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Crohns destroying my happy go luck person

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Crohn's Disease
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Posted 6/11/2012 8:27 AM (GMT 0)
Hi just read a little about people suffering with crohns and seem there are a lot of us out there with simalr probs .
Mine is really causing me grief had lost lots of weight befor the doctors thought there might be some think wrong have had a few operations seton drain put in and nothing but grief every 2 weeks I get infection and bleed and puss just comes out but latlely just keeps filling up until is so hard can't sit or stand baths seem to cool me down abit but what is the solution for this or is this it for life am on steroids and methotrexate cause me anxiety as seems I can't function body tends to ach and my eyes has worsens over time the say maybe meds ...pain is the biggest problem take pain relic but still can't be to strong as I have to young children to care for okay enough now just need to chat to someone thanks sad confused cry
Posted 6/11/2012 2:50 PM (GMT 0)
Hi,

I don't know much about seton drains and fistulas (hopefully someone else will respond soon), but I just want you to know I can relate to the rest, the pain, fatigue, tending to young children while sick. It's very hard.

Sometimes it takes a while for things to get better, but they almost always do. Having Crohn's means there will be harder times and some better times, even though "better times" are different for all of us. I'm pretty sure fistulas take a while to heal, but hang in there, try to be strong and keep going for your kids especially.

Have they tried metronidazole (flagyl) for the fistula yet? Are you having other CD symptoms?
Posted 6/11/2012 3:08 PM (GMT 0)
Hi Marzipan, I guess I can't be of too much help because right now I'm in a similar place but haven't found an answer yet either. My fistula developed about 2 months ago and has gone through a similar course of draining and filling. Is the pain you experience at the site of the fistula? My doc gave me topical numbing cream to deal with the pain associated with it. Maybe that would help? My doctor also suggested biologics to help heal it because they are apparently the best at resolving fistulas. I'm not so happy about dealing with the side effects of those though. Have you considered them? Good Luck, Its a tough road and can leave you feeling defeated but it will get better.
Posted 6/12/2012 2:39 AM (GMT 0)
Thankyou for your response it's nice to chat to people in the same situation hope for a quick recovery been like this for the last 8 months ... Just very tiring day in day out ...lets hope we get resolution soon :)
Posted 6/12/2012 3:42 AM (GMT 0)
That's the one thing about this disease it all takes time to find what works and what doesn't work .. sometimes you have to be on certain medications for months before they know if it is working ... Hang in there ... try to stay positive and when all else fails try to laugh -- I know it is sometimes hard but a good laugh can be some good medicine ..
Posted 6/13/2012 6:28 PM (GMT 0)
Read dr David Kleins book and website:
http://www.colitis-crohns.com/about.html

It allowed me to get of my crohns meds and other meds for my other health conditions I was on about ten different meds and now I'm down to two that are 1/2 of the dose I was on before and they are not even related to my crohns!

Also I've had two different doctors tell me that over 80% of people with intestinal disorders also have mental illnesses I was not diagnosed with crohns until I was 20 but it was evident at birth, I was diagnosed with bipolar disorder at age ten but when my doctors ( I see 5 different doctors ) found out I have crohns they told me it made since, because of my mental issues. Once I went on the diet above it became more evident that I didn't have bipolar but hypoglycemia and with a very strict diet I have been able to control it well. All my doctors have been shocked at my vast health improvements since being on the diet above, so much so that they've taken down his info to try themselves and tell there patients to help them. I do also have over seven other health problem and they were also helped. My only problem is my many food and chemical allergies, which makes finding food that sticks to that diet and allergy free without being food or nutrient deprived.
Posted 6/14/2012 8:39 PM (GMT 0)
Hi Marzipan40-

I definitely understand how you feel. When I was first diagnosed I was ready to take on the disease, but then as I came to find out over several months/ year later none of the meds were working for me. I was up and down a lot and really struggled with being sick, wearing diapers and couldn't leave the house b/c of the many accidents I was having. I have had ileostomy surgery and was very excited to get my life back, but now I'm struggling with the ostomy bag. So...I'm back to being up and down. Now my ups are lot more like me though b/c I am feeling better and I'm hoping to get over my issues with the bag and accept it. I hate saying it since it sounds so cliche, but it does get better even when it feels like it's not going to.

Good luck and I hope you find something that will put you in remission for years to come!
Posted 6/18/2012 7:38 PM (GMT 0)
Thankyou so much for all your post we all seem to be suffering in our own ways terrible ..I have been having very sever night sweats is that a bad thing Chainging several times a night ..had it before for several months and I just thought I was having hormonal issues but now again is that some think to do with crohns as have have an infection in seton drain again this week ....thanks
Posted 6/19/2012 12:52 AM (GMT 0)
I would definitely find out about the night sweats. I get those when I am at my worst and they feel like they suck the life out me. I think its from severe inflammation and fevers fluctuating but it might be the infection.
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