Hi
I've been on this forum reading all the insightful posts in helping me get through what has been a really difficult 2 yrs. I've had crohns for 11 yrs. I also have psc (primary sclerosis cholangitis) which is narrowing of the bile ducts and can be associated with crohns. In my journey I've gone through pretty much all the crohns meds. The first few years I was coping fine, playing sport traveling the world and dealing with the severe diarrhea.
Then at the Start of 2010 things started to go down hill. My haemoglobin and iron levels were very low. After doing a colonoscopy i was amazed at the damage in the large intestine. 80% of the colon was affected with pseudo polyps.
At this stage with a low hb and low iron life was getting difficult. No energy , heart palpations, dizziness ,my hb got down to 48 (normal 130). The nurses who would arrange my infusion could not believe how I was still working and functioning. So my main issue was that from the start of 2010 till 1 month ago I was having blood transfusions and iron infusions every 4-6 weeks. My gastro and hematologist were puzzled. Many of their patients have crohns and severe bleeding but don't need such regular infusions. My body was nit retaining the iron. Absorption in the gut is obviously a problem but the iv infusion eliminates the absorption issue.
In June 2011 I went on holidays with my wife for 5 weeks making sure I had the transfusions the day before I left to ensure I was ok for the 5 weeks. As it turned out I was in Croatia for only 2 weeks. Fatigue and tiredness was bad. I was bleeding more than usual and my feet were very swollen. As it turns out I went to the docs and did my bloods. My hb dropped to 60. So not only was I feeling Terrible but our holiday was now over. The problem was your not allowed to fly with a haemoglobin less than 85 so I ended up in a hospital in split getting 3 units of blood and a 2 night stay (no insurance of course due to pre existing medical condition). The conditions were terrible. It was an expensive 2 week holiday to say the least because we also needed to buy another ticket to get home ASAP.
After 2 pill cams , bone marrow biopsy and another colonoscopy in aug 2011 my gastro suggested surgery.
After getting a second opinion from a well respected surgeon I was referred to another gastro and we decided to give infliximab a go. My previous gastro never tried it because he tonight it may make my liver worse. I was amazed when my new gastro said he spoke to my olg specialist, who said he had no qualms about trying, despite me asking for it on 3 separate occasions because I did not want the prednisilone iv treatment. I had 2 infusions of infliximab to no avail. I was feeling terrible , hb and iron still dropping, and now my albumin was also low ((10-normal 40).
I finally called my gastro and said I can't live like this anymore. My life is miserable. I'm bed bound, don't want to do anything, go anywhere, nausea. My threshold for pain is very high id like to think but I think my gastro then realized we need to do something. I was admitted to hospital a few days later. As he was my new gastro he did a whole heap of MRI, ultrasounds, and performed a colonoscopy. He then also decided along with the colorectal surgeon that a sub total colectomy would be my best option. They decided to leave the rectum as it was unaffected by the crohns which gives me the option for a reversal later on down the track.
So in late November I had the surgery. My surgeon with over 30 yrs experience said it was one of the worst affected colons he had seen and I would feel like a new person. He was right. 2 days after surgery I felt immediately better. I was on tpn for about 2 weeks so my liver results went through the roof but that has since settled, although still abnormal( has been for 12 yrs). I started to eat after 8 days when my bowel decided to wake up.
Now 4 weeks after surgery ( 3 weeks in hospital) I'm feeling great. I dropped down to 61.6kg (I'm 6'2). 12 days after getting home I'm 66. My hb is 114. My albumin is 38. I've got more energy.
I've dealt with the ileostomy fine mentally. Originally my first gastro specialist mentioned a bag about a year ago and I said no way! In the end I thought if it makes me feel better than I need to. Apart from a large output ( empty 10-15 times a day) and the paranoia for leaks at night etc I'm doing ok. I also get a lot of gas filling the bag but hopefully it will settle. I'm thinking my huge appetite and 3-4 liters of fluids a day could be contributing to the problem so hopefully after I gain some more weight I can peg back the food consumption.
It amazes me how one organ can drag a person down. It was causing my body havoc, obviously my body could not get ahead with such a severe colon, now that it's removed I finally feel like I'm ahead and healing.
Hope this can give someone an insight as many of your stories have for me.
Cheers
I've been on this forum reading all the insightful posts in helping me get through what has been a really difficult 2 yrs. I've had crohns for 11 yrs. I also have psc (primary sclerosis cholangitis) which is narrowing of the bile ducts and can be associated with crohns. In my journey I've gone through pretty much all the crohns meds. The first few years I was coping fine, playing sport traveling the world and dealing with the severe diarrhea.
Then at the Start of 2010 things started to go down hill. My haemoglobin and iron levels were very low. After doing a colonoscopy i was amazed at the damage in the large intestine. 80% of the colon was affected with pseudo polyps.
At this stage with a low hb and low iron life was getting difficult. No energy , heart palpations, dizziness ,my hb got down to 48 (normal 130). The nurses who would arrange my infusion could not believe how I was still working and functioning. So my main issue was that from the start of 2010 till 1 month ago I was having blood transfusions and iron infusions every 4-6 weeks. My gastro and hematologist were puzzled. Many of their patients have crohns and severe bleeding but don't need such regular infusions. My body was nit retaining the iron. Absorption in the gut is obviously a problem but the iv infusion eliminates the absorption issue.
In June 2011 I went on holidays with my wife for 5 weeks making sure I had the transfusions the day before I left to ensure I was ok for the 5 weeks. As it turned out I was in Croatia for only 2 weeks. Fatigue and tiredness was bad. I was bleeding more than usual and my feet were very swollen. As it turns out I went to the docs and did my bloods. My hb dropped to 60. So not only was I feeling Terrible but our holiday was now over. The problem was your not allowed to fly with a haemoglobin less than 85 so I ended up in a hospital in split getting 3 units of blood and a 2 night stay (no insurance of course due to pre existing medical condition). The conditions were terrible. It was an expensive 2 week holiday to say the least because we also needed to buy another ticket to get home ASAP.
After 2 pill cams , bone marrow biopsy and another colonoscopy in aug 2011 my gastro suggested surgery.
After getting a second opinion from a well respected surgeon I was referred to another gastro and we decided to give infliximab a go. My previous gastro never tried it because he tonight it may make my liver worse. I was amazed when my new gastro said he spoke to my olg specialist, who said he had no qualms about trying, despite me asking for it on 3 separate occasions because I did not want the prednisilone iv treatment. I had 2 infusions of infliximab to no avail. I was feeling terrible , hb and iron still dropping, and now my albumin was also low ((10-normal 40).
I finally called my gastro and said I can't live like this anymore. My life is miserable. I'm bed bound, don't want to do anything, go anywhere, nausea. My threshold for pain is very high id like to think but I think my gastro then realized we need to do something. I was admitted to hospital a few days later. As he was my new gastro he did a whole heap of MRI, ultrasounds, and performed a colonoscopy. He then also decided along with the colorectal surgeon that a sub total colectomy would be my best option. They decided to leave the rectum as it was unaffected by the crohns which gives me the option for a reversal later on down the track.
So in late November I had the surgery. My surgeon with over 30 yrs experience said it was one of the worst affected colons he had seen and I would feel like a new person. He was right. 2 days after surgery I felt immediately better. I was on tpn for about 2 weeks so my liver results went through the roof but that has since settled, although still abnormal( has been for 12 yrs). I started to eat after 8 days when my bowel decided to wake up.
Now 4 weeks after surgery ( 3 weeks in hospital) I'm feeling great. I dropped down to 61.6kg (I'm 6'2). 12 days after getting home I'm 66. My hb is 114. My albumin is 38. I've got more energy.
I've dealt with the ileostomy fine mentally. Originally my first gastro specialist mentioned a bag about a year ago and I said no way! In the end I thought if it makes me feel better than I need to. Apart from a large output ( empty 10-15 times a day) and the paranoia for leaks at night etc I'm doing ok. I also get a lot of gas filling the bag but hopefully it will settle. I'm thinking my huge appetite and 3-4 liters of fluids a day could be contributing to the problem so hopefully after I gain some more weight I can peg back the food consumption.
It amazes me how one organ can drag a person down. It was causing my body havoc, obviously my body could not get ahead with such a severe colon, now that it's removed I finally feel like I'm ahead and healing.
Hope this can give someone an insight as many of your stories have for me.
Cheers
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