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Crohn's Disease
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Posted 4/8/2023 9:39 PM (GMT 0)
I've had IBD for the past 4 years now, I was first diagnosed in 2019, at first I didn't think much of it but as I got older my symptoms seemed to get worse. I was never the "depressed stress or anxious" person but as life continued with this disease it has taken a huge toll on me. I really don't know what to do, it seems like this disease has really taken over my life and I really mean that, from a kid that use to go out all day enjoy time with friends to now a kid that stays at home worried about whether or not he could even get a job to support his family. I get extremely stressed out about how my life is with IBD. I always question myself, am I going to be normal?, will I be able to go out with my friends without having to worry about using the bathroom every two seconds, Will I be able to go gym and gain weight?, all these questions racing through my mind. My main issue I'm facing with IBD is that I'm unable to control myself, and the urgency of going bathroom, these two factors play a big role in my life as these are the reasons I'm unable to do the things I enjoy. My question to you guys is, how do you tolerate with depression, stress and anxiety? how did you overcome this, how did you overcome not having to worry about using the bathroom the second you step outside?. I really need help
Posted 4/9/2023 12:42 AM (GMT 0)
First of all, Welcome to HW,

You've come to a great place for advice and support. Many here will truly understand exactly what you're going through. I want to assure you that everything you're feeling is totally normal. This disease can be very overwhelming at times. but also want to assure you that you can get all of it under control.

The absolute best way to get rid of all the anxiety and fear that you're having right now, is to get your symptoms under control. You didn't mention anything about your current treatment plan(?). Could you give an overview of your current/past meds, and your relationship with your GI?

Medications have come a very long way. Since you were diagnosed 4 years ago, I'm sure you've been on something, but obviously need to get on a more appropriate treatment. You might need some updated diagnostics as well to get a baseline on just what's going on.

I would also ask, what kind of support do you have at home? It would really make a huge difference if you had someone that can advocate for you. When you're not feeling well, it can be difficult to get demanding with your Doctors. Hopefully, you can have a family member attend appointments with you and give a clear picture on what's going on, so they can get more aggressive if necessary.

Lastly, as tough as it might seem right now, try to stay positive. You can certainly get this under control and go on to live a very normal life. There might be difficult times, not unlike what you're going through now, but they will pass.

Hopefully some other members can comment, esp. with some advice on the urgency symptoms you're having. Hope you're feeling better very soon. Keep us posted.
Posted 4/9/2023 12:59 AM (GMT 0)
thank you for the kind words, the current medication I'm on are (15mg panafcortelone [3 tablets], 20mg pantoprazole [1 tablet], 4.8g mezavant [4 tablets], also 1 vitamin d and calcium tablet to help with the steroids. My only past medication that I recall and that worked for me for 2 years was Pentasa. I also believe I have the best support I could get at home
Posted 4/10/2023 6:39 AM (GMT 0)
Is your IBD diagnosis ulcerative colitis or Crohn's disease? Or indeterminant (not sure)?

How long have you been taking the panafcortelone?

When was your last colonoscopy?
Posted 4/10/2023 6:43 AM (GMT 0)
my IBD is Crohn's and I've been on panafcortelon for around 1 month and a couple days, for the panafcortelone, each week I go down by 5mg i started at 40mg. As for my colonoscopy it was roughly around 3-4 months ago. I also have a question that's not related to any of this but if a food is bad for me and I constantly have it does it worsen my symptoms in the long term? for example say I have a lot of milk does it damage me more and basically make my IBD worse or do I just face the consequences for that day and ill be back to how I was the following day and just wont affect me in the long run?
Posted 4/10/2023 6:50 AM (GMT 0)
Where are you located?

What were the findings from your colonoscopy, in terms of location of disease and severity?

Medications like mezavent and pentasa are only for mild ulcerative colitis. They do not work well at all for Crohn's disease. There are many other medications that are more appropriate for treating Crohn's disease.

Steroids like panafcortelone are effective at helping a person feel better quickly, but they are not a good long-term solution. They should only be used when really necessary and only for a few weeks or a few months at the longest.

As for food, it is different for everybody. Food probably doesn't make your IBD inflammation worse, but it might make your symptoms worse. Each patient has to figure out what foods they tolerate and what they don't. Try to eat healthy food, but if something bothers you, then don't eat it.
Posted 4/10/2023 8:04 AM (GMT 0)
sorry so just to clarify if I eat food that my body cannot handle e.g. milk, it will only worsen my symptoms for that day and wont affect my IBD in the long run. Sorry for the hassle I just really need to confirm it cause i've always been curious
Posted 4/10/2023 8:16 AM (GMT 0)
Well, it can get a little complicated. Many people with IBD develop lactose intolerance too, so milk gives them digestive problems. But it does not make their IBD inflammation worse. Just their symptoms in the short term.
Posted 4/10/2023 8:57 AM (GMT 0)
ahh ok that makes a lot of sense thank you so much, I've always been scared that if a food that triggers my symptoms also affects my IBD in the long term. Foods that contain diary for example trigger my symptoms and I cant stop having it cause I genuinely enjoy it, so it makes me happy to know that it only affects my IBD for a couple days and not affect it in the long run. thank you once again
Posted 4/11/2023 12:08 AM (GMT 0)
There are some typical avoidance foods that most stay away from. It's advised to particularly avoid certain foods when flaring, but many avoid them at all times. Some examples include, anything with a husk, shell or fibrous skin. Nuts, popcorn, corn, seeds. With narrowing and inflammation, these types of foods can get caught, and have difficulty passing and may even cause blockages.

As for milk, as @beave indicated, you could get tested for lactose intolerance, but if you have you would likely know. Milk would make you very sick, bloated perhaps having diarrhea as well.

Also, I do feel that you might be undermedicated. Pentasa is an antiquated med for Crohn's and very ineffective. The steroids will work, but are not intended as a maintenance therapy. You would likely need to consider much stronger meds at this point.
Posted 7/8/2023 3:25 AM (GMT 0)
Hi Khoshnam,

I completely understand how you feel. First of, let me assure you, that only because the things below happen to me does not mean you will have the same experiences, everybody is different, but I hope this might help you figuring out what might work best for you. ***Warning, a long story is following*** LOL

When I was first diagnosed in 2002, at age 30, I was in complete denial. Why? Well, after my very first colonoscopy I had no more issues, so I thought that the doc was mistaken (he had no bedside manners either LOL) and ignored the results. about 6 months after that everything came crashing down on me; symptoms after symptoms with pain and lots of it. On top of that, English is my second language, as if I didn’t have enough worries already. Thankfully my husband was at my side with every doc visit I wen to and every surgery I had to go through… I literally owe him my life. Anyhow, with time and patience (including frustration) my doc and I started from them bottom up figuring out what works and what doesn’t.

While she told me what meds to take: starting with Prednisone, Entocort, Asacol, various antibiotics, to Pentassa, Remicade and then my first surgery (I wished I would have done this much sooner). Surgery was another issue by itself. If you ever have to go that rout, make sure you research the doc really well. Only because they are “specializing in Crohn’s” doesn’t mean that they are a specialist in surgery. After the surgery I started taking Imuran and I was doing “well”.

Now I had to figure out how to deal with this new life of mine. I had to learn where all the bathrooms are wherever I went and what foods would make me feel worse. Most of all, I had to learn how to not stress myself out and the best way to handle that was for me to talk openly about my disease. Pretty much anyone knows of my disease but only a few know more of the details than others. I feel if the people around you are educated about the condition the less you have to feel embarrassed or worry.

I admit, it was not easy for many years. Lots of worrying and frustration until I started to get angry at the disease. But one day I simply “had enough” and decided that this disease will not dictate my life. I started a food and symptom diary to figure out patterns. I tried variety’s of OTC meds for the symptoms that could not be managed with the RX…. I have learned when to take the Imodium and when to use the Miralx. In 2015 I had my 2nd surgery (small bowl obstruction). I recovered quickly and added Beano and IBGard for the gassy symptoms and the occasional Bentyl for the cramping.

Then 2016/2017 came around the corner. By then I was convinced that I had things like stress and anxiety pretty well under control “a new life with Crohn’s” but then suddenly my stress level went through the roof. Partly because of work but mainly because of multiple family member died in short succession and the latest at the time pushed me over the edge with my anxiety. Next thing I know I ended in the hospital. In for 2 weeks, out for 2 weeks and repeat 2 more times after that. Eventually I had my 3rd surgery, had my medication changed to Humira and needed to get for the following 6 months iron infusion because I had severe anemia caused by the Imuran.

Since May 2017 I have been on Humira and have never been healthier until April 2023 that is. I am starting to have symptoms starting to flare up, but I am hoping they are only flares and nothing more. Let me safe you the math… I am now in my 50’s but my anger against this disease will not let me waiver from my determination of living MY life the way I want.

To deal with the stress, worries and anxiety you need to find ways to express yourself, try different things, reading, writing, meditation, painting, drawing, fitness, yoga, long walks… it does not matter what it is as long as it makes you happy and calms you down. I always try to live by “If I don’t mind, it doesn’t matter”

With that said, this has been enough rambling but I truly hope it will give you ideas to decide what your next step will be…. and always let your doctor know what is going on with you! If you do not feel comfortable doing that or he/she will not give you the time it is time to find a new doctor.
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