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Crohns and Colitis Exchange

This is a place for members with Crohn's Disease or Ulcerative Colitis to get ... more

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LauraLW

Joined: 01/02/2012

My Story:

Diagnosed with crohn's at age of 23 after losing 75lbs in three months. At the time, I had disease in my stomach and small intestine only. I achieved remission with Remicade and then lost insurance coverage, so was not on any medication for a few years. Maintained a tolerable level of health until I began suffering flares that couldn't be controlled with prednisone. I began taking Humira once a week and while that did help considerably, I still had significant disease and I began developing abcesses/fistulas. I had a resection of my terminal ileum and proximal colon. The decrease in symptoms allowed the abcessing to cease for awhile, though an extablished fistula tract to the skin remained. I achieved enough of a remission at age 29 for my GI dr to say it may be safe for me to attempt pregnancy. My husband and I were blessed with a healthy, beautiful baby girl born Dec 2010 by planned c-section. While pregnant, I did not take Humira, as I was concernd about possible side effects for my daughter (against my dr's advice). I had another bout of abcess/fistula after she was born. Impossible to know if I would have been sick if I stayed on my meds while pregnant or not...but I have never regretted my decision to be med-free during pregnancy. Three months after she was born, I had a colostomy and though the adjustment period was a little rough, I know it was the right decision for me. I know that crohns will always be a part of my life and who I am. I know that I will most likely not be able to maintain remission forever as my GI doctor has told me that I have "refractory/malignant" crohns, but I'm committed to doing everything I can to be well and keep hoping that new treatments are coming out. I do believe that I am a better person because I have been touched by disease. I believe that I have actually been given a gift that allows me to be more forgiving of others, to be of better service to others, to let the unimportant things in life slide and just embrace the life that I have. Sappy....yuk....just hope all those out there with crohns/ulcerative colitis and all who are sick can find health and well-being.

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Reply: I'm new to the group

Hello Mrs, welcome to the group and hope you are doing well! There are a lot of great...

Posted by LauraLW

2 Replies | Reply | Watch This DiscussionReport This| Share this:I'm new to the group Hello Mrs, welcome to the group and hope you are doing well! There are a lot of great...

Reply: Crohns and Salmonella Poisoning

Hi Heather, I'm sorry you're feeling so sick and frustrated right now. Not only are you...

Posted by LauraLW

Hi Heather, I'm sorry you're feeling so sick and frustrated right now. Not only are you having a flare, you're also struggling with salmonella, which totally sucks.

While I have not been in your exact situation, I too have crohns and recently had giardia, which is an intestinal parasite (the one you get when you drink the water in Mexico, though I hadn't done any travelling!). The giardia went undiagnosed for at least 6mos and was very sick during that time. Due to recent bowel surgery, my GI thought that I was having extreme nausea due to obstructions. I am very happy with my GI and have a ton of confidence in him, but I had this nagging feeling that the diagnosis didn't exactly fit. We found out later--giardia. Should've listened to that voice in the back of my head.

But I guess, what I'm saying with that is that 1) you don't have confidence in your GI, 2) he/she is not familiar with your situation, but as far as you know, has not consulted other GI specialists 3) your needs are not being met and there's a lack of communication. Remember that you do have the right for a second opinion and a fresh pair of eyes to look at you and what's going on. In my case, giardia was easy to treat and I had a lot of relief at first, then got really sick again. I thought maybe the giardia wasn't all gone. It was gone, but was having a flare and my meds had become ineffective. Change meds and feeling better. Maybe your GI could look at treating your crohns as well as the salmonella.

The antibiotics situation is confusing. It can be common practice to put someone on a generalized antibiotic before the sensitivity testing is done. But as you've had the sensitivity test, and the antibiotic has been ineffective, that's where they lose me..... Is there a test they can do to make sure that the salmonella is gone? Maybe you're like me and the bug is gone, but you're sick bc of flare up?

I'm glad you reached out, and I hope that just talking about it has helped a little. You're not alone, and the struggle with depression is a very real thing and something that probably all of us w crohns has gone through or is going through. I've had many complications w crohns but had never suffered depression til last year. I got on some meds and it has really helped. I'm not on it anymore, but I think I'd still be struggling if I hadn't sought help. If you need help, I'd encourage you to seek it out. You will make it through this one, even though it might be the longest and most difficult time you've had, you will get the help you need. You will feel better.View Thread

Posted byLauraLW

4 Replies | Reply | Watch This DiscussionReport This| Share this:Crohns and Salmonella Poisoning Hi Heather, I'm sorry you're feeling so sick and frustrated right now. Not only are you...

Reply: Welcome Roll Call

Hi Brandi, you're likely feeling pretty sick right now -- to go in to the doctor and have...

Posted by LauraLW

46 Replies | Reply | Watch This DiscussionReport This| Share this:Welcome Roll Call Hi Brandi, you're likely feeling pretty sick right now -- to go in to the doctor and have...

Reply: Please Help!

Hi raikage, sorry you're not feeling well. Your symptoms do seem suspicious for a digestive...

Posted by LauraLW

2 Replies | Reply | Watch This DiscussionReport This| Share this:Please Help! Hi raikage, sorry you're not feeling well. Your symptoms do seem suspicious for a digestive...

Reply: considering resectioning surgery

HannaLeigh, I hope you do keep up with nursing school...I can tell you're going to be a ...

Posted by LauraLW

23 Replies | Reply | Watch This DiscussionReport This| Share this:considering resectioning surgery HannaLeigh, I hope you do keep up with nursing school...I can tell you're going to be a ...

Reply: Not headed for surgery

Hi. I hope you get to feeling better soon. I'm glad that your dr is ordering some good...

Posted by LauraLW

9 Replies | Reply | Watch This DiscussionReport This| Share this:Not headed for surgery Hi. I hope you get to feeling better soon. I'm glad that your dr is ordering some good...

Reply: joint pain with colitis?

Hi Miss Emma, I'm sorry you're not feeling well. I have crohn's and have experienced...

Posted by LauraLW

9 Replies | Reply | Watch This DiscussionReport This| Share this:joint pain with colitis? Hi Miss Emma, I'm sorry you're not feeling well. I have crohn's and have experienced...

Reply: Remicade Starting Concerns

Hi, I am glad that you are starting to feel better. I have always been told that what it...

Posted by LauraLW

4 Replies | Reply | Watch This DiscussionReport This| Share this:Remicade Starting Concerns Hi, I am glad that you are starting to feel better. I have always been told that what it...

Reply: can't bounce back

Hi Meg, I see your original post was 2yrs ago. I hope that these years have found you...

Posted by LauraLW

Hi Meg, I see your original post was 2yrs ago. I hope that these years have found you healthier and happier. I was touched by your post for a number of reasons. You're from SD! I live in extreme NW Iowa and have also lived in SF, SD for a few years and I still doctor there. (If you ever have to have surgery, Dr. Rolfsmeyer is the BEST.) I think your questions of physical triumph vs redefinition are interesting.
There are most definately triumphs. I hope you've found many inspirational stories and perhaps had your own triumphs. IBD seems to have an ebb and flow. You will be sicker than you can ever imagine. You will function with a daily level of pain that many can never understand. Then you will have a relief of that pain and though you may not be able to run marathons or work 24hr shifts, you will find the simple joys in everything you do. I'm glad that you reached out for help through the blog. Never be ashamed to admit you need help. I'm 30 and have had a very long road with Crohns-many hospitalizations/ surguries/unusal complications. I was told I should never have kids. My little girl is now 1. I am so blessed to have her. I was very sick again after she was born and I now have a permanent colostomy. When I read your blog, it reminded me of how I felt shortly after surgery. I felt like I'd lost my life, like I'd lost myself. I was depressed. I'm so glad I was honest with my doctors about my depression and took low dose meds for 9months. It helped me to stop crying all the time. It helped me to stop that negative record that kept playing in my head. I now can see my surgery as a blessing. Do you need to start redefining who you are? Absolutely. When you got your period your first time, when you graduated college, when you got married, you redefined yourself. You will never be done redefining yourself. And only you have control over how you do that. You can choose to define yourself as a victim of illness. You could. I don't know you all that well, but it doesn't seem like you. The most inspirational person I ever met was named Roger. I worked at a place for adults with disabilities. Roger was born with Cerebal Palsey. His brain functions at a normal level but he is severly physically disabled. He can only walk on his knees, has partial use of one hand and basically none with the other. He talks using a computer on the front of his wheelchair. This man insists on being independant in his dressing (except buttons) and bathroom. It takes him close to an hour to get dressed in the morning, but he does it, by himself every day. Buzzes us when he's ready to get in his chair. He knows that because there was a complication at his birth, he was robbed of a "normal" life. And he is probably one of the most joyous people I know. My hope for you is that you can allow yourself to get whatever help you need, that you can weather the ups and downs of UC, and that you can maybe find your own Roger.View Thread

Posted byLauraLW

4 Replies | Reply | Watch This DiscussionReport This| Share this:can't bounce back Hi Meg, I see your original post was 2yrs ago. I hope that these years have found you...

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