Hi,
I wanted to firstly say - what a great site! It is so good to come here and read similar stories and know that I am not alone!
Secondly I wanted to post my story, mainly as a warning on:
1. Ignoring problems
2. Staying with a doctor you don't feel is right for you
I was having problems long before I was diagnosed. However, it crept up very slowly so I really just thought this was normal. Mainly it was issues with diarrhea.. I was also diagnosed with Depression and spent a two year period working on this - which is now managed well.
About 10 years ago I had an abscess on my butt! I was so embarrassed I didn't immediately go to the doctor and by the time I did it was the size of my fist and needed surgery. Unfortunately my doctor and the surgeon did not ask any questions to determine if the abscess could have been a result of anything more than an ingrown hair. I didn't ask any questions because I didn't know any better.
About 2 years later, I was on holiday with a friend. I paid all this money and spend the whole week at or near the hotel room as I was to scared to leave in case I needed to go the toilet. I had bad "nappy rash" from the diarrhea.
After ruining my friends holiday (as she stayed with me the whole time), I went straight to the doctor.
I was sent to a specialist and 48 hours later I found out I had alcerative colitis and crohns.
For the first 12 months every time I went to this specialist she would ask me if I was still smoking (unfortunately yes and I do know this is terrible for this disease). She didn't listen to anything I had to say after that. I had a tender spot on my buttock and eventually insisted that she do something after about 4-5 visits. I had an MRI and when I looked at the results I could see a white section where I was experiencing issues. My Specialist said everything was fine. I eventually managed to get an appointment while my butt was very tender and weeping. She finally realised something was wrong and sent me to a surgeon. I had a fistula. This had been there for nearly 12 months and had caused some damage to the inner muscles around my anal canal.
After the first surgery to fix this, it came back. I had to have a drainage tube inserted and when it was removed it came back again. During this time I was extremely tired - abnormally so. It got to the point where all my energy was focused on getting to work and then home. By the time I got home I couldn't be bothered going to the kitchen to get a glass of water.
My Specialist was not listening and my doctor kept saying you have Crohns and Depression - this is normal.
I eventually got sick of feeling so bad and went to a new GP. I asked her to pretend I didn't have either health issue and start from scratch. She found I had dangerously low B12 and Iron. She also suggested I try a new Specialist.
After and iron infusion and 6 B12 shots over a period of 6 weeks, I was starting to feel, what I would classify, as human.
My new Specialist changed my medication, it was 6MP (was previously on Pentasa). I had trouble getting on to the drug due to side effects. Mainly hayfever type symptoms, nausea and tiredness. After slowly increasing the drug to 50mg, I started to get a lessoning in the diarrhea.
However, I was still experiencing boughts of nausea and tiredness. Over a 12 month period it was getting progressively worse. My Specialist was very good and believed me and we tried various tests, etc. I had a breath test and found I have an intolerance to fructose. However a change in diet still did not make me feel better. Just reduced some of the sharp pains I sometimes get in the tummy before I go to the toilet. Eventually we decided to do another colonoscopy. The doc found that the crohns and colitis was, in effect, gone - the 6MP had done it's job. However I summised that the side effects of 6MP was the problem and he agreed I could 1/2 the dose. I also immediately began to feel better.
I suppose my point with the above saga, is to make sure you find a doctor and Specialist you feel comfortable with and believes you when you talk about your issues. Not listening to my gut could have permanently damaged my anal muscles causing permanent leakage. I also could have been very sick with the lack of iron and B12.
I still don't feel great but I must say I know I am very fortunate compared to many out there! I still experience tiredness and find it hard to engage with people because it is exhausting being social. I have minor bowel issues fluctuating between feeling slightly constipated to diarrhea for a couple of days at a time.
I find with the scar tissue around my butt I sometimes have residue and leakage from a bowel movement and I find this very embarrassing! I am single and don't want to have to explain this to any potential partners. Does anyone else have this issue? Any idea's on how to manage this?
I hope this post helps someone out there!
xx MJ
I wanted to firstly say - what a great site! It is so good to come here and read similar stories and know that I am not alone!
Secondly I wanted to post my story, mainly as a warning on:
1. Ignoring problems
2. Staying with a doctor you don't feel is right for you
I was having problems long before I was diagnosed. However, it crept up very slowly so I really just thought this was normal. Mainly it was issues with diarrhea.. I was also diagnosed with Depression and spent a two year period working on this - which is now managed well.
About 10 years ago I had an abscess on my butt! I was so embarrassed I didn't immediately go to the doctor and by the time I did it was the size of my fist and needed surgery. Unfortunately my doctor and the surgeon did not ask any questions to determine if the abscess could have been a result of anything more than an ingrown hair. I didn't ask any questions because I didn't know any better.
About 2 years later, I was on holiday with a friend. I paid all this money and spend the whole week at or near the hotel room as I was to scared to leave in case I needed to go the toilet. I had bad "nappy rash" from the diarrhea.
After ruining my friends holiday (as she stayed with me the whole time), I went straight to the doctor.
I was sent to a specialist and 48 hours later I found out I had alcerative colitis and crohns.
For the first 12 months every time I went to this specialist she would ask me if I was still smoking (unfortunately yes and I do know this is terrible for this disease). She didn't listen to anything I had to say after that. I had a tender spot on my buttock and eventually insisted that she do something after about 4-5 visits. I had an MRI and when I looked at the results I could see a white section where I was experiencing issues. My Specialist said everything was fine. I eventually managed to get an appointment while my butt was very tender and weeping. She finally realised something was wrong and sent me to a surgeon. I had a fistula. This had been there for nearly 12 months and had caused some damage to the inner muscles around my anal canal.
After the first surgery to fix this, it came back. I had to have a drainage tube inserted and when it was removed it came back again. During this time I was extremely tired - abnormally so. It got to the point where all my energy was focused on getting to work and then home. By the time I got home I couldn't be bothered going to the kitchen to get a glass of water.
My Specialist was not listening and my doctor kept saying you have Crohns and Depression - this is normal.
I eventually got sick of feeling so bad and went to a new GP. I asked her to pretend I didn't have either health issue and start from scratch. She found I had dangerously low B12 and Iron. She also suggested I try a new Specialist.
After and iron infusion and 6 B12 shots over a period of 6 weeks, I was starting to feel, what I would classify, as human.
My new Specialist changed my medication, it was 6MP (was previously on Pentasa). I had trouble getting on to the drug due to side effects. Mainly hayfever type symptoms, nausea and tiredness. After slowly increasing the drug to 50mg, I started to get a lessoning in the diarrhea.
However, I was still experiencing boughts of nausea and tiredness. Over a 12 month period it was getting progressively worse. My Specialist was very good and believed me and we tried various tests, etc. I had a breath test and found I have an intolerance to fructose. However a change in diet still did not make me feel better. Just reduced some of the sharp pains I sometimes get in the tummy before I go to the toilet. Eventually we decided to do another colonoscopy. The doc found that the crohns and colitis was, in effect, gone - the 6MP had done it's job. However I summised that the side effects of 6MP was the problem and he agreed I could 1/2 the dose. I also immediately began to feel better.
I suppose my point with the above saga, is to make sure you find a doctor and Specialist you feel comfortable with and believes you when you talk about your issues. Not listening to my gut could have permanently damaged my anal muscles causing permanent leakage. I also could have been very sick with the lack of iron and B12.
I still don't feel great but I must say I know I am very fortunate compared to many out there! I still experience tiredness and find it hard to engage with people because it is exhausting being social. I have minor bowel issues fluctuating between feeling slightly constipated to diarrhea for a couple of days at a time.
I find with the scar tissue around my butt I sometimes have residue and leakage from a bowel movement and I find this very embarrassing! I am single and don't want to have to explain this to any potential partners. Does anyone else have this issue? Any idea's on how to manage this?
I hope this post helps someone out there!
xx MJ
