My story

[Girun]

I have been diagnosed with IBD since 1995. They initially said that I had UC b/c it was only sigmoid that seemed to be involved. Had a major flare I guess about 10 years a go now doctor was putting me on prednisone very time I would wean off would start bleeding again. I switched doctors he tried me on a different combo of drugs to no success, ended up in hospital entire transverse colon was almost occluded due to so much inflammation. At that point b/c of skip areas in colon I was fx. With crohns. Doctor started me on remocaide an pow, started feeling human again. Have had some flares since then but mild in comparrison with that. As all of you I am sure I have rounds of feeling sorry for myself. Decided to join thisnforum after on walk fro. Parking lot into work did not make it to toilet in time. Feeling very sorry for myself, needed to have some fellow sufferers for support:voodoo: And that is my story as I view it

 

[scottsma]

i,and welcome from a recent newbie.this is a great forum and everyone is very friendly and helpful so you'll get lots of support and advice.I've been dx with colitis for 6yrs and have had many close calls but no accidents YET.But never say never. It's constantly on my mind and has changed my life,but there are some ok days too.so chin up hope you are feeling ok soon.

 

[Angrybird]

Hello and :welcome: to the forum. Glad the remicade is sorting you out for the most part although I am curious....when you say flares do these last weeks or only a few days? Do you have to go on any other meds (ie steroids) when they occur? Do you feel that you are in remission (especially given your recent accident)? I hate it when that happens, luckily I have only had a fews accidents...although the one I had in front of hubby for the first time was mortifying and it took a few days for me to believe he could find anything about me attractive. I am pleased you have decided to join us though, I have found people here very caring and helpful and I have learnt so much. I hope you find it as great as I do.

 

[Girun]

I think that I have been having a flare for about a month now. It is not as bad as I had before remocaide was started an I think this is due to the remicaide. I have had a few flares over last year or so. Think some of this is due to my diet choices. When I stick to it I seem to do better. I feel that for that period of time I have not been truly in re idiom but no where as sick as I would be without remicaide. I am thankful for as well as I have been. Just get down on life when things seem bad. Slip into feeling sorry for myself sometimes.

 

[Angrybird]

Completely understand what you mean hun. It was about 10 weeks after my op that I sat there on the loo feeling horrendous and very thankful that the sink was next to me - 'stuff' was coming out both ends at the same time. That was quite a low point for me as being sick is not usually park of my crohns symptoms, this led to me joining the forum. Have you felt bad enough to see your doc about this current flare or do you think it is diet related?

 

[Girun]

I am lucky that I work with my doctor the only problem is you feel embarrassed to go to them more than u would if I didn't know him except for clinically. I need to get over that he told me this time that I need to find him wherever he is if I am having issues not to let it go so long. It really is just me hate to be a complainer, I let things go too long sometimes b/c I don't want them to think of me as that crazy whiny complainer. It is stupid I know but working with him I want him to think highly of me. When really who cares being miserable is not fun. I had him call in rowasa enemas an he gave me some conassa suppositories b/c I feel like it is all lower bowel disease right now. I am having pain but it is mostly lower an seems like by color of blood it is low as well. Will try that an see then next step prednisone if this doesn't work. I feel that stress an diet has played a big part. I have had more beer than I normally have an symptoms have followed the increase. Used to only have alcohol once a month or even once every two months now have been having more frequent as well as more junky food that I wasn't eating. Going to try an adjust all that an get on track I feel much better when I am following my diet to the letter.

 

[Girun]

So are you currently in remission? From your med list looks like you are on prednisone routinely is that still so? I was taking azothiaprine but with remicaide it increases your risk for lymphoma, so my old doctor took me off. Just curious, I absolutely hate prednisone will take during a flare but usually try every other avenue first. Thank you for your support it helps.

 

[Angrybird]

No worries hun I am not in remission yet but am doing all I can to get there. I have been on and off the Pred over the years (cannot have Budesonide) and can struggle to get off it, the last time I was on it for over 18months and gained soooo much weight I therefore can be really stubborn about giving in and taking it (leading up to my op I went on Modulen shakes over taking it I was that determined). I only gave in this time because it was 3 days before xmas and I wanted to be able to eat without throwing up. I was also on the Aza about 7 years ago but had a problem with it (neutropenia), I am happy to give it another go though as the alternative is Humira and the doc said there 'shouldn't' be an issue this time.............I am seeing my IBD nurse on Monday and am hoping that I can drop down to 20mg, keeping fingers crossed!

 

[Girun]

I hope you feel 100% soon

I am sorry you are on an even rougher road. Have you ever been on remicaide or hi Ira before. I know that was what got me to where I am now. I worry about what it is doing to my body long term but, I feel 100% better than before I went on it even with small flare ups. I just have a putty party for myself sometimes an that makes worse:rof: I cannot imagine with being on prednisone that long. It wigs me out. I am still carrying extra weight after this summers flare up an being on prednisone for a while. I hope that they can get you on humira w/o any side effects an you do well:ycool: please let me know how it goes. Good luck! You seem to be a strong person that helps. Keep me posted please. Thanks for your support:ylol2:

 

[Angrybird]

Not ready for the Humira yet, I am hoping to keep this is my arsenal for later on if it's needed..... I have been on Remicade (aka Infliximab), did alright on it for a while and then had a fairly big reaction to it. I ended up in hospital with severe joint pain practically everywhere and these marks around my eyes, hands and elbows and my bloods were giving positive markers towards Lupus. Took a while for things to settle down after it was stopped but now I only get the occasional joint pain that can easily be crohn related. Will of course keep you updated on how things go tomorrow

 

[gigirl]

I decided to joint this forum today after being really frustrated!!! I have been having a bad flare up for over 2 weeks. I think I have had crohn's for many years, but was just diagnosed in 2008. I have only been taking prilosec and just treating the flare ups. Right now I'm taking entocort, flagyl and hyoscamine. I have just been on liquids, eggs, a small amount of chicken and baked potatoes. My crohn's is mostly constipation, gas, bloating and lately, pain! I am really frustrated about what to eat, take, etc. I am blessed that I have not had to have any surgeries yet and rarely have diarrhea, but the pain and discomfort is very frustrating. My husband is frustrated, too. I hesitate to take many vitamins, supplements because often they make it worse. I'm considering getting a second opinion. My dr. wants to start Pentasa after I finish the steroids. Thanks for letting me vent

 

[Angrybird]

Hi there :bigwave: Have a look at our treatment forum as there will be info about the Pentesa there for you to have a look at. It is one of the milder drugs to be used for crohns treatment and is used to keep inflammation at bay. You may also find having a look at our diet and supps forum for ideas on what to try. It is tricky as we all react differently to different foods but it can't hurt to have a look. Have you had any recent tests to indicate the requirement for the Pentesa or is it based on your current symptoms? What has made you think about a 2nd opinion? Also when you can don't forget to post your own thread on the 'my story' forum, it means more people aill be able to see you are now here with us and give you a good 'ol crohnie welcome

 

[Girun]

I used to have a lot of those symptoms do better with low gas causing food an exercise. That helps me. When I run it jogs out gas seems to anyway an I eat oatmeal for breakfast as well as good fiber unless having diarrhea. Def. Look at the dietan supplement section. Good luck hope u feel better soon

 

[gigirl]

thanks for the input, it is hard to exercise when you feel such fatigue. i know it helps though. the Pentesa will just be to try and keep the inflammation down. I also work in a GI lab with my doctor. And it does become awkward, you second guess each other,etc. and I think I might like a fresh perspective. Thank you girls for the info. It's nice to talk to people who understand.

 

[Girun]

I know what you mean about fatigue but once I push myself an do it I do feel better not always able to do though. Beat myself up when I can't thinking it just me mentally sabatoging myself to not exercise good to know you feel the same maybe is disease an just need to give myself a break w/o feeling guilty so glad imon here now like you said good to hear from other people who can relate