• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Newbie introduction!

Greetings to all who inhabit this wonderful forum! I will try and keep this introduction short, but I usually fail :ybatty:. I am one of the healthiest sick people I know! I work really hard it. I'm generally an upbeat and happy person. I'm a single mom of two amazing children. I love to run and swim and be as active as I can. I was diagnosed with Crohn's in 1995 after a year of illness which began after the birth of my daughter (Jackie, now 18). I had never been sick a day in my life before that! After about 3 years I was in remission and we tried for another child. Sadly I had a miscarriage. It was devastating and caused considerable stress. I was able to conceive shortly after and consider it an amazing blessing. Unfortunately, I flared terribly while pregnant and ended up on a lot of bed rest the last couple months. My son was born 6 weeks early, amped up on prednisone, but overall pretty healthy. Following his birth my health declined steadily for about 2 years. I was hospitalized lots with abscesses, fistulas and obstructions. A couple days after his second birthday my bowel perforated. A year, two resections (a section of duodenum and the more usual terminal ileum, ileocecal valve and cecum) and a fistula (surgery site to ovary and rectum) surgery later I started Remicade. It gave me my life back and I've been on it since...I know, more than 10 years. I don't know many people who have had success with it for that long. I've had only minor flares since then. About a year ago, however, I started having quite a lot of joint pain which I attributed to all my running...it is a stress reliever for me and I've had a lot of stress. During 2012 I ran my first marathon and completed 3 halfs. The pain always seemed to get worse the last couple weeks before an infusion and then improve with the infusion. 6 months or so ago my hands got involved, by 2 months ago, they hurt so badly I couldn't button my pants or hold the steering wheel to drive without a lot of pain, and I felt like I lost all the strength in my hands. I finally told my GI (I know, bad, should've got on it sooner.) He immediately referred me to a rheumatologist who got me in asap and diagnosed arthritis everywhere. Lower back beginning to fuse, feet, ankles, knees, hips, shoulders, neck, wrists and hands...my hands are the worst. I've been doing methotrexate injections since and I guess its starting to help...but boy did I struggle with the mtx the first couple injections. It's been a tough couple months. The fatigue has been horrible.

Sorry, this was supposed to be short. My son Dylan will be 14 next months. He's always had GI issues and unfortunately has also managed to get every odd virus, etc. that goes around. He was diagnosed in 2010 with Crohn's. I will dedicate a post to him in the parent forum. He has been through prednisone, imuran, Entocort, 6 plus months of enteral nutrition followed by a weaning period and prevacid. He had good luck for about 7 months on Remicade but then had symptoms again. He did a small run of Prednisone, 40mg for two weeks, that really turned him around and got his gut back on track...but he has ALWAYS had bad side effects - huge moon face, sweating profusely, anxiety, lots of leg cramping, inability to sleep and even some ulceration in his esophagus. Doc's plan was to wean him off the prednisone and add mtx injection along with the Remicade. Once he got down to 20mg of pred (last week) we were to add methotrexate injection. You can imagine how hard this was given I had started it 5 weeks earlier with fairly significant issues. Anyway, he has indeed struggled. It's very frustrating and is the reason I finally posted. We see the doc in the morning...but I"m wondering if anyone else experienced very sore feet after mtx? His feet aren't really swollen, maybe his right a little bit around his ankle bone...but they hurt him terribly. He's limping something awful. And he is SO frustrated that all his current problems really are MEDS! AGH!

So my last bit of introduction is that my brother who is one year older than I (I'm 41) was diagnosed in 2008 with Crohn's after having been sick for a very, very long time. He spent nearly a year in the hospital after nearly dying alone in the street...sad story. But good news is that he didn't die and despite many years of having the disease run rampant before he got help, he is doing considerably better. He has come back to the family and is a million times happier. We are so blessed to have him. When he was so sick I could not stand being unable to do anything. I heard about CCFA's Team Challenge and signed up for the NAPA08 event. It was an amazing experience and connected me with an unbelievable support group that has literally carried me through the last several years struggle with Dylan's disease. It helped me find running, which I'm not GOOD at, but LOVE. I"ve done 6 events since then and raised over $20,000 and try to raise awareness every chance I get. It is a passion. I'm glad to now be a part of this forum as well. From viewing it over the last few weeks it seems to be a great mix of people. Overall I strive every day to not let Crohn's run my life or my son's. Through my time with the disease I have become infinitely stronger and more patient and more full of gratitude for every good day, every day my son feels well...I'm more balanced. It has had its blessings amongst the challenges. Thanks again and can't wait to meet all of you! Jodie
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum.

How are things right now for you tummy and joint wise? Do the doc ever do any checks on your vitamin levels and if so how recentlyand were you given the actual levels? Are you still on the Remi with the MTX? Do you notice any difference with dietary changes?

I am sorry to hear that your son as this too, I have been on MTX myself but did not experience issues with joint pains but is is worth checking out our sub forum for this in case someone else has had this problem: http://www.crohnsforum.com/forumdisplay.php?f=88. Also do the docs ever keep an eye on his vitamin levels? Definetly check out our parents forum, there is a wonderful group of mums and dads here to have a chat with.

I am pleased that things have been going well for your brother with his crohn's - he is on any meds for this?

I will be keeping fingers crossed that you can soon all be feeling well, please keep us updated on how the appt goes today.

AB
xx
 
Thanks so much for your reply AngryBird ~ I see you are expecting...very exciting! Congratulations! And thanks for your support Julie345.

I am on Remicade every 7 weeks along with the weekly mtx injection. My tummy feels good other than nausea the day after the injection and that has improved considerably since the first one. I am also on 1000mg of Vitamin D daily and my rheumatologist is fairly sure that getting that into the normal level is the biggest reason that I"m feeling generally better since the MTX hasn't really had enough time to do its wonders yet. My body is still sore. My hands are tolerable - definitely better - but they are weak and clumsy...I'm not sure how else to explain it. I'm constantly dropping things and fumbling with them. Still they don't ache. My back and knees and ankles, etc. are improving. I've been doing a lot of swimming and spin classes and yoga to try and keep the joints loose, and a little less running - though my heart and soul really just need running...and my dog. And my RA doc said for now that running - movement really is better than not. My diet is a bit day to day in that I"ve learned over the years how to really listen to it and sometimes I can eat things that other days I can't. I do go on a liquid only, gluten free diet when Crohns starts to flare and it helps keep things in the right direction.

My son was also extremely low on Vitamin D - he takes 2000mg daily along with 1000mg calcium and a multivitamin. He was on enteral nutrition for over 6 months in order to put a little weight on. It never helped him achieve any kind of remission. He went on Remicade in March and went back to a fairly regular diet. We tried gluten free for him - very faithful and careful for 30 days and it didn't seem to make a bit of difference. His ped GI felt it better that we let him eat what he can when he can at this point as keeping weight on him has generally been a challenge. He did gain about 15 lbs on prednisone....not necessarily good weight, but its nice to see him with some meat on his bones.

Sadly my brother isn't doing really well...he's just so much better. He was so sick for so long that he lost all his teeth (we thought he was on drugs, but it was just malnutrition). He's had fistulas to his bladder that really caused him problems. He is on Humira and it has made it so that he can function. He is a fabulous dad and very active with his girls but is always in pain. At 6ft7 he is rarely over 150lbs. It makes me sad. He is a real inspiration, however. I just so wish we could make it all better for all of us.

Thanks again for the support,
jd
 
Top