Hi all,
I have been browsing this forum for a while but have only just decided to join and write a post. I am having a really rough time and I was hoping that some of you may be able to give me some advice or support.
I had to have some gynecological surgery in July 2011, I had endometriosis in most areas of my pelvis, ovaries, bladder, bowel and belly button and I also had an ovarian cyst. The surgery was a success and I believed my life would get back to normal.
Straight after my surgery I noticed a difference in my bowel. Literally, the first time I went to the toilet after I came out of surgery. I didn't think much of it, I thought that perhaps it wasn't working properly before and that now it is working properly. Then about 2 months after my surgery, I started getting a pain in my lower back. My gyne wasn't sure what it was so prescribed me some Mebeverine. This initially worked really well - to the point where if I missed a dose, the pain would come back. However after a few months the Mebeverine stopped being so effective. At this point my gyne decided to refer me to a GI specialist as she believed that because the Mebeverine worked, this indicated that there was a problem with my bowel. She was also concerned that we were focusing on the endometriosis so much that we would potentially miss something else going on.
I left it for about 6 months before I saw the GI doctor because I was hoping the pain would go. During this time my bowel movements became sporadic... I had a cycle of diarrhea, not being able to go, diarrhea, not being able to go etc on alternate days. I began to associate the lower back pain on the days where I was less able to go, and crampy pains on the days I had diarrhea. This pain was completly different to the pains I usually get with the endometriosis.
I finally saw the GI doctor in April this year. The first test he did was a stool test and because my calprotectin levels were elevated, I had to have a colonoscopy. During the colonoscopy he found 2 polyps and other areas of inflammation. Immediately after the colonoscopy my GI doctor thought the polyps were endometriosis, and advised me that if this was the case I would have to have part of my bowel removed. However, the biopsy results showed that one polyp was 'something that would have turned nasty if it was left' and the other polyp and areas of inflammation was 'crohns disease'. I then had a capsule endoscopy the week later which confirmed inflammation in my ileum and my proximal and distal small bowel.
I was put on Pentasa but it made me really unwell. My diarrhea worsened and I was going about 15 times a day. I also had awful nausea and began wetting the bed every night (which is something that isnt the norm for me!!!). After 5 weeks of trying to tolerate it, I had to come off it. My GI doctor prescribed me Merbentyl but this gave me blurred vision and awful sickness and had to come off it almost immediately. My GI doctor put me back onto Mebeverine and I am sure you could all imagine my frustrations at this point, that I was back on the medication I had already been on before I saw my GI doctor.
I tried to carry on like this for a while and also went on holiday with my friends, which was really difficult because I was so unwell. By this point my sporadic bowel movements were just constant diarrhea and I had cramping pains a lot of the time. I also got massively swollen whenever I ate and was in a lot of pain after eating. I saw my GI doctor but he told me there was nothing more he could do for me.
My job contract ended at the beginning of October and the day after I finished working I went to my GP asking her to do SOMETHING. I told her I didn't believe there was nothing more my GI doctor could do for me and that I couldn't carry on going to the toilet 15 times a day. At this point I was considering not eating at all any more to try and get some kind of relief. She put me on Prednisolone 40mg. I also asked her about referring me to a different GI doctor for a second opinion.
I felt AMAZING during my first week of taking the Prednisolone.. my poo had started coming out whole for the first time in as long as I could remember (sorry for the detail) and I was going to the toilet a lot less. My pain settled a lot and I no longer got massively swollen after eating. I thought that I had finally found the answer and that I was going to get better really quickly. I was so massively happy.
I had to start tapering the Prednisolone after just one week of taking it, dropping 5mg per week. As I began tapering, my symptoms came back and I soon realised that I was not going to get better so quickly. Going from feeling like I was never going to get better, to thinking I was almost cured in under the space of a few weeks was really difficult.
At this point I began to see a new GI doctor who picked up a few things my old GI doctor missed, like the fact I have a constant high temperature and a few odd things in my blood. My new GI doctor tested for other things my old one never looked at - e.g. parasites, stomach infections, other infections, bile acid malabsorption (SECAT test). He put me on Entocort 6mg as I was tapering down the Predisolone and also prescribed me small doses of Imodium liquid. He explained what my old GI didn't - that they wernt sure if I actually had Crohns as sometimes it is not so black and white.
Where I am at now is that I have been completely off the prednisolone for about a week, I am still taking Entocort 6mg daily and the Imodium does not have the effect it once did, i.e. I still went 9 times one day last week after taking triple dose. It seemed to help the first few times I took it but has since lost its effect. I still have a temperature that we can't make sense of and I am still going to the toilet on average 10 times a day and I am getting a lot of pain.
We re-did my calprotectin test about a month ago and it had elevated since the first time we did it, which was a surprise because since then I have had 2 polyps removed and have been on steriods.
My GI doctor now says that he isn't prepared to give me any more steriods before definatively knowing I have Crohns. He says he wants to see the inflammation for himself to be sure. We have done another calprotectin test and he says that if this is still raised, I have to have another colonoscopy and possibly a laparoscopy as we have some concerns that my bowel was damaged during my gyne surgery last year. I think that he doesn't trust my old GI doctor who did my last colonoscopy and wants to see for himself.
So now I am waiting to hear if I have to have another colonoscopy.
I wanted to post here because I am getting so incredibly frustrated and p1ssed off that I am getting nowhere. I feel that I am getting to the point again of feeling like no one can help me and the idea of having to live with my symptoms forever feels like hell, I don't know how I can. As I said earlier, I left my job in October and because of all of this, I haven't been able to go back to work. I really struggled during my job - I don't know how I got through to be honest, but now I am getting really frustrated that my life can't carry on at the moment. I turned 25 last week and feel like I have lost everything. I remember feeling really rubbish about things last year on my birthday after my gyne surgery when I first began to get the lower back pains.. I thought that life couldn't get worse, and after thinking about what I have been through in the year since, life has got a lot worse. What makes things feel worse is that I found out I may have to have a colonoscopy and laporoscopy the day before my birthday. I felt bad about things before my birthday anyway prior to finding this out and feel like I have now been cursed for moaning and feeling sorry for myself because things got worse again. Can you guys relate to the feeling of thinking that things can't get any worse but then they keep getting worse every time?
I feel like no one understands what I am going through and I constantly feel SO alone. I feel like I have no one. I have some great friends but they really don't get it and some of them have become so bored of my ongoing health issues over the past year and a half now that theyve gone. I still live at home with my parents but don't find them massively supportive at all. Most of the time when I complain I don't feel well my mum just ignores me. This morning I told her that I don't know how I can carry on like this and she told me shes fed up of me letting my frustrations out on her and that I am a bad daughter. Upon highlighting the fact that shes my mum and if she can't be there I've got no one, she told me I shouldn't let my frustrations out on anyone or I should find someone else. But I don't have anyone.
I've got to a point where I don't know what to do, both physically and emotionally. Emotionally I now can't see a way of getting better at all and I am so confused as to what is going on. I thought that raised calprotctein = IBD and normal calprotectin = IBS. I have no idea why there is so much uncertainty regarding my diagnosis when my calprotctein levels are raised. The thought of having another colonoscopy seems like hell and I feel like I am loosing everything in my life. I have so much going for me career wise and now I feel that I'm loosing that too. I have NEVER EVER EVER EVER EVER had ANY problems with my bowel what so ever. Poo-ing was something that just happened that I didn't think anything of.
I am so sorry for the awfully long moaney post but I was really hoping that someone out there would be able to understand how I feel. I am desperate for some empathy and support.
If you made it this far, thank you so much for reading
Em xx
I have been browsing this forum for a while but have only just decided to join and write a post. I am having a really rough time and I was hoping that some of you may be able to give me some advice or support.
I had to have some gynecological surgery in July 2011, I had endometriosis in most areas of my pelvis, ovaries, bladder, bowel and belly button and I also had an ovarian cyst. The surgery was a success and I believed my life would get back to normal.
Straight after my surgery I noticed a difference in my bowel. Literally, the first time I went to the toilet after I came out of surgery. I didn't think much of it, I thought that perhaps it wasn't working properly before and that now it is working properly. Then about 2 months after my surgery, I started getting a pain in my lower back. My gyne wasn't sure what it was so prescribed me some Mebeverine. This initially worked really well - to the point where if I missed a dose, the pain would come back. However after a few months the Mebeverine stopped being so effective. At this point my gyne decided to refer me to a GI specialist as she believed that because the Mebeverine worked, this indicated that there was a problem with my bowel. She was also concerned that we were focusing on the endometriosis so much that we would potentially miss something else going on.
I left it for about 6 months before I saw the GI doctor because I was hoping the pain would go. During this time my bowel movements became sporadic... I had a cycle of diarrhea, not being able to go, diarrhea, not being able to go etc on alternate days. I began to associate the lower back pain on the days where I was less able to go, and crampy pains on the days I had diarrhea. This pain was completly different to the pains I usually get with the endometriosis.
I finally saw the GI doctor in April this year. The first test he did was a stool test and because my calprotectin levels were elevated, I had to have a colonoscopy. During the colonoscopy he found 2 polyps and other areas of inflammation. Immediately after the colonoscopy my GI doctor thought the polyps were endometriosis, and advised me that if this was the case I would have to have part of my bowel removed. However, the biopsy results showed that one polyp was 'something that would have turned nasty if it was left' and the other polyp and areas of inflammation was 'crohns disease'. I then had a capsule endoscopy the week later which confirmed inflammation in my ileum and my proximal and distal small bowel.
I was put on Pentasa but it made me really unwell. My diarrhea worsened and I was going about 15 times a day. I also had awful nausea and began wetting the bed every night (which is something that isnt the norm for me!!!). After 5 weeks of trying to tolerate it, I had to come off it. My GI doctor prescribed me Merbentyl but this gave me blurred vision and awful sickness and had to come off it almost immediately. My GI doctor put me back onto Mebeverine and I am sure you could all imagine my frustrations at this point, that I was back on the medication I had already been on before I saw my GI doctor.
I tried to carry on like this for a while and also went on holiday with my friends, which was really difficult because I was so unwell. By this point my sporadic bowel movements were just constant diarrhea and I had cramping pains a lot of the time. I also got massively swollen whenever I ate and was in a lot of pain after eating. I saw my GI doctor but he told me there was nothing more he could do for me.
My job contract ended at the beginning of October and the day after I finished working I went to my GP asking her to do SOMETHING. I told her I didn't believe there was nothing more my GI doctor could do for me and that I couldn't carry on going to the toilet 15 times a day. At this point I was considering not eating at all any more to try and get some kind of relief. She put me on Prednisolone 40mg. I also asked her about referring me to a different GI doctor for a second opinion.
I felt AMAZING during my first week of taking the Prednisolone.. my poo had started coming out whole for the first time in as long as I could remember (sorry for the detail) and I was going to the toilet a lot less. My pain settled a lot and I no longer got massively swollen after eating. I thought that I had finally found the answer and that I was going to get better really quickly. I was so massively happy.
I had to start tapering the Prednisolone after just one week of taking it, dropping 5mg per week. As I began tapering, my symptoms came back and I soon realised that I was not going to get better so quickly. Going from feeling like I was never going to get better, to thinking I was almost cured in under the space of a few weeks was really difficult.
At this point I began to see a new GI doctor who picked up a few things my old GI doctor missed, like the fact I have a constant high temperature and a few odd things in my blood. My new GI doctor tested for other things my old one never looked at - e.g. parasites, stomach infections, other infections, bile acid malabsorption (SECAT test). He put me on Entocort 6mg as I was tapering down the Predisolone and also prescribed me small doses of Imodium liquid. He explained what my old GI didn't - that they wernt sure if I actually had Crohns as sometimes it is not so black and white.
Where I am at now is that I have been completely off the prednisolone for about a week, I am still taking Entocort 6mg daily and the Imodium does not have the effect it once did, i.e. I still went 9 times one day last week after taking triple dose. It seemed to help the first few times I took it but has since lost its effect. I still have a temperature that we can't make sense of and I am still going to the toilet on average 10 times a day and I am getting a lot of pain.
We re-did my calprotectin test about a month ago and it had elevated since the first time we did it, which was a surprise because since then I have had 2 polyps removed and have been on steriods.
My GI doctor now says that he isn't prepared to give me any more steriods before definatively knowing I have Crohns. He says he wants to see the inflammation for himself to be sure. We have done another calprotectin test and he says that if this is still raised, I have to have another colonoscopy and possibly a laparoscopy as we have some concerns that my bowel was damaged during my gyne surgery last year. I think that he doesn't trust my old GI doctor who did my last colonoscopy and wants to see for himself.
So now I am waiting to hear if I have to have another colonoscopy.
I wanted to post here because I am getting so incredibly frustrated and p1ssed off that I am getting nowhere. I feel that I am getting to the point again of feeling like no one can help me and the idea of having to live with my symptoms forever feels like hell, I don't know how I can. As I said earlier, I left my job in October and because of all of this, I haven't been able to go back to work. I really struggled during my job - I don't know how I got through to be honest, but now I am getting really frustrated that my life can't carry on at the moment. I turned 25 last week and feel like I have lost everything. I remember feeling really rubbish about things last year on my birthday after my gyne surgery when I first began to get the lower back pains.. I thought that life couldn't get worse, and after thinking about what I have been through in the year since, life has got a lot worse. What makes things feel worse is that I found out I may have to have a colonoscopy and laporoscopy the day before my birthday. I felt bad about things before my birthday anyway prior to finding this out and feel like I have now been cursed for moaning and feeling sorry for myself because things got worse again. Can you guys relate to the feeling of thinking that things can't get any worse but then they keep getting worse every time?
I feel like no one understands what I am going through and I constantly feel SO alone. I feel like I have no one. I have some great friends but they really don't get it and some of them have become so bored of my ongoing health issues over the past year and a half now that theyve gone. I still live at home with my parents but don't find them massively supportive at all. Most of the time when I complain I don't feel well my mum just ignores me. This morning I told her that I don't know how I can carry on like this and she told me shes fed up of me letting my frustrations out on her and that I am a bad daughter. Upon highlighting the fact that shes my mum and if she can't be there I've got no one, she told me I shouldn't let my frustrations out on anyone or I should find someone else. But I don't have anyone.
I've got to a point where I don't know what to do, both physically and emotionally. Emotionally I now can't see a way of getting better at all and I am so confused as to what is going on. I thought that raised calprotctein = IBD and normal calprotectin = IBS. I have no idea why there is so much uncertainty regarding my diagnosis when my calprotctein levels are raised. The thought of having another colonoscopy seems like hell and I feel like I am loosing everything in my life. I have so much going for me career wise and now I feel that I'm loosing that too. I have NEVER EVER EVER EVER EVER had ANY problems with my bowel what so ever. Poo-ing was something that just happened that I didn't think anything of.
I am so sorry for the awfully long moaney post but I was really hoping that someone out there would be able to understand how I feel. I am desperate for some empathy and support.
If you made it this far, thank you so much for reading
Em xx
and has not stopped the pain. I understand the wanting answers and feelin like you're the only one concerned for your health. Other people can't understand 
