I don't know where to start. I was diagnosed with UC Oct 2003 and haven't felt well since then. To try to keep my UC from flaring too badly I was on such high doses of prednisone that I was so moody all the time. Not great when you are dealing with a new baby (born Aug 2003).

After two years of dealing with bad and really bad flares, trips to the ER and having to be admitted to the hospital for a month to get things under control again. I decided that I had no choice but to have an ileostomy Oct 2005. That surgery was horrible. I ended up having three surgeries in 8 days due to infection, twisted bowels, and abcesses. After spending a month in the hospital I was sent home only to go back a week later because of a kidney infection, they had to give me a temp nephrostomy tube to drain that kidney. So not only did I have to adjust to having TWO bags attached to my abdomin (ostomy and mucus fistula), I had to have a drainage bag for my pee straped to my leg for a couple of months...

After many more stays at the hosptial (had a pretty steady pattern established - one week at home, one week in the hospital) I was finally home for good Dec 18 2005 with a PIC line so I could have IV antibotics at home.

It took me a few months to recover from that episode and final started to feel better come spring. then I got a call from the surgeon that he had an opening May 19th 2006 to do my take down. I was thrilled to be rid of the bags!!!

After my takedown I was in horrible pain from fissures. That lasted for at least a month before they finally settled down. As I started to get use to the j-pouch, I started having horrible gas so I was (and still am) going to the bathroom more to get rid of the gas than to actually empty my pouch. Then in Dec of 2006 I again started having bad rectal pain. Went to see my Doctors and now they are doing tests to 'rule out' crohn's. I know for a fact that I have fissures again, every time I go to the bathroom I feel like I want to vomit as the pain is so bad.

Some days for me are better than others. Yesterday I felt so horrible I just wanted to cry all day so when I got home last night I just sat and cried. I try not to do that too much in front of the kids so they don't worry about me but I just couldn't help it last night.

I have been on pain killers for the past month and some days they don't even do much except make me drowsy and useless. I fell asleep on my desk here at work yesterday. Put my head right down and was out like a light. Good thing the big boss man didn't come round at at that point :-)

I go for a scope next Thursday, hopefully the Dr will see what he needs to so that I can get some meds to make me feel better. I know it's going to hurt like *&^$^* so the Dr said he would sedate me and try to freeze the area and do what he can to make me as comfortable as possible for the test.

Did a barium swallow test last Tuesday and then they took x-rays of my small bowel. Haven't heard back from anyone regarding that so I assume there was nothing that concerned them.

I just get so tired of being tired, sick and just not feeling well.

I thought that once I had my colon removed and I started to heal things would be better but they just seem to be dragging on...

I am sorry for the long post, I just needed to vent to people who would understand what I am going through.

My husband has been great through all this but even he doesn't know what to say anymore. All I get is looks of pitty when I feel like this and sometimes that makes me extremely angry.

Thanks for 'listening'

Hi Christine,

Your story sounds a lot like mine and my heart really goes out to you! Like you I've had multiple complications along with multiple operations and also like you I am going through tests at the moment to find out if I have Crohns.

Fissures have to be one of the most painful inflictions there are. Have you tried nitroglycerine ointment? It was the only thing that would heal my fissures, that along with Xylocaine cream.

I really don't know what else to advise that can make you feel better but just wanted you to know that you are not alone and I really do understand how you are feeling.

Come here and vent as much as you need to, it really does help and we are all here to lend an ear, give advice (when we have it to give) and to offer support and friendship.

I hope things start to turn around for you soon.

Take care

Shell

Christine, I am so sorry this is happening. I agree with Shell, some of our members have had great success with the nitroglycerine cream. Good Luck on thursday and I hope he finds something that can be fixed so you can finally move on.

Let us know how it goes.

janna

Christine

I don't have much to say to help you feel better, I just wanted to let you know that I was thinking about you. I am so sorry you are going through all this. Please try to hang in there, hopefully they will find something that will help you so you can get on with your life. Please feel free to vent any time. Even if we don't have the same complications, we all can understand. Best wishes to you.

thank you all for your thoughts and comments.

I will definetly ask about the nitroglycerine cream when I see my doctor next week.

I have also been feeling very sick to my stomach lately whenever I eat anything. I hope what ever is going on isn't anything major. I mean, at this point I don't think it would matter to me what is wrong, I just need someone to be able to fix it.

Thanks again for all the support everyone offers here!!

Hi Christine...

My TD was Dec 10th, 2006. I'm still not there either. I get bad stomach aches after I eat. My pouch area of my abdomin just seem to hurt all the time. The only time I feel good is after a whole vicodin. I can only do that after I get home from work. I'm wiped out all the time. I can't tell you how many days I have come home and gone directly to bed, I just don't feel good. I see the surgeon this Friday for a scope, so I hope I'll get some good news, that it is something they can fix! Did I mention I can't have sex anymore because its too painful. I never thought I would want for the days when I didn't have sex because I wasn't interested.

You have been through the mill...hope you get some answers too!

Christine

I wish I had answers for you. I hope your appointment goes well and they are able to get you feeling better. Just know there are lots of us thinking of you and wishing you well. Vent here whenever you feel the need. Good luck with the appointment...let us know how things go.

Hi Christine..

Just wanted to say hang in there...many of us have been thru what you are going thru, and at times it seems as though it will never stop, but I assure you, it will. I can't say when, but trust me, there will be a time when this will all be but a distant memory, it's just a real pain in the you know what to go though!!!! Good luck at your doctors and let us know what the outcome is....sending healing vibes your way...

Eric

Hi Christine,

I'm sorry to hear how things have been going for you. It's not fair, and you deserve better.

What have you tried for the gas? Gas either comes from swallowing air when you eat or drink, or bacteria in the pouch. For the latter, maybe diet could help? When I tried the specific carbohydrate diet, the gas production in my diseased colon went way down, because the bacteria had less to feed on. Have they tested you for Celiac disease?

Best of luck,
Kevin

I know the feeling of being sick & tired. Some people whiz right through...and others...us take more time(bummer). Just know that there are more out there like you, cry when you need to cry (I know I would go to my room and cry so the kids didn't see me), but crying can make you feel better. I have no great words of wisdom...I'm new here. But, the people here are great. Keep on going...Peace to you and your family--Sue

thanks again for all the positive feedback and thoughts and encouragement. It means a lot!

Kevin,
No, I haven't been tested for Celiac Disease, never even crossed my mind. Maybe I should mention it to the doctor when I see him next week.

I have tried omitting lots of foods from my diet but the carbs seem to be the best thing for my pouch so I didn't try omitting them.

I have tried digestive enzimes, probiotics etc for the gas but nothing really seems to help. Seems things have gotten worse in the past few weeks. I am thinking maybe I have a mild case of pouchitis as things have been looser and more frequent of late as well.

Well, another week and I finally see my doctor. I just hate waiting.

Christine, hang in there. Don't forget that being a mother, wife, looking after a home and doing paid work can make a healthy woman feel tired and worn out and you are doing all this as well as coping with a major illness.Look into the possiblilty of pouchitis, I spent 18 months going back and forth to my doctor wtih pain, bleeding fissures and foul gas, I tried 25!! mgs of prednisilone , colifoam, you name it,I was so sick and at my wits end until I found this site and read the posts from others with the same symtoms. I was amazed, I could have written them myself, they were describing my symptoms to T.Armed with this information I went back to my doctor and I,m free of my chronic pouchitis thanks to daily probiotics ,less stress and a few dietry changes.
Have you tried to thicken your stool with something like Metamucil? I found this a great help with fissures, thicker stool is easier to pass and clean up after, and less BMs gives the rectum a break, more time to heal and for topical ointments to work.
wishing you well, Amanda

Christine, hang in there. Don't forget that being a mother, wife, looking after a home and doing paid work can make a healthy woman feel tired and worn out and you are doing all this as well as coping with a major illness.Look into the possiblilty of pouchitis, I spent 1

UPDATE:

Well, I have been to see my GI and he did a scope (gave me wonderful sedation ), he said there was some inflamation around the staples in the pouch and had the surgeon who performed the j-pouch surgery there so he saw everything as well. They took a whole bunch of biopsies but said that they wouldn't have the results till the end of March

I still am having extreme pain when I go to the bathroom, I have horrible gas pains, I feel like I am in the bathroom all the time (barely made it home from work yesterday...). He did give me some different pain meds that don't make me as sick as the others did so at least I can function most days.

Yesterday was my b-day and I didn't make it through dinner before I was running again and just was so tired and feeling horrible I ended up in bed all night. didn't even want the cake my boys made for me, I don't give up cake for anything

I go for a pouchogram on Mar 28 and then I see my GI again on April 3 so hopefully I will have some answers soon. If things don't get better soon or they don't know what is going on I think I am going to want to scrap the pouch. Last night I felt like I did when I had UC, crampy, going all the time, pain, spasms...

Someone tell me there is a light out there somewhere and this will all get better. I don't know how much more I can take

Hi all,

Just wanted to update on you on what is going on.

I went for a pouchogram on Wednesday, the last of my scheduled tests for now. All went well, except no one told me not to eat anything that morning. I had a few pieces of toast but the doctor said that shouldn't interfer with the test so the did it anyway. I just made sure that I emptied out as much as I could right before the test.

When they called me in and explained what they were going to do (insert the tube and fill the pouch with the barium) I asked if they had any topical numbing cream because my bottom is extremely sore . They said no, must have mentioned it to the doctor before he came to see me and he got the smallest tube he could find !!

the tube must have been very small because I didn't feel it go in! Well, the test went fine and now I am just waiting for Tuesday when I have my appointment with the GI.

My pain has eased off a bit, except for the middle of night trips to the bathroom. For some reason the pain shoots through the roof in the wee hours of the morning . The only thing that eases the pain is a sitz bath and a heating pad so while I soak in the bath, my hubby gets the heating pad hot so it's ready and waiting for me when I get back into bed.

I just hope and pray that the doctor has all the test results back when I see him next week and that he'll have some news for me as to why I am having such pain. I just want to be able to do something to fix this up so I can go on with life.

thanks for 'listening'