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New User, Newly Diagnosed, Struggling a Little

Hi everyone! I am new to the forum. Diagnosed Aug 2014 at the age of 31.

I started having some pain in the lower right quadrant followed by horrible intestinal discomfort late July 2014 - this led to one ER visit and a few doctor visits before I got my eventual colonoscopy Aug 6 2014 which led to a Crohn's diagnosis. Interestingly enough I suffer mostly from constipation rather than diarrhea - I live in constant fear of a sigmoid blockage.

So anyway I was immediately put on Prednisone which of course worked, after which I went on Pentasa which worked OK for about 2 months until last week - I got pretty bad symptoms again. I am back on another course of Prednisone so my GI can discuss more agressive treatment.

I am scared to death of 6MP or similar medications (Humira, Remicade) because they all come with the standard "you might get agressive lymphoma, especially if you're a guy." Since a few days ago I have gone to a liquid diet. I feel like I will do anything to avoid the symptoms - except risk this agressive form of lymphoma that can apparently kill in a short time.

Anyway, This is where I'm currently at. Trying to do my best in taking vitamins and drinking mostly smoothies and looking into juicing. Any comments or advice would be appreciated! Thanks all - looking forward to joining the community!
 

DJW

Forum Monitor
Hi and welcome.

The first year can be overwhelming.

I've recently started Remicade (September) and have been on imuran for a year and a half. Having suffered through so many of the Crohn's complications over the years these meds were more than welcome. The risk is extremely low on these meds. The risk for complications including colorectal cancer is significantly higher if your crohn's isn't treated properly.

Hang in there. It gets better. Sending you my support.
 
Welcome! The meds can be really scary. Just before I was officially diagnosed ( my primary had said it was either ibd or a bad infection) I looked up the meds and convinced myself I would never need anything more than mesalamine. How wrong I was. Just remember it is your choice and they monitor very closely for any signs of lymphoma or otherwise. I believe the risk goes from 2/10 000 for a healthy person to 4/10 000 with meds . For me I just have to think of it as a risk I am willing to take to gain my quality of life back.
 
Thanks guys! I appreciate the encouragement. Part of me would much rather just go liquid diet rather than do some of the more potent meds. I'll be considering it as I prepare for my next GI visit 12/13/2014. For me lately I have had off an on sigmoid pressure - have been on liquids for 2-3 days, prednisone about the same amount of time 50mg.

Thanks again for the support!
 
I'm getting ready to start the Remicade, after 6 years on Asacol and Imuran. I can't tell you how excited I am to try it, I just hope it works! I have a friend on it and she's been on it for about 10 years now, basically totally in remission. I'm hoping for the same results! I know it's scary, but personally, I am finding it more and more difficult to manage the day to day of crohn's. Liquid diets are hard, I tried that, too. All the juicing gave me bad gas, which was difficult to deal with at work! Good luck to you!
 

dave13

Forum Monitor
Location
Maine
Welcome

Like DJW,I am also new to Remicade,since July.You have to consider the damage this disease will do to you with out proper treatment.I do not want to be on Remicade,I don't think anyone wants to be on any Biologic or med.We do what we need to do to fight this disease.

Juicing is a great way to get nutrition and a good diet,in my opinion,helps in the fight.We sometimes need more help,I think of diet as a great addition to proper treatment.Make sure you bring up your concerns with your doctor at this months appointment.Think of questions you may want to ask,always voice concerns you may have.We can be assertive with out being rude.Have your options explained to you.

Good Luck!
 
I don't really know if jucing helped me, I did it sporadically and still ate semi-regular meals. To be honest, in the past six years, I only felt good for a period of about four months and that was right when I started the Imuran. 100 mg to start, plus 800 asacol, but I felt great. I had lost weight (intentionally) and was able to be quite active! That stopped somewhere along the way (we started fertility treatments and I think that may have done it). Since then, it's been getting worse, but slowly. I would be up for trying the juicing again, but I'd like to research it more first. I cut out red meat and soda and am working on the whole 'white flour' and sugar thing. No alcohol or smoking, either. I really hope a change in diet can help more than it is now.
 
Thanks for the advice. I think I am one who wants to try and avoid the high potency meds (especially the ones with slight cancer risk) even if it means going all-liquids. I am willing to stick with this if it means avoiding symptoms without strong meds. I have read about lots of people that have had success with all-liquid diets or enteral nutrition - I do understand that this doesn't work for everyone.

I have been on ALL liquids for the past 2-3 days and I don't find it to be that bad - I'm struggling a little to get enough calories. I was slightly overweight, and have some fat to burn, but I know I can't continue that way forever because eventually I will run out! :)

I'm going to try Boost today and see if that works - I'm afraid of it causing gas because of the "milk ingredients." We'll see. I've been mostly taking Gatorade, Bolthouse Farms/Naked Juice drinks, Vitamin Water, etc along with multivitamins.

Like I said, I'm new to this - just trying to find a way to be healthy without strong meds even if it means drastic change in habits. I'm also working on stress/anxiety which I know I've had issues with in the past. I'm in educational administration, which can include stress at times - although I tend to stress more about the condition of CD itself - working on it.

Thanks for all your comments - they are much appreciated!!!! :)
 
Those drinks with 'milk ingredients' scare me because of the dairy. I used to love the starbucks bottled drinks but that milk is killer! Do you have a juicer? We bought a nice one, and a good recipe book to go with it so we could get a nice balance. It was a lot of work to prepare (shop for, portion out, juice and clean up) the juices AND prepare regular meals for my family. My husband was on board with juicing but my 10 yr old son wasn't a big fan. He wants to 'eat'. Kids, LOL.
I completely agree about trying natural things first, I tried (as best I could). I think with this latest round of surgeries (two in a month) it freaked me out a little bit. My surgeon says I could run into real problems (ostemy bag) if we don't get it under control NOW. That scares the crap out of me. I'm too young for that. Not to be gross, but do you still have bowel movements when you juice or is it just easier on your digestive track to do liquids?
 
The dairy scares me, too - although I'm still in the early stages of learning what bothers me and what doesn't. I ate "yogurt shop" yogurt the past couple of days and I suspect it gave me problems (bad gas pressure around the sigmoid) - some claim that the "milk ingredients" in Boost do not cause problems because it isn't the same as lactose, or milk sugar. I don't know - I will buy one and try a small amount and see what happens, the drink more if it agrees with me.

I do have a juicer! My wife and I got interested in juicing some time ago for general health reasons, but got out of it - it can be a pain to clean afterward. We are looking at getting back into it. I don't know what BM's would be like with juicing, as I have never gone only liquids until now. At this point I don't care much as long as I can get proper nutrition and avoid symptoms! They are so horrible!

I do feel for your son - I have three boys of my own and couldn't imagine them having to go through this. As a 31 year old man its a little easier to go without solid food and understand why.

Thanks.
 
Thanks, Cit. I will check him out. Seemed to do OK with Boost today. Down to nearly no stool at all (all liquid diet). Thanks again
 
I am like you, my friend; scared to try any of the more aggressive treatment options out there as I have 3 boys. I stick to the lower totem pole drugs such as mesalamine. I made the mistake of treating my crohns with pain management; Percocet 7.5/325 and Butrans 20mg patches. This helps me a lot BUT I struggle with the fact of being dependent on these drugs to lead a everyday life. I was diagnosed in 2010 through colonoscopy and in 2013 underwent a ileocolectomy/appendectomy; thinking this would solve all my problems. Boy, was I wrong, after the surgery, I had approximately 2 months of total remission, but that is when the joint pain and mouth ulcers began. I began a food diary in which I basically cut out all fried, dairy, pasta, hamburger, chocolate, and other items from my diet. I have lost 40+ pounds in the past 6 months but deem that a great things since that could be 40+ pounds I could be carrying around on my joints. I am due to see a joint specialist this month so hopefully he can help. I wish you the best of luck and feel free to ask me any questions; we're all in this together! Oh, I've also discovered that if you eat just a small portion of food at a time, not achieving fullness, that seems to help keep you from feeling the need to vomit. Best of luck and happy holidays.
 
Welcome to the club no one wants to be in!i realise there are a lot of worries about medication,I just love the warning leaflets with your meds,needlessly scary and dr google is obviously a manic depressive it's never good news,just remember these meds help,you,ll be closely monitored while on them and have way more blood tests than anyone likes just after I was diagnosed I got fed and asked them to fit a tap!every doctor I saw wanted blood.
The diet thing is very difficult and as you,ll have seen on on the forum has very variable results and do you want to go through your life eating juice.if your in early days you do have to bland your diet out but it does get better just avoid obvious triggers for you as varied and healthy a diet as possible is best for crohnies and non crohnies.good luck all the best.
 
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