Well everything went downhill again

[Swirl]

Just today I went from a good 90% feeling good to below 0% I went into remission from November till March when I started bleeding again. Then went to the bath more and more within the last few days. Now when I eat, or drink water when I take pills I have to use the bathroom.
I was just on Pentasa 2,000mg a day and probiotics since October.

I see GI late this month and I'm thinking of getting my colon removed. I don't want to be living on my own in another state where I don't have family and get into trouble coming out of remission and having to come back home.

This sucks so bad. This is one disease I feel is a curse. This is just awful to deal with. I think I need another blood transfusion too. I have breathing problems, sleeping all day again and very cold.

Now I will go and do research on life with a bag. I can't believe doctors still don't know much about this disease.
There's like no new information worth getting excited about.

 

[Deleted member 81255]

I know this disease sucks. Keep your chin up!

 

[ameslouise]

Hi Swirl - If I remember correctly, you have UC, right? If yes, then you should be eligible for a J-pouch, unless your rectum/anus are too damaged. Ask you doc.

What other meds have you tried? Where is your disease located? If it is far down, you might be able to get the flare under control with cortifoam or cortisone enemas. There are a lot of other options you can consider before you go for the surgery. But if you are eligible for the j-pouch, think of this as a treatment option, not a last resort. It can really change your life!

If you are not eligible for pouch and would need a bag, it's not the end of the world. I am soooooo happy that I have mine now and am already feeling so much better.

Good luck - let us know how you are doing - Amy

 

[Swirl]

I'm trying to keep positive.

I have left sided ulcerative colitis and its just involes inflamation and ulcers on my left side towards the end of my colon. The rest of my colon looked normal the report said. The enemas will give me side effects. I've tried one before last Summer. I break out do much in my face, its like all the pores in my face turn to pimples. And I have tons of legs pains and headaches. Predniside or whatever does the same. I would say any steriod drug is not a option for me. That's the only type of drug doctors have that might stop the bleeding. Once I come off of it, everything will start up again.

I'm looking into the J Pouch. I thought there was one process to it all. I thought J Pouch was the bag. And I took a look at a recent video on youtube called 'Nadia and Dennis 2 year J-pouchCookieupdate'. And one got pouchitis from it and the other went for a permanent ileostomy. That last one I don't know what that is...

This morning I wake up and had to go but it was nothing but blood. About the same amount a blood test takes out.
Moving my bed into the bathroom soon.
It feels nerve wrecking like having to throw up suddenly.

 

[xJillx]

Oh, Swirl, I am so sorry you aren't doing well. I hope your GI appointment is coming up soon this month, so you can talk about your options. Try to hang in there!

 

[ameslouise]

Hi Swirl -

Check out http://www.jpouch.org/ There's a video in the lower right corner that shows how the j pouch is formed from the small intestine.

The j pouch failure rate due to either chronic pouchitis or rediagnosis to Crohn's is about 5% at 5 years. I do remember reading somewhere that about 10% of jpouch patients are eventually rediagnosed to Crohn's disease. Those are pretty good odds in my book.

A permanent ileostomy is where your colon is totally removed and you have a permanent exterior bag from the end of your small intestine (ileum). That's what I just had done a month ago.

But I lived a GREAT life with my j pouch for 6 years. If I had to do it again, I would.

Have you consulted with a surgeon yet? If you are in NYC, you should go to Mt Sinai, which is a great hosp for IBD.

Good luck -Amy

 

[KaLa]

I'm trying to keep positive.

I have left sided ulcerative colitis and its just involes inflamation and ulcers on my left side towards the end of my colon. The rest of my colon looked normal the report said. The enemas will give me side effects. I've tried one before last Summer. I break out do much in my face, its like all the pores in my face turn to pimples. And I have tons of legs pains and headaches. Predniside or whatever does the same. I would say any steriod drug is not a option for me. That's the only type of drug doctors have that might stop the bleeding. Once I come off of it, everything will start up again.

This morning I wake up and had to go but it was nothing but blood. About the same amount a blood test takes out.
Moving my bed into the bathroom soon.
It feels nerve wrecking like having to throw up suddenly.

Hi Swirl. I have the same type of UC that you do. I've had it for about 20 yrs. (I'm 39 now). Did you ever try Rowasa (mesalamine) enemas? They don't have steroids in them, and can work wonders to stop bleeding and diarrhea. I am really sensitive to other medicines, but these are a lifesaver when I get a bad flare. I get the same symptoms that you do - blood filling the toilet, horrible cramps, weakness, chills, etc... Please don't give up! Good probiotics might also help. I take them every day. It is always such a shock and awful reality check when you're flaring. When you're in remission, it's easy to forget that you have a chronic condition. Try to think good thoughts.

 

[Jennjenn]

I hope everything works out for you swirl and that you can find some relief soon. I go to a doctor affiliated with new york presbysterian. 70th and York. I feel very confident and happywith the specialist I go to across from the hosptial on 71st and York.

If you go to Mount Sinai be careful of which specialist you go to. Go with some reccomendations from people. One of my professors suggested to try a Dr present there but I found this one I go to right before.

 

[lostpanda]

I'm trying to keep positive.

I have left sided ulcerative colitis and its just involes inflamation and ulcers on my left side towards the end of my colon. The rest of my colon looked normal the report said. The enemas will give me side effects. I've tried one before last Summer. I break out do much in my face, its like all the pores in my face turn to pimples. And I have tons of legs pains and headaches. Predniside or whatever does the same. I would say any steriod drug is not a option for me. That's the only type of drug doctors have that might stop the bleeding. Once I come off of it, everything will start up again.

I'm looking into the J Pouch. I thought there was one process to it all. I thought J Pouch was the bag. And I took a look at a recent video on youtube called 'Nadia and Dennis 2 year J-pouchCookieupdate'. And one got pouchitis from it and the other went for a permanent ileostomy. That last one I don't know what that is...

This morning I wake up and had to go but it was nothing but blood. About the same amount a blood test takes out.
Moving my bed into the bathroom soon.
It feels nerve wrecking like having to throw up suddenly.

Hi Swirl, I am a newbe to this forum, I have had CD sense 98, parcial colon removal in 04 and complete removal in 06 and left with an Ileostomy. Been in remission sense, very blessed and I know it. Most of the advice I have read concerning surgery seems to be very conservative and thats a good thing. I didn't have any options. My colon was so closed up from one end to the other that my GI doctor told me it was surgery or an emergebcy surgery fix a rupured colon. That got my attention. Do I wish I still have my colon? Yes but not with the pain and the blood and the meds that never worked well for me. I guess that one size don't fit all with this desease. Be comservative about surgery and get all the advice you can before making the decision. I guess I was luckey in that respect. Good luck moving forward and think remission Ok Bob E - Maine

 

[Swirl]

April 27th I see my GI. I haven't seen them since last Summer.

I haven't talk to a surgeon yet. I know I would be going to a different hospital for that. I'm in Nassau County, I haven't heard of Mt Sinai I don't think. I will look up that hospital, especially if they're known for IBD.
if I can live without these problems I would do it all now. I'm reading how ppl are doing really good with the J Pouch, and it does seem like a small percentage have problems. That's a good long time to be doing great, so now I know I won't feel awful the rest of my life with flairs.

Rowasa (mesalamine) enema I never heard of, I thought there was just steroid enemas. I will ask about getting that, that sounds good. Yeah it is a shock when a flair starts, its scary, its like having it for the first time and that not knowing feeling if its going to go away.
A flair up is like a depression. The only time I get depress now is when I have one.


I almost went to New York Presbysterian, they have everything for IBD but if I have a flair up I would hate to travel into the city to get there.
Trying to find the right doctor sometimes can be like trying to find the right medications.

 

[Swirl]

Hi Swirl, I am a newbe to this forum, I have had CD sense 98, parcial colon removal in 04 and complete removal in 06 and left with an Ileostomy. Been in remission sense, very blessed and I know it. Most of the advice I have read concerning surgery seems to be very conservative and thats a good thing. I didn't have any options. My colon was so closed up from one end to the other that my GI doctor told me it was surgery or an emergebcy surgery fix a rupured colon. That got my attention. Do I wish I still have my colon? Yes but not with the pain and the blood and the meds that never worked well for me. I guess that one size don't fit all with this desease. Be comservative about surgery and get all the advice you can before making the decision. I guess I was luckey in that respect. Good luck moving forward and think remission Ok Bob E - Maine

Thanks for that. Yeah I will need to do a lot more research. I know maybe most ppl get it when their colons has done a good amount of damage but for me it can be that or the fact that its doing so much damage to my personal life to where I can't even go to work because of it all. Or even go out with ppl, I would give away my colon to be able to start living life again.

I wish people didn't have to be put in such a life changing situation like this, this is crazy. The other thing that sucks is having to read through it all and thinking so much about it. Sometimes this feels like its too much to deal with..
Its not as bad as having a messed up liver which my older brother had.