Hello everyone!
I'm new to the forum. I have been reading it for a couple of years (what a great source of advice!) but now I want to take part too.
I have been on and off sick since I was about 9 years old, including taking time off school and university. I would have months of diarrhea, nausea the sort that feels like it is running through my veins from head to toe, and no appetite, and felt "strange" (that is hard to explain to the doctor). I was sent to psychologists, and for bracing holidays at the seaside.
Now I am 41. 4 years ago I was pregnant with daughter #2 and at about 7 weeks I started getting sharp pains in the lower left side and had urgency for the toilet. That continued and got worse with abdominal discomfort on the left side and trips to the toilet several times in a couple of hours. I was so fatigued, nauseous (but not pregnancy nausea), and lost my concentration. I gave up my job because I could not function. I had to lie down in the street a few times, my body just had no strength even to walk short distances.
Luckily the baby was reasonably healthy, but my symptoms got worse after birth. I was running a slight fever (38C) and was having Bms up to 8 times a day. I spent most of the time in bed feeling too sick and tired to do anything.
About 7 months after giving birth my fever shot up to more than 39C and I was running to the toilet about 30 times a day. My GP sent me to A+E (ER) and they sent me home after checking for sepsis. At the follow-up I said that I was still not well and the consultant asked for a colonoscopy. That came back positive for left sided colitis consistent with a pattern of Crohns, but the biopsy was not conclusive.
By this time my weight was down to 40 kg (BMI of 14). The consultant gastroenterologist (who did not do the colonoscopy) said it was in my head, I was anorexic and I needed to see a psychiatrist. I was so shocked but I was too ill to say or do anything. Does that sound familiar?
Roll on one year and much internet searching to find ways to self-treat bowel inflammation. It helped, but not enough. I managed to see the gastroenterologist who did the colonoscopy off-record (the man deserves a medal), and he suggested starting Asacol treatment to see if that helped. It did, and my GP recently gave me 14 days of Pentasa suppositories to help treat the morning pain and urgency. That helped too!
Now I have just seen the same gastroenterologist officially this time, and he wants to do another colonoscopy (I prefer a sigmoidoscopy) to see how the inflammation is now. He said that because I still have some pain (and some joint pain and some fatigue) maybe it would be better to change the treatment, but we will wait and see the results of the oscopy first.
So that is it, wait and see. I am in a far better place than I was 2 or 3 years ago, when I actually would have been quite happy to die. It sounds terrible, but I have had a good life and I am very grateful for that. Now I am still underweight, tired, and a long way from leading a full and active life as I would wish, but maybe I need to accept it will always be like that, and I am not getting any younger.
My biggest problem in all of this is having a partner who does not believe in illness, he has no empathy or sympathy for my situation, and no interest in finding out what is wrong. I would love someone to get in touch if they are in a similar situation. I live in a different country to my family and feel like I have no support nearby - although I do have friends I can rely on for those really bad days when I need help with the children.
:sign0144:
I'm new to the forum. I have been reading it for a couple of years (what a great source of advice!) but now I want to take part too.
I have been on and off sick since I was about 9 years old, including taking time off school and university. I would have months of diarrhea, nausea the sort that feels like it is running through my veins from head to toe, and no appetite, and felt "strange" (that is hard to explain to the doctor). I was sent to psychologists, and for bracing holidays at the seaside.
Now I am 41. 4 years ago I was pregnant with daughter #2 and at about 7 weeks I started getting sharp pains in the lower left side and had urgency for the toilet. That continued and got worse with abdominal discomfort on the left side and trips to the toilet several times in a couple of hours. I was so fatigued, nauseous (but not pregnancy nausea), and lost my concentration. I gave up my job because I could not function. I had to lie down in the street a few times, my body just had no strength even to walk short distances.
Luckily the baby was reasonably healthy, but my symptoms got worse after birth. I was running a slight fever (38C) and was having Bms up to 8 times a day. I spent most of the time in bed feeling too sick and tired to do anything.
About 7 months after giving birth my fever shot up to more than 39C and I was running to the toilet about 30 times a day. My GP sent me to A+E (ER) and they sent me home after checking for sepsis. At the follow-up I said that I was still not well and the consultant asked for a colonoscopy. That came back positive for left sided colitis consistent with a pattern of Crohns, but the biopsy was not conclusive.
By this time my weight was down to 40 kg (BMI of 14). The consultant gastroenterologist (who did not do the colonoscopy) said it was in my head, I was anorexic and I needed to see a psychiatrist. I was so shocked but I was too ill to say or do anything. Does that sound familiar?
Roll on one year and much internet searching to find ways to self-treat bowel inflammation. It helped, but not enough. I managed to see the gastroenterologist who did the colonoscopy off-record (the man deserves a medal), and he suggested starting Asacol treatment to see if that helped. It did, and my GP recently gave me 14 days of Pentasa suppositories to help treat the morning pain and urgency. That helped too!
Now I have just seen the same gastroenterologist officially this time, and he wants to do another colonoscopy (I prefer a sigmoidoscopy) to see how the inflammation is now. He said that because I still have some pain (and some joint pain and some fatigue) maybe it would be better to change the treatment, but we will wait and see the results of the oscopy first.
So that is it, wait and see. I am in a far better place than I was 2 or 3 years ago, when I actually would have been quite happy to die. It sounds terrible, but I have had a good life and I am very grateful for that. Now I am still underweight, tired, and a long way from leading a full and active life as I would wish, but maybe I need to accept it will always be like that, and I am not getting any younger.
My biggest problem in all of this is having a partner who does not believe in illness, he has no empathy or sympathy for my situation, and no interest in finding out what is wrong. I would love someone to get in touch if they are in a similar situation. I live in a different country to my family and feel like I have no support nearby - although I do have friends I can rely on for those really bad days when I need help with the children.
:sign0144: