Fighting Crohn's & IBS/IBD

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Arianera
Arianera Posts: 128 Member
edited February 2016 in Social Groups
I'm interested in trying to re-invigorate this group and invite all folks with Crohns, IBS, IBD and other digestive woes like gastroparesis to join me. I'm interested in creating a supportive environment, with people who understand that everybody's digestive triggers are different and that there is no miracle cure or "one-size" solution.

To introduce myself. I'm Ari, mid-40's, female. Back on MFP as a mechanism to keep a food/symptom diary. I've got a colonoscopy scheduled next week to determine whether the reason I felt so awful in December was a virus, just my IBS flaring, or whether it actually IBD causing my troubles (suspicion of ulcerative colitis due to family history and ethnicity).

Needless to say I'm worried.

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  • godlikepoetyes
    godlikepoetyes Posts: 442 Member
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    Hi. I have gastroparesis, GERD, LP Reflux, and SIBO. I am very lucky that things are not worse than they are. I am looking on the up side of things. I met with a nutritionist yesterday and she assured me that I will be okay if I'm on a liquid diet. I won't starve. I won't be unhealthy. It is just a different way to get nutrients.

    I just came from a barium swallow test. Yuck. But I really do want to eat now! The last few days I've not been getting enough calories. I've been afraid to eat, and my appetite has been poor. Well, I've been eating enough by MFP standards, but I have not been getting enough to really lose weight. I have updated my activity. A LOT. I am getting in 10,000 steps, pretty easily. I am going for a couple of walks every day. I am cleaning and moving and, in spite of my crappy guts, I have more and more energy.

    The trick today is to not go all crazy and mess up my digestion. But....another thing the nutritionist told me is that sometimes there is absolutely no rhyme or reason with gastroparesis. I had read this, but my NP never told me this. She just made me feel like everything was my fault. I have made an appointment to see a new doctor.

    How do you guys deal with the nausea? I take Zofran, but my NP doesn't want me to take it on a daily basis, and my insurance will only cover 9 pills a month. She won't write an rx for Phenegran. I have ginger gum, which doesn't work when it's really bad. I cannot take Pepto. I put Sea Bands on last night, but they really hurt my wrists and I felt really WEIRD. What tricks do you guys have?
  • Arianera
    Arianera Posts: 128 Member
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    Welcome @godlikepoetyes

    I don't have any good suggestions regarding nausea (thankfully not something I commonly struggle with). While I have GERD, it typically isn't too bad as long as I stay on the PPI and avoid my triggers.

    Hopefully someone else will respond with suggestions.
  • 68116
    68116 Posts: 6 Member
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    Hi all...
    I have Crohns and UC. I am soooo glad to find this group up and running!
    Introduction:
    I am 5'5", 50, and was diagnosed about 6 years ago. When I started losing all my weight I thought it was because I had started exercising. I went from 180 down to 120 in a matter of months. I have been in remission for a while...but I suspect I have a flare starting. I am now on Remicade, Apriso, and 6MP. I am now up to 265 pounds. I broke my ankle a couple years ago so walking and exercising has been a challenge.
    I have also seen a nutritionist. She suggested a diabetic-ish food plan with fiber below 10. I find that fruits and veggies - the stuff that diets are made of- does not work for me. I tend to feel best on junk (candy bars, pop, donuts...anything that my gut doesn't need to work hard to process. However...with a diet like that I am gaining weight like nobody's business. I get especially frustrated with "healthy" folks having all the answers and being disrespectful about what I am eating. I am interested in the liquid diet...what is that? I am also interested if anyone has any really good stress reducing techniques I could try?
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    edited February 2016
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    I have severe fistulizing Crohn's colitis. @68116 I have tons of food restrictions too but have been able to stay within my calorie limit. I lost 20 lbs in 2 weeks (from bmi 20 to scary underweight) right before diagnosis ( I ignored symptoms for years and was basically on my death bed. Was in the verge of perforating and was hospitalized for 34 days on TPN, etc). I take Remicade and azathioprine (imuran). I am 3 days away from my 39+1 birthday and was diagnosed a year and a month ago. I am getting dose #12 on my birthday. I go every 6 weeks. When I am bad I drink vital which is made by ensure but more expensive (my RD gave me free samples) and is made for easy digestion for those with GI issues and malabsorption. I am back to my normal weight more or less of 133 at 5'8 and I lift heavy (not allowed to do cardio at the moment). I have to sleep when I get home and on my rest days. My exhaustion is bad. I also have to modify and restrict some exercises ( no direct ab work, no jumping) and I am not as consistent with my workouts as I was before because of the illness. I gained 20 lbs in 4 weeks once the Remicade started working (between dose 6 and 7). I colour for stress relief.
  • Arianera
    Arianera Posts: 128 Member
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    Wish me luck - the colonoscopy is tomorrow. Hoping for answers, but scared of what will be found.
  • singingflutelady
    singingflutelady Posts: 8,736 Member
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    Good luck today!
  • Arianera
    Arianera Posts: 128 Member
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    Phew. The initial results looked clear. Follow-up appt in a month to see what the biopsy said and figure out next steps. The trouble in December may have just been a virus + IBS :)
  • singingflutelady
    singingflutelady Posts: 8,736 Member
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    Yes! Awesome! I have Crohn's colitis (Crohn's in the large intestine) and the GI Dr and surgeon who did the scope didn't agree with what it was. GI Dr said Crohn's and surgeon said UC. My biopsy leaned towards UC but I developed fistulas which are very rare in UC but fairly common in Crohn's so that was my official diagnosis :)
  • 68116
    68116 Posts: 6 Member
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    I had the same "is it Crohns/ is it UC" when I was first diagnosed. Dr. said I had both...That was frustrating for me since he said to eat more fiber for one and less for the other. Now I had nothing to eat!! I tried ensure and boost when I was at my worst. I will try coloring...sounds fun.
  • ckdprevent
    ckdprevent Posts: 105 Member
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    I went back to GI doc today. He took 6 vials of blood. Doing 2 breath tests Thursday and Friday for lactose and/or bacteria. Colonoscopy next week. Hopefully they will find what is causing me my woes. Eating low residue is working best for me, but that is not healthy. Doctor wants to find out what is going on so I can eat high residue and not have issues. My GI doc in a different town diagnosed with me UC. When I starting working for a university health care center, that GI said I didn't have UC and not to come back unless I had bleeding. I only have bleeding if I take an NSAID, so I don't take NSAIDs. Trying on my own to stop the multiple issues. Family physician sent me back to GI doc, now 9 years later. So now he is testing me for everything.
  • Arianera
    Arianera Posts: 128 Member
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    @ckdprevent hope the testing leads to answers. I think right now the hardest part is not knowing what to try next.

    Welcome to the others that have joined recently.

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