My Crohns

:ybatty:

Hi all! I am new here (obviously, right?) and I thought I would share a little bit of my story.

I wasn't diagnosed with Crohns until August of 2006, but I have had symptoms of this disease for many many many years. It started at work one day. I developed a pain in my right lower quadrant that would not go away. I tried to ignore it and that didn't work. I tried to relieve it by taking anti-gas pills and that didn't work. So I finally went to see a doctor. The first thing that was done was a CT Scan that showed inflammation in my ileo-cecal area (like I knew what that was all about) and we needed to do more tests. I was transported to a local are ER where they did more tests and gave no answers. It was truly inspirational I tell you :lol: !

Fast forward to a couple of months later after seeing both a surgeon and my gastro doc, it was decided that my thickening of the colon wall was too far progressed and it would have to be removed. So, I had a right hemi-cholectomy on 19 Sep 2006 ! I don't want to sound like too much of a baby, but what a HORRIBLY AWFUL surgery this was. I didn't want to wake up. I was in so much more pain than when I went in originally. I did get over it though. I have young ones at home and an awesome husband that I couldn't give up on!

I had hoped that the surgery would have put me into remission, but I still have symptoms every day and I have taken more than a few meds to combat this already. The next step is IMURAN! I am trying to sound excited.

I guess I just wanted to reach out to those of you who have experienced the same, or more likely, worse. I have it pretty mild I am told. I am dealing with it ok right now. I am pretty open about it which helps. I even have a bumper magnet on my SUV that reads "I am only speeding because I really have to POOP" isn't that the truth? Well, I look forward to reading all about others who have gone through this disease as well and hope to gain insight and wisdom from how you handled your struggles and how you all learned to cope. Take care!!

:ycool:

Welcome

Hi and welcome to the forum!!
I know you will find this forum and the members here helpful.
Feel free to ask questions and roam the halls. :lol:
I love your postive and upbeat attitude!!!

Hope to read more from you...
Again, welcome!
Hugs~Nancy

Hi, I'm also pretty new to this forum. Hopefully you'll find some useful information in here.

If I might add, I'm surprised that you're told you have it 'pretty mild' considering surgery was required, and that even after that, you still did not go into remission.

Either way, nice to see you in here

Hi,
welcome i am new here also.The people here are so nice and supportive .As far as Imuran is concerned i have been on it for years.Its got loads of possible side affects you have to have blood tests every month for six months then every three months.It does seem to work though and ment i could lower my predisolone by a large amount which must be a good thing.I have been diagnosed as chronic and have still managed to avoid surgery.Best wishes rattle

Thank you!!!! It is nice to read your responses! I can say that my supportive family is sooooooo sick of me rattling on and on about my disease. I am sure it's a bit denial mixed with a bit more ignorance to its effects since on the outside I look just fine.

I dabbled a bit with being angry------REALLY angry. I am a military member and I have to have a civilian GI because this disease is something that could get me booted out. Long story. I guess I just won't complain about it much up the military chain. Anyhoo, about being angry, I decided to just stop being angry. I am early into this decision, but I seem to be accomplishing it. Others around me think I am pretty crazy being happy all the time. It's worth it.

I am hoping to have no side effects with Imuran. I have been lucky that I only had to endure 9 days of prednisone. That was yucky and I could live without having to ever take it again. My sympathy goes out to those of you who are required to be on it for symptom relief . I am not as strong as you! I have been on Entocort without any problem - that's if you don't count that it can't be taken long-term.
I have even been able to gain weight while taking it. I have my appetite back. I have always been small, but before my surgery I had to force nutritional shakes upon myself. I had NO desire to eat. It started to become a problem when I could see ribs, hipbones, collar bone..etc. I am happy to report that I now have a bit of a belly even!

My plan for the future (near future) is to get back to the gym. I am hopeful that I can feel a bit healthier once I get back in shape. Only time will tell if I can fend off the fatigue. I know that I am still considered malnourished since what goes in sometimes still comes right back out, but not to worry. I am young and I am determined to make it work somehow. How's that for a positive outlook? Haha.

Very good story, Chroniac.

I myself have been a gym-freak for about 7 years, but my recent inflammation/flare-up has removed me from the gym for at least two months, now. I'm actually not as depressed about it as I thought I would have been. I've always associated a lot of my 'image' with my gym-going. I was very concerned about my gym progress, how I looked in and out of my clothes, my nutrition, avoiding drugs and alcohol, etc...

But not being able to work out and having no appetite and the CHRONIC pain and need to go to the bathroom quickly removed my ability to go to the gym and follow the out-of-gym activities (food preparation and eating, mainly) necessary to making progress in the gym, both performance-wise and aesthetic-wise. I took a look in the mirror today and couldn't believe how thin I looked. My shoulders have really slimmed in terms of their width and my body, without clothes, looks much smaller and softer. Ah well. Needless to say, it's on my mind, but I must reiterate that it's not upsetting me nearly as much as I thought it would when I initially realized that my previous lifestyle was no longer and option considering the severity of my current flare-up.

I too have recently become very angry. Every time I sit on the goddamn toilet I am pissed off at what's happened to me and how I literally am INCAPABLE of doing so many things I *SHOULD* be doing: school, work, going out, every normal thing most healthy and socially active young adults do. I will not leave my house because I just know a cramp will come and I will have a very short time to make it to a bathroom without having an accident.

I'll stop rambling, now... but it's great to hear that you've decided to let go of the anger (what's anger good for, anyways? it's only good for motivation for a main character in a movie about revenge!). Anger only destroys your insides and your mind and prevents you from being able to accomplish good things. It's nice to have you here!

Hi Chroniac and welcome to the forum. I have had similar surgery to you except I also had a foot of small bowel removed and a temporary illeostomy and I know exactly what you mean when you talk of pain. I too didn't want to scare anyone, but.. . . . .I thought I was gonna die. . . .honestly. I have had a couple of other surgeries in my lifetime, 2 caesareans being just a couple, and I am by no means a baby when it comes to pain, but, the pain from that surgery was terrible. I have honestly never felt pain like it. I am now awaiting reversal surgery to get rid of the stoma and I am not looking forward to it to be honest. At the mo, I have no pain and that aspect of the reversal is really not appealing.

You mention you are going to try Imuran. I have been on Imuran on and off for about 5 years or so and I actually hate it. . . . .sorry to be so blunt but I seem to pick up every little infection going when on this. It was initially prescribed to me to try and help with my fistulae, it actually did no good whatsoever. The dosage was too low for me then though, so now I have had to increase the dosage and I feel drained and as I say I pick up infections easily. Apparently, tiredness is a side effect amongst several others. For all my dislikes of Imuran though, I would still rather have it than Prednisolone. Hope you have better luck then I did.


Ruth

Welcome.

I appreciate all the information Ruth! I really don't look forward to taking the Imuran, but only time will tell. I hope that if I think positively enough I will prevail!

I felt so bad after my surgery and no one seemed to understand. My mom, who is my savior, had just underwent a tummy tuck (her belly fat was used for reconstructing her breasts after a double radical mastectomy) three days prior to me going under and she had been cut from one side to the other without one complaint. I, however, had laporascopic surgery to remove some small and some large and I can say that it was nothing short of excruciating. Once I got demerol (morphine drip didn't help) it was a bit better, but even now some pain still lingers there. I did have a ct scan done after the surgery to see if there were adhesions and that was negative.

I shall stop whining here. I thank you for all the info you all have provided so far. I just know that I am going to enjoy this forum!

Welcome to the forum Chroniac!

I am glad you think you will be enjoying this forum as much as I have. We have been online now for about a year, and it is still so interesting to see how all of the IBD sufferers of the world are so different and have different experiences with the disease.

I am sorry that your symptoms continue to pursue though. I think it is great you are trying to get rid of your anger, as I believe stress reduction is very important with this disease. While being angry may seem like a great way to lose some steam, it really is just seems to be a release that allows the anger and stress to continue to come back and build over and over again.

Imuran can be a very effective drug, but it usually takes anywhere from 4-8 weeks to start to work. So do not get frustrated if after you take it not much happens.

Good luck, keep us updated and feel free to ask us ANYTHING!

This is such a great place to visit and get info and hugs from so many helpful and loving people. It's great that there are people out here who love others and want to help. Good Luck to everyone.
Tom