. However, after two and a half weeks I began to feel like my old self again, and three weeks after surgery I returned to work feeling positive and energised.
It’s now five weeks post-surgery and I feel much better than before: I stopped taking any pain medication two and a half weeks after surgery – after popping Tramacet for two months solid this was something of a revelation – and I currently have only a little discomfort around my incision sites from time to time. I’m sleeping through the night again, and I’m no longer waking multiple times to urinate! I also feel a renewed sense of vitality and general well-being.
I'm hoping that the clinical remission that surgery has put me in will last, and that I'll be part of the lucky 50%. I'm meeting with my GI in a few days' time to discuss prophylactic medication – I'm hedging my bets with this disease!
So what have I learnt over the six months since my diagnosis?
1.) Listen to your gut! If you’re experiencing pain that is out of the ordinary seek answers, and get referred to a specialist. Also a simple, comprehensive blood test will normally reveal if anything is seriously amiss.
2.) Don’t think that surgery should be a last resort if you have Crohn’s in one location. The 20cm of my small intestine that was removed was a massed mess, and I don’t see how drugs could have helped me long term.
3.) Once you’ve found a reputable specialist/surgeon, don’t double-think their treatment options. Have faith in their professionalism.
4.) Educate yourself as much as possible about this disease.
5.) Believe that your health will improve.
That's about it, for now. Best wishes to all!
The Bad:
So my story begins in December of last year when I started suffering from abdominal pain – the pain was generalised, mostly in the area of my belly button, and sometimes in my lower abdomen; it felt different to other pain that I had experienced previously when having bouts of gastro or period pain, which made me think I should see a doctor. I went to a GP who said I probably had IBS and asked if I had been experiencing any stress of late. I told him that I was currently on leave, and feeling very relaxed! He sent me away with some anti-spasmodic medication. The pain abated, but would re-surface from time to time.
A while later, I consulted with another GP who also said I probably had IBS. By this stage, the pain was getting worse. I would spend my weekends in bed (in retrospect, this was probably because of the heavy meals I had been eating in comparison to the rest of the week), and regularly waking up during the night with pain. Instinctively, I knew there was something more serious brewing. I was also due to go on an overseas trip, so I really wanted to get some answers and appropriate treatment. I went back to the GP. He still said I most likely had IBS, but said if I was anxious about going away, he would refer me to a specialist to rule out anything else. He also thought I could possibly have a stomach ulcer and suggested I go for a blood test for H. Pylori and an ultrasound. By that stage I had done some research, and I asked him if I could possibly have Crohn’s. He pooh-poohed the idea (pardon the bad pun), saying my symptoms weren’t bad enough! (I’ve never had chronic diarrhoea and have mostly bordered on being constipated.) The ultrasound didn’t show anything amiss (the radiographer wasn’t terribly thorough), and I remember feeling emotional at that point – the radiographer tried to make me feel better by saying it was probably IBS from which she also suffered from time to time!
By this stage, I was beginning to doubt my mental health – I thought that the symptoms that I was experiencing were psychosomatic, and that my tiredness and general malaise were due to mild depression and inability to get-my-act-together. I remember having the blood test, convinced it wouldn’t reveal anything. Well, the GP on receiving my results sent them (and me) straight to the GI. Turns out my tests were “grossly abnormal” as the GI put it. No issues with H. Pylori or low thyroid as suspected by GP, but my CRP and ESR counts were “critically high” and I was also clearly anaemic. The GI said he suspected Crohn’s and booked me for a colonoscopy as soon as he could, a couple of days later. He also weighed me at our initial consultation, and it turns out that I had lost 10% of my body weight. I’d never paid attention to my weight as it had never really fluctuated, and I don’t have a scale at home – I had gathered that I had lost some weight, but not that much!
The colonoscopy revealed ulceration at the start of my colon, just before my ileocecal valve. The GI couldn’t look inside my ileum because of the inflammation. By this stage I was in disbelief, wondering if I truly was objectively sick, but a few days later the biopsies came back, and I finally had an answer.
The GI prescribed Prednisone (45mg tapering 5mg per week), Pentasa and iron tablets. The Prednisone worked virtually straight away – I felt so much better. I no longer had pain and felt energised (bordering on manic!), which after months of chronic lethargy felt wonderful. Managed to go overseas (Paris!) two weeks after my diagnosis, and had a fantastic time, running around like the energiser bunny, taking in the sights and sampling delicious French cuisine without any ill effects!
The Ugly:
Alas, my Pred high was shortlived, and once I had tapered down to 15mg, my symptoms started returning. I thought this was just my body weaning itself off the Pred. But by the time I reached 5mg, I was in as much pain, if not worse, than before. Then I developed severe pain in my lower abdomen and had symptoms of a bladder infection (tested negative). Had another blood test – this time my CRP was through the roof. Went back to GI and was sent for a CT scan straight away, which showed "mucosal enhancement and extensive adjacent fibrofatty infiltration of the mesentry", affecting the distal 20cm of my ileum with further thickening of the caecum. (GI said the disease was well-established and must have been active for a long time, despite presenting with symptoms only in December.) It also showed what looked like a very small, evolving abscess, adjacent to my bladder, although the radiologist and GI weren’t entirely sure. No fistula was detected at this stage. This was the first time that the possibility of surgery was mentioned. I was prescribed a ten-day course of antibiotics and Tramacet for the pain.
The antibiotics never really resolved the abdominal pain, and the issues with my bladder continued (painful urination). I was sent for an ultrasound which showed that the abscess was still there. The GI consulted briefly with a surgeon, but because of the precarious position of the abscess, having it drained was not an option. This time I was admitted to hospital for a five-day course of intravenous antibiotics, followed by a ten-day course of oral Augmentin. Initially I felt better: my CRP levels came down, and an ultrasound showed that that the abscess was resolving. After the course of antibiotics, I was prescribed Azathioprine (building up to 125mg a day) as well as Entocort. Although I felt relatively better, I was certainly not pain free – I was still experiencing painful urination most of the time as well as abdominal pain. At this stage, not a day was going by without me having to take at least one Tramacet. My sleep was disturbed and I was waking up on average four times a night to urinate. After two months of waiting for things to improve, and the drugs to kick in, I went back to the GI for another ultrasound. Turns out the abscess that had looked to be resolving was back and bigger than before. This time my GI said that surgery was my only option.
The Good:
So off I went to consult with a surgeon. He said that he not only wanted to sort out the abscess, but also do a resection and remove the diseased 20cm of ileum. He said I have localised, fistulising Crohn’s which called for a surgical approach. He told me I had a 50% chance of being in remission for the next ten years, and said there was a very small chance that I might have a stoma. Consulted with him on a Friday, and was scheduled for surgery the following Monday. All went smoothly, no stoma or other complications – the abscess was sorted out, along with a fistula that had begun to track into my thickened bladder wall. The surgery was performed laparoscopically, plus some cutting (three keyholes and an 8cm incision along my bikini-line).
Although everything went smoothly and without complications, I won’t lie; the experience of undergoing surgery was traumatic (physically and emotionally). I spent a tough week in hospital. The second week at home was also somewhat challenging. However, after two and a half weeks I began to feel like my old self again, and three weeks after surgery I returned to work feeling positive and energised.
It’s now five weeks post-surgery and I feel much better than before: I stopped taking any pain medication two and a half weeks after surgery – after popping Tramacet for two months solid this was something of a revelation – and I currently have only a little discomfort around my incision sites from time to time. I’m sleeping through the night again, and I’m no longer waking multiple times to urinate! I also feel a renewed sense of vitality and general well-being.
I'm hoping that the clinical remission that surgery has put me in will last, and that I'll be part of the lucky 50%. I'm meeting with my GI in a few days' time to discuss prophylactic medication – I'm hedging my bets with this disease!
So what have I learnt over the six months since my diagnosis?
1.) Listen to your gut! If you’re experiencing pain that is out of the ordinary seek answers, and get referred to a specialist. Also a simple, comprehensive blood test will normally reveal if anything is seriously amiss.
2.) Don’t think that surgery should be a last resort if you have Crohn’s in one location. The 20cm of my small intestine that was removed was a massed mess, and I don’t see how drugs could have helped me long term.
3.) Once you’ve found a reputable specialist/surgeon, don’t double-think their treatment options. Have faith in their professionalism.
4.) Educate yourself as much as possible about this disease.
5.) Believe that your health will improve.
That's about it, for now. Best wishes to all!
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