Newly diagnosed, not sure what to expect.

[justonlyjohn]

Hello Folks. It was just determined, via colonoscopy, that I have Crohn's disease. Skipping most of the steps people go through when grieving, I immediately went to angry. I am 45 and I already suffer from severe and at times lethal allergies. This disease alone has greatly reduced my quality of life. Now, I have yet another disease that is incurable and painful. I also have asthma.

Please forgive me for complaining. I am angry because I spend less time with my children and wife, I cannot continue studying the martial arts, and I have absolutely no idea what to expect. I used to be quite active, but am now lethargic.

I was on a six day regimen of Prednisone and started taking Apriso. After four weeks, there has not been any changes in my condition. Unfortunately, my cramps are worse and my GI has determined my Crohn's is no longer a mild case. It is now a moderate case that requires Humira and 60mg of Pred/day until I start the Humira. I am to continue the Apriso but have been told not to worry about what to eat. Does that come later or what? Admittedly, anything I eat causes painful cramps but I though there existed a Crohn's diet. Sadly, many foods I have read that help people with the disease are foods I can never have, especially fish and nuts because of my allergies. I also may be allergic to the Pred because it gives me hiccups and bile burps.

My GI states that there is no proof that some foods trigger flares and that I should eat what I want. Have others run into something like this? Is my doctor moving too quickly to Humira?

Thanks for any advice offered.

 

[DustyKat]

Hi justonlyjohn and :welcome:

I am so sorry to hear of all you are going through.

The Prednisone: The short burst straight up is unusual. You can take high doses for a week without a taper but once you get over 7 days then a taper will need to be done. The normal course of action would be a high dose for 2-3 weeks and then taper over the next 6-8 weeks. Of course if your doc thought it was mild, which obviously he did, it still seems a little out of the ordinary.
Prednisone is known to be harsh on the stomach and for many people that create the problems you are experiencing. To alleviate this GI's will often prescribe what is called a PPI at the same you commence the Pred.

Apriso is a mild drug that is normally used for Ulcerative colitis. Is your Crohn's located in the large bowel only?

Once you reach moderate - severe disease status you move past the 5ASA's, like Apriso, and onto the immunosuppressives like Imuran/6MP or the biologics like Humira.

Diet: Now that is a contentious one. Many GI's say diet plays no part in Crohn's. Personally, I don't think it causes Crohn's but I do believe that it plays a role in alleviating symptoms when flaring and also in helping maintain remission. We have a diet here that contains loads of great info on what people find useful for them and yes there are diets out there targeted at Crohn's such as the LOFFLEX diet and the SCD diet. You will find threads about in the diet forum or use the search function on the tool bar at the top of the page.

Enteral Nutrition is another type diet that many use to help induce remission, it is a complete liquid diet. For may parent's they also use it as a way of supplementing nutrition when on a normal diet and adults use it as a supplement to help maintain weight.

You will also find that there are others here that also suffer with food allergies and other diseases over and above their Crohn's so you are not alone there John.

If your disease is restricted to your large bowel you shouldn't suffer the same extent of malabsorption that those with small bowel disease do but it still may be worthwhile having bloods done to check your levels of:

Iron Studies
B12
Vit D
Magnesium
Zinc

If you have any questions please don't hesitate to ask and please click on the underlined words in the text as they will link to either the wiki we have here or the forums I have linked you to.

Good luck!

Dusty. xxx

 

[nevilletanner]

hello , i myself was diagnosed with crohns last year after being rushed into hospital as i had pain that was 9/10, after two ct scans i was told it was crohns.

what i have found is that certain foods do aggravate my stomach and cause pain and the big D. its taken ages to work out what i can / cant eat, but at least now i can pretty much go pain free for most of the time.

i was also on PRED for a few months ( the last month was the taper ) and i have also been back on it for a week at a time when required.

the only other thing that's happened was that i get a lot of pain in my neck which turned into huge migraines. turned out to be osteopinia ( crohns related illness).

what i will say is you learn to adapt and so does your family ( you may not think so currently ) , my family know that i have to have use of the bathroom repeatedly in the mornings so they get there use before i get up etc ..

Honestly i can say things will get better as you adapt, you get new hobbies ( in my case its reading and my husky dogs), and family life gets better as time goes by.

 

[justonlyjohn]

Thank you both for your support and encouraging words. I will start reading more from this site as it appears people here have been through it all. It is saddening that we have to be here at all. My family is very supportive; unfortunately my 15 year old daughter has allergies and digestive issues as well. She is having difficulty understanding what her future may be like (especially after seeing how much I have been suffering), however for now she has been scoped and there is no indication she has Crohn's. Whew.

Does anyone know how to get the Pred to stop causing hiccups? I was up all last night with the hiccups and am now exhausted.

DK - thanks for the links.
NT - the husky is a beautiful dog, wish I weren't allergic...

Thanks again and keep well.

 

[nevilletanner]

pred is known to cause hiccups what i have read,
your to take them on a empty stomach and FIRST THING IN THE MORNING.

makes sense at the hiccups would well be gone (hopefully) also pred has the affect of keeping you awake, so again mornings are best.

not one husky but two there defo a big part of my life now),
after all they have to have there daily exercise which use to be a issue with me as i often find that i feel to tired, even to the extent of having a afternoon power hour in the bed.

one thing that i have found is that a electric blanket works wonders when i am in pain, a few others have tried this and have also said how much it helps.

well if you have any more questions or just need to air your worries -
dont hesitate, there a good bunch of peeps on here.

 

[justonlyjohn]

I am not sure where to post this question, so I'll place it here and see what I get.

DK - I never answered your question regarding where my IBD resides: apparently I have friability in two different places of my large intestine and one place in my small intestine.
NT - I have to take my Pred three times daily, so I basically have acid reflux all day and all night. I hate it!

Anyway, my next question is one I didn't see addressed in the "Diet and Nutrition" area: should I try juicing (or whatever) so as to give my intestines a break while they try to heal? Should I take vitamin supplements? When I asked my GI these questions he simply said "If it makes you feel better to do it, yes, go ahead and do it." I noticed he didn't say if doing so would actuallly be beneficial. I get the impression he feels I am just anxious and eager to try anything. Unfortunately, I don't have the finances to spend on drinks or supplements if they are not going to be absorbed. He said, "There is no proof that taking supplements or juicing does any good because each person is different; but if it makes you feel happy to be doing something, then go ahead and do it."

There is a part of me that wants to try juicing before going on the Humira so I can definitely tell if it was the juicing that did the trick rather than the Humira. Does that make sense?

Well, thank you for reading all of that and I very much appreciate any insights offered.

 

[nevilletanner]

just read your latest post .. ask your doctor for OMEPRAZOLE this should sort out your acid reflux .. thinking back i had the same thing but it was/is caused by the crohns and not the PRED ( that applies to me and may not be the case with you) .. these will block the production of acid in the stomach , there a one a day time release capsule.

As to the juicing well thats a hard call as some swear by it and others say its a load of rubish so really your doctor is right (personally i cant say either way as i have never had the urge to try it).

Vitamins tends to be a different story, crohns in the small intestine does affect absorbtion of minerals and vitamins .. my doctor has prescribed a single multivitamin and a calcium/ vit D3 tablet called CALCICHEW-D3 FORTE but i defo have trouble absorbing these as i have osteopinia. I also tend to drink a lot of milk and fortified milk drinks but thats just me.

the only real way to tell if your low on vits/minerals is to get a full blood count done on a regular basis to work out whats being absorbed etc.

as to eating to giving your intestines a break .. there is diet options to do this, no doubt others will post on here about that .. personally when i want to do this i switch back to the bland boaring foods like mash potatoes with a tin of soup over it ( looks gross but really easy to digest).