- Joined
- Jan 17, 2011
- Messages
- 30
Back in June 2010 I started getting really bad stomach cramps and diarrhea. At first I put it down to a stomach bug. After 4/5 days my symptoms were slowly getting worse, so I went to my GP. He took urine and stool samples and put me on antibiotics, suspecting a gastric infection. The antibiotics did nothing, except cause me to vomit, and my symptoms continued to get worse. When I went back to my GP for the test results, he said that there was no sign of bacterial or viral infection in either of my samples. He decided to send more samples for testing, and tried me on a different type of antibiotics. Again, no progress. Back to my GP I went, and again my samples showed no sign of infection. So I was put on different antibiotics. I asked the dr if I would be OK to travel to Spain for a holiday, and he said yes. I foolishly went.
My appetite reduced significantly. I tried to make sure I was eating breakfast lunch and dinner, but I really couldn't eat much before the pain became unbarable. This resulted in me really lacking in energy, so I spent my first few days in Spain sleeping, not being able to do much else. My 4th day there I ended up in the local hospital. They took various samples and did blood tests, told me I had a fever and was dehydrated, and kept me in for 14 hours on various IV drips. I was diagnosed with Gastroenteritis, and sent away with more antibiotics, and a special diet. But no note to say I was too sick and had to travel home.
Anyway, I felt slightly better for the rest of the time, but I was eating was next to nothing, and was still having copious amount of diarrhea.
When I got home I went straight to my GP with the discharge letter from the hospital in Spain. He said he was happy to go along with the Spanish dr's diagnosis and told me to continue the antibiotics.
By this point, I could not eat or drink at all, anything I consumed gave me violent stomach cramps, and I would either throw up or have severe diarrhea. My vomit was orange, my stool were a milky white liquid, I was going to the toilet 15+ times a day. I'd lost 2 stone in the space of 10 days, but none of my clothes fit because my stomach was so swollen.
I know it seems silly that I let it get this far, but I didn't want to cause a fuss.
At the end of July (after about 6 weeks) I went to A&E. I found out that I was dehydrated and malnurished. I was in for around 10 days, various scans and tests were done. They found that I had a very active case of Crohns, which had caused a blockage in my colon, which in turn had prevented my digestive system from working properly. I was put on IV fluids and steroids, and once I was stable I was sent home. I was told I would have a follow up appointment in 6 weeks, and in the meantime to contact my GP with any problems. I was taking predisolone, calcichew d3 forte, lanzaprozole and paracetamol for the pain.
During that time I must have gone to my GP weekly, and he basically told me that he didn't know enough about the condition to help me, and that I just needed to wait for the hospital to send for me. I expressed my concern that I hadn't heard from them yet and asked him to follow it up, but he said that sometimes they leave it til last minute and they will get in touch with me. 7 weeks after discharge, I still hadn't heard from the hospital, so my GP finally agreed to call them. Turned out that for some reason or other I'd dropped off the radar and an appointment hadn't been arranged. There was a 4-6 week wait for non-emergency appointments.
During this time, I was experiencing bouts of diarrhea followed by bouts of constipation, and the pain in the left of my abdomen (where the stricture was) continued to increase. One night the pain was so bad that I called the emergency GP service in floods of tears saying that I didn't know what to do, because I was in the worst pain of my life, my GP said he couldn't do anything, my appointment with the specialist was still 3 weeks away, and paracetamol wasn't even touching the pain anymore. The (not so) clever so-and-so told me to try ibrupofen for the pain. I asked if it was OK to take that with Crohns, and they said that as I'd no history of internal bleeding or perforation, I'd be fine. So I took the ibruprofen. Which, to be fair, did help the pain for a short while.
A week later I went back to my GP practise, but asked to see another dr this time. I'd started passing air and mucous from my vagina and this was worrying me A LOT. She did an examination and said she expected a fistula, and call the hospital to get my specialist appointment brought forward. When I saw the Specialist, he was shocked that I'd been left on just prednisolone for so long, and he prescribed me mesalzine (pentasa) to be taken in addition to the prednisolone, as well as ciprofloxacin to try to help heal the potential fistula. He also scheduled me in for a CT scan, but the soonest they could get me in was 4 weeks later.
I was now taking predisolone, mesalazine, and ciprofloxacin as well as lanzaprozole, calcichew and paracetamol. And this cocktail really worked. I was rarely experiencing any of my previous symptoms, and I felt that I had much more energy than I'd had previously too. I felt great and the day of my CT scan (it was a Wednesday) I was planning to call work afterwards to let them know I'd be back the following Monday.
Except that they found a 5cm abscess attached to my intestine. I was kept in hospital for another 2 weeks... they reduce the steroids down a little at a time and I was put on IV fluids and coamoxiclav. I was also put on the essential diet - that was the worst week of my life. I simply could not tolerate the liquid substance they were trying to feed me. It made me violently sick. During this stay, I was told that I'd be having intestinal surgery, and prepared for the possibility of having a colonostomy. Further tests which showed that my intestine was doing pretty well, that the swelling I'd had in July had gone down significantly, and that there was no longer any tear or fistula. No intestinal operation for me. The bad news was that the abscess completely engulfed my left ovary and fallopian tube, and was attached on either side to my bladder and my intestine. And so I was passed onto the Gyno ward.
Both the Gastro drs and the Gyno drs agreed that operating to remove the abscess could cause significant long term damage to my ovary, intestine and bladder, so they decided to try to treat it conservatively. I was completely weaned off the steriods, and put on a high dose of coamoxiclav.
6 weeks later, scans show the abscess was 7cm, so they decided to operate. There was potential for me to lose all or part of my ovary, intestine and bladder, but as the medication wasn't working there was really no other option. Surgery was on 17th December and went fantastically. They managed to remove the abscess without damaging the intestine or bladder. The didn't have to remove the ovary, but it was quite badly damaged, they're hoping it will heal. They did have to remove some badly damaged tissue from my abdomen. I was discharged with a 7 day course of co-amoxiclav, an anti-inflammatory (I can't remember the name of), codeine, and of course, mesalazine. I was very sore and swollen but hopeful that I'd now be in remission.
On 22nd December my boyfriend had to call out an ambulance because I woke in paralysing pain. I was given regular painkillers, and had various blood tests and samples done. By the afternoon I had stabalised and was discharged that evening.
I had an appointment with my Crohns consultant on 4th January, where I was hoping it would be a case of "Well, you're stable and I can't see any problems, so I guess I'll see you again in 3 months!" What I was told was that yet again my inflammatory markers are sky high, suggesting the Crohns is still very active, so they want to get me back onto immune-suppressors asap (Azathioprine) However - they can't put me onto immune-suppressors until I have the all-clear that the abscess is completely gone. I have a CT scan booked for the 1st feb, and a meeting with the surgical consultant on 10th feb, so hopefully that's when I get the all clear. Once I'm on Azathioprine, I'll have to have regular meetings with the specialist nurse and tests so that if the abscess (or any infection) does come back they can catch it straight away.
I had been fine since then, and even started back at work. Then on Saturday I started having another flare up, and now I'm at a loss as to what to do. I'm taking paracetamol for the pain, but it doesn't do all that much to help. There's no point going to my GP, and I feel stupid going to the hospital when I already know what's causing the pain and why - it's the Crohns and it's because I'm not taking proper medication for it. But I can't afford to speand another month at home in pain waiting for my next appointment.
I called the Crohns nurses' advice line today and left a message for them to call me back. I've asked to make sure that everything is in place for meet to meet with one of them to start the Azathioprine as soon as possible, as I don't want to be forgotten about again. Hopefully I'll get a call back from them either later today or tomorrow. It's getting to the stage where it hurts to eat or drink again.
I'm feeling really low today. It's hard enough coming to terms with the fact that I'm never going to get better and that I just have to live with this, but to constantly be told that it's bad news is just really weighing me down. Just once I'd like to be told "you seem to be doing ok." I feel like I've lost control over my whole life and I hate it. I feel terrible complaining about this when I know that there are so many people out there worse off than me. I guess I just needed to get it off my chest a bit.
My appetite reduced significantly. I tried to make sure I was eating breakfast lunch and dinner, but I really couldn't eat much before the pain became unbarable. This resulted in me really lacking in energy, so I spent my first few days in Spain sleeping, not being able to do much else. My 4th day there I ended up in the local hospital. They took various samples and did blood tests, told me I had a fever and was dehydrated, and kept me in for 14 hours on various IV drips. I was diagnosed with Gastroenteritis, and sent away with more antibiotics, and a special diet. But no note to say I was too sick and had to travel home.
Anyway, I felt slightly better for the rest of the time, but I was eating was next to nothing, and was still having copious amount of diarrhea.
When I got home I went straight to my GP with the discharge letter from the hospital in Spain. He said he was happy to go along with the Spanish dr's diagnosis and told me to continue the antibiotics.
By this point, I could not eat or drink at all, anything I consumed gave me violent stomach cramps, and I would either throw up or have severe diarrhea. My vomit was orange, my stool were a milky white liquid, I was going to the toilet 15+ times a day. I'd lost 2 stone in the space of 10 days, but none of my clothes fit because my stomach was so swollen.
I know it seems silly that I let it get this far, but I didn't want to cause a fuss.
At the end of July (after about 6 weeks) I went to A&E. I found out that I was dehydrated and malnurished. I was in for around 10 days, various scans and tests were done. They found that I had a very active case of Crohns, which had caused a blockage in my colon, which in turn had prevented my digestive system from working properly. I was put on IV fluids and steroids, and once I was stable I was sent home. I was told I would have a follow up appointment in 6 weeks, and in the meantime to contact my GP with any problems. I was taking predisolone, calcichew d3 forte, lanzaprozole and paracetamol for the pain.
During that time I must have gone to my GP weekly, and he basically told me that he didn't know enough about the condition to help me, and that I just needed to wait for the hospital to send for me. I expressed my concern that I hadn't heard from them yet and asked him to follow it up, but he said that sometimes they leave it til last minute and they will get in touch with me. 7 weeks after discharge, I still hadn't heard from the hospital, so my GP finally agreed to call them. Turned out that for some reason or other I'd dropped off the radar and an appointment hadn't been arranged. There was a 4-6 week wait for non-emergency appointments.
During this time, I was experiencing bouts of diarrhea followed by bouts of constipation, and the pain in the left of my abdomen (where the stricture was) continued to increase. One night the pain was so bad that I called the emergency GP service in floods of tears saying that I didn't know what to do, because I was in the worst pain of my life, my GP said he couldn't do anything, my appointment with the specialist was still 3 weeks away, and paracetamol wasn't even touching the pain anymore. The (not so) clever so-and-so told me to try ibrupofen for the pain. I asked if it was OK to take that with Crohns, and they said that as I'd no history of internal bleeding or perforation, I'd be fine. So I took the ibruprofen. Which, to be fair, did help the pain for a short while.
A week later I went back to my GP practise, but asked to see another dr this time. I'd started passing air and mucous from my vagina and this was worrying me A LOT. She did an examination and said she expected a fistula, and call the hospital to get my specialist appointment brought forward. When I saw the Specialist, he was shocked that I'd been left on just prednisolone for so long, and he prescribed me mesalzine (pentasa) to be taken in addition to the prednisolone, as well as ciprofloxacin to try to help heal the potential fistula. He also scheduled me in for a CT scan, but the soonest they could get me in was 4 weeks later.
I was now taking predisolone, mesalazine, and ciprofloxacin as well as lanzaprozole, calcichew and paracetamol. And this cocktail really worked. I was rarely experiencing any of my previous symptoms, and I felt that I had much more energy than I'd had previously too. I felt great and the day of my CT scan (it was a Wednesday) I was planning to call work afterwards to let them know I'd be back the following Monday.
Except that they found a 5cm abscess attached to my intestine. I was kept in hospital for another 2 weeks... they reduce the steroids down a little at a time and I was put on IV fluids and coamoxiclav. I was also put on the essential diet - that was the worst week of my life. I simply could not tolerate the liquid substance they were trying to feed me. It made me violently sick. During this stay, I was told that I'd be having intestinal surgery, and prepared for the possibility of having a colonostomy. Further tests which showed that my intestine was doing pretty well, that the swelling I'd had in July had gone down significantly, and that there was no longer any tear or fistula. No intestinal operation for me. The bad news was that the abscess completely engulfed my left ovary and fallopian tube, and was attached on either side to my bladder and my intestine. And so I was passed onto the Gyno ward.
Both the Gastro drs and the Gyno drs agreed that operating to remove the abscess could cause significant long term damage to my ovary, intestine and bladder, so they decided to try to treat it conservatively. I was completely weaned off the steriods, and put on a high dose of coamoxiclav.
6 weeks later, scans show the abscess was 7cm, so they decided to operate. There was potential for me to lose all or part of my ovary, intestine and bladder, but as the medication wasn't working there was really no other option. Surgery was on 17th December and went fantastically. They managed to remove the abscess without damaging the intestine or bladder. The didn't have to remove the ovary, but it was quite badly damaged, they're hoping it will heal. They did have to remove some badly damaged tissue from my abdomen. I was discharged with a 7 day course of co-amoxiclav, an anti-inflammatory (I can't remember the name of), codeine, and of course, mesalazine. I was very sore and swollen but hopeful that I'd now be in remission.
On 22nd December my boyfriend had to call out an ambulance because I woke in paralysing pain. I was given regular painkillers, and had various blood tests and samples done. By the afternoon I had stabalised and was discharged that evening.
I had an appointment with my Crohns consultant on 4th January, where I was hoping it would be a case of "Well, you're stable and I can't see any problems, so I guess I'll see you again in 3 months!" What I was told was that yet again my inflammatory markers are sky high, suggesting the Crohns is still very active, so they want to get me back onto immune-suppressors asap (Azathioprine) However - they can't put me onto immune-suppressors until I have the all-clear that the abscess is completely gone. I have a CT scan booked for the 1st feb, and a meeting with the surgical consultant on 10th feb, so hopefully that's when I get the all clear. Once I'm on Azathioprine, I'll have to have regular meetings with the specialist nurse and tests so that if the abscess (or any infection) does come back they can catch it straight away.
I had been fine since then, and even started back at work. Then on Saturday I started having another flare up, and now I'm at a loss as to what to do. I'm taking paracetamol for the pain, but it doesn't do all that much to help. There's no point going to my GP, and I feel stupid going to the hospital when I already know what's causing the pain and why - it's the Crohns and it's because I'm not taking proper medication for it. But I can't afford to speand another month at home in pain waiting for my next appointment.
I called the Crohns nurses' advice line today and left a message for them to call me back. I've asked to make sure that everything is in place for meet to meet with one of them to start the Azathioprine as soon as possible, as I don't want to be forgotten about again. Hopefully I'll get a call back from them either later today or tomorrow. It's getting to the stage where it hurts to eat or drink again.
I'm feeling really low today. It's hard enough coming to terms with the fact that I'm never going to get better and that I just have to live with this, but to constantly be told that it's bad news is just really weighing me down. Just once I'd like to be told "you seem to be doing ok." I feel like I've lost control over my whole life and I hate it. I feel terrible complaining about this when I know that there are so many people out there worse off than me. I guess I just needed to get it off my chest a bit.
