Hi!!! I'm Jessica, I'm 28 and newly diagnosed with Crohn's disease. SO MANY QUESTIONS!!!

[jessicashea685]

Hi everyone!! I have been browsing this site since happening upon it right after I was diagnosed on 1/31/2014. First off, I think it's wonderful how open and helpful everyone is here!! Thank you, even though I've just joined I feel like I have gotten so much insight on the disease just from other people's posts. You all are the best!!!

So, here I am a month and a half after being diagnosed and I feel very lost... I was diagnosed with Crohn's by a GI after a colonoscopy. I was still coming out of sedation when the doctor came in to explain the disease to me. He put me on Sulfasalazine and told me to make an appointment with him in 6 weeks. No other info...

For the 2 weeks following the colonoscopy I was in complete misery. I don't know if the pre-colonoscopy prep threw me into a flare or what happened but I felt like I was dying! Constant cramping, false urges, nausea, diarrhea, the whole works!! I went to my GP who did blood work and an exam and determined I had a kidney infection on top of all of that. After a couple of days and no improvement, I made and appointment with my GI's nurse, she prescribed me a Prednisone taper, starting at 40mg and tapering down 10mg/ week and Flagyl. I suppose that helped a little, I started feeling somewhat better, I still have some cramping and slight diarrhea but I feel it's manageable, not ideal, but livable. I finished the Flagyl Rx and am down to 5mg of prednisone daily but I still feel icky. My GP has done blood work and said I am more anemic than she has seen me in the past but just to get extra rest and drink lot's of fluids.

My GI has now prescribed me Humira, it's sitting in my fridge now but I just feel so lost, like I'm not getting the answers I need as to what is happening and going on with my body. Like what does remission feel like? Is Humira really necessary at this point? Why do all of my joints hurt? why am I sooooo tired all the time? Every day it seems like there is something new hurting, and I am not a hypochondriac... I had unrelated cancer, surgeries and chemo in 2008 and it was easier to deal with than this Crohn's diagnosis. Getting ready for work in the mornings is the hardest thing ever! When I finally get home I'm so exhausted all I want to do lay around, my husband has been the best, we were just married in 10/2013 so this is not at all how I imagined our first 6 months of marriage!!! UGH!!!

Anyways, I would love to hear some of your advice on how to deal with Crohn's in the very early stages of diagnosis, questions I should be asking my GI ( I have my first appointment with him this week to discuss the Humira and the Crohn's diagnosis) etc. Or if there are other less invasive treatments besides the Humira I should be looking into, (the side effects seem so scary).

Sorry for the novel, believe it or not this is the condensed version! I really look forward to hearing from some of you!! I'm a super hot mess right now!!! Thank you so much for your time!!!!

 

[mdd]

Welcome! This the place to be. Ask we will try to help you. Even to vent is good. We know how you feel! :smile::hug : Maria

 

[valleysangel92]

Hello Jessica! welcome to the forum, I'm glad you've joined us and that the posts here have been helpful to you so far.

It is pretty common for the colonoscopy prep and the procedure itself to leave us feeling icky, and can often trigger a flare up of symptoms, its a lot to put anyone's digestive system through, never mind a fragile one like ours.

You mention that you are aneamic, are you on any iron supplements at the moment or is there a monitoring system in place to keep an eye on it? Have you had any of your other vitamin and mineral levels checked recently? If not, that might be a good place to start.

It is common for people with crohns to find that they have little or no energy, this can be a direct result of the condition, your body has to work extra hard to fight the inflammation and repair the damage, which is exhausting by itself. It can also result from constant pain, being up at night using the bathroom or just having a poorer quality sleep. It can also be the result of not absorbing nutrients properly, which can lead to mal-nourishment which then causes all sorts of problems.

Joint problems are also common with crohns, the inflammation in the digestive tract can sometimes also cause inflammation elsewhere in the body, lack of correct nutrition can have a huge impact on the joints, joint pain is a common side effect of medication and people with crohns have a higher chance of developing arthritis. Personally, I have had joint problems longer than digestive symptoms and I'm now being screened for all sorts of things. A lot of people find thatonce the crohns flare if brought under control, they get an improvement in the joints. Make sure you ask your GI about these symptoms, if they don't improve with time, you may need to see a rheumatologist. You can find out more about extraintestinal (outside the digestive tract) manifestations of crohns here

It is great to hear you have a supportive husband, sometimes that's half the battle .

I can understand your concerns about starting such an aggressive medication so soon. Treatment of crohns is very much an individual thing which depends on the severity of the inflammation, any complications that may be expected, severity of symptoms and the GI's personal preference. Some GI's prefer a 'bottom up' approach, where they start with the least aggressive form of treatment first, and then go on to more aggressive medications if the first are unsuccessful. Others prefer to start with a more aggressive medication, known as the 'top down' approach. In this case, the GI may prescribe a drug like humira in the hopes of avoiding the crohns spreading and/or causing complications and lowering the likelihood of surgery.

I would ask your GI why he wants you to start Humira now, it may be that the biopsies taken showed deeper inflammation than what could be seen in the scope, or it may be that your blood tests show very high inflammation markers etc. You may find it helpful to take a look at our treatment section.


You could also check out the crohns and colitis foundation of America for more information on the condition and potential treatment options.

Don't worry about how long your posts are or if a question seems silly, nothing is TMI here and we will always do what we can to help you. We are not doctors so we may not have all the answers, but we do understand what this condition is like. Feel free to vent, rant, ask whatever you need.

Heat packs are wonderful for stomach cramps, and you may find it helpful to keep a symptom diary, record what symptoms you have, how bad they are (score pain 1-10) record how stressed you are and what you've eaten (and when) this can help show any links between what you do and the symptoms you experience.

 

[valleysangel92]

One thing I forgot to say, yes a lot of the medications have nasty side effects, but it's important to remember that side effects are only a possibility and are not definitely going to happen to you. Most of the common ones are horrible to deal with, but they are not serious and won't affect long term health. There are some more serious effects such as other organ damage etc but they are far more rare and you will be closely watched for these. If your doctor is thinking of using one of the aggressive medications, it means that they think it is worth any risk. Untreated or undermanaged crohns is far more serious than most of the side effects of the medications. I hope this reassures you a little.

 

[Tesscorm]

Hi Jessica, welcome to the forum!

As you've found, there are lots of great members with tons of info here and lots of support! You've already been given great advice!

I don't have crohns but my son does. There is a learning curve at the beginning and it certainly doesn't help when your GI gives you little info at the beginning and you're feeling woozy on top of it! :ywow: Re the meds, some of this has already been mentioned but you'll find most of the crohns meds do have the risk of side effects, some of which are pretty scary! However, undertreated or untreated crohns also comes with some serious side effects. My son is on remicade and it took a while for me to come to terms with this (still scary if I let myself dwell on it too much! ). I suppose what has helped me accept it is realizing that remicade will give him a normal quality of life. We all take risks every day because those actions improve our lives, just one example, my son played competitive hockey, I was terrified of the risk of serious injury at every game but, he loved it and playing most certainly improved his QOL. I was willing to take on those serious risks simply for him to keep having fun! So, I guess, that's how I justified it... his GI explained that by allowing inflammation to continue to simmer and cause permanent damage, surgery and worsening QOL would likely result. However, having said this, do be sure that your GI is aware of your past cancer and do educate yourself on tests, results, etc. and be your own advocate.

Enteral nutritional (nutritional formulas) are often used to induce remission or help sustain remission (at least for kids, it's often used around the world as a first treatment but it is not as commonly used in the US... this may not be the case for adults??). Although my son is on remicade, he continues to drink 1-3 Boost shakes per day. I have read studies showning that supplemental EN has increased remission lengths (even when on meds) and the shakes supplement his nutritional intake. There is a subforum under Treatment for Enteral Nutrition.

Also, you may want to do some research on Low Dose Naltrexone (LDN) - this med is quite safe and has shown success at treating crohns. However, studies have been small and most GIs do not consider it a reliable treatment. I would have liked my son to have tried LDN before moving to remicade but his GI was adamant that we shouldn't 'wait' while we tried something else. There is another subforum under Treatment for LDN.

Good luck at your appointment!