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I am new to Crohns and scared

Hi,

As per the title, I am relatively new to the reality of living with Crohns, and am petrified.

I really hope that putting my story out here will help me so here goes…

I have since about the age of 18 had violent bouts of diarrhoea , usually after drinking but never really thought much about it. My mom has ulcerative colitis and always figured I would know if it had progressed to that and just carried on as per usual without much further thought.

About 2 years ago while in Nepal I contracted Amoebic Dysentery which seemed to take a really long time to recover from, but ultimately the symptoms eventually went away after 3 different long courses of anti-biotics.
At the end of last year, I was enjoying a break in Amsterdam and had my 1st real run-in with Crohns (not that I knew it at the time). It was 2 weeks of pain, diarrhoea and generally feeling horrible. Unfortunately due to it being Christmas, doctors were scarce and I thought I had just eaten something bad so didn’t pursue it.
On getting back I went to the doctor who treated me for the dysentery, thinking another dose of anti-biotics were on the way.
Little did I know that a barrage of tests, horrible cleansing solutions and unfortunate scopes were ahead!

I was diagnosed with Crohns shortly after. They were not able to do a test whereby I swallow a camera which travels the length of the small intestine (damn insurance) but based on all the other findings, he decided it was crohns.

I was put on 4g of Pentasa a day along with Pentax for heartburn.

I paid very little attention and continued my life as usual. All was well.

Recently however I moved back to my home country and I now realise I have a disease. On the flight I started getting cramps and realised I was having an attack. I had nothing but the Pentasa (which I had not been taking regularly) and had to sit through a 12 hour flight…
I got back to a new job, had to leave after a couple of hours and go to my old GP, who has very little exposure to Crohns and gave me a big injection of cortisone and referred me to a gastro nearby.
Still I didn’t really pay attention, drinking with my old friends, eating what I wanted and just taking cortisone whenever I felt anything untoward in my bowls.

About 2 months ago I decided to begin the process of looking after myself. I got back into gym, went up the mountain every weekend, started taking CLA (I heard it helped Crohns) and thought I would beat this thing the natural way.
Unfortunately this all came to a grinding halt last week, and hence why I am scared. I thought living a healthy life would be the fix, but even living a really healthy life (apart from moderate alcohol and weed usage) seems not to have helped.

It was without a doubt the worst I have felt since having a burst appendix. I am now on Pentasa, 16mg of Medrol and meds for the heartburn.

I am an otherwise healthy 28 year old male, I am in a loving relationship, I don’t have any real money worries, apart from Crohns my life is as close to perfect as anyone could wish for. The problem is, I feel absolutely powerless. Also, I think this Medrol is making me go insane…

If you read through, thank you for using your precious time. Just writing this makes me realise how stupid I have been and need to make real changes in my life to help myself, but if you have even a word of encouragement, your words will be appreciated here.
 

valleysangel92

Moderator
Staff member
Hello, welcome to the forum.

Crohns is a hard condition to come to terms with, and sometimes it is easier to stick our heads in the sand and pretend its not real, especially if the symptoms come and go with months in between where we feel fine. Unfortunately though it doesn't just go away and the longer we leave it the worse it gets. I'm really glad you now feel able to face up to your disease and you are starting to accept it. You aren't the first person to ignore it and hope it goes away and you won't be the last either..

When was the last time you saw a GI? Pentasa is one of the mildest drugs used for IBD and many patients find that its not enough to bring symptoms under control. Steroids are good for treating inflammation and bringing a flare under control in the short term, but they shouldn't be used as a regular, long term medication, they are powerful drugs with potentially serious side effects and you don't want to end up dependent on them. Also, the longer you take them, the less affect they will have in the future, so if you get another flare and get steroids again they will take longer to have an affect.

Have you ever spoken to your GI about biologics or immuno-suppressants? http://www.crohnsandcolitis.org.uk/Resources/CrohnsAndColitisUK/Documents/Publications/Booklets/Drugs Used in IBD.pdf This is some information about some of the drugs available in IBD.

What are your current symptoms? If you're experiencing cramping or other pain, heat packs or hot water bottles and long, hot baths can be very beneficial. Stay away from NSAIDs such as ibprophen as these can cause ulcers and encourage bleeding in the digestive tract.

Some people find that a "healthy" diet full of fruit and veg actually makes the crohns flare up more. Try keeping a diary of what you eat and drink and the symptoms you experience so that you can see any relationship between what you're eating and the symptoms you experience. If you do find that fruit and veg make your symptoms more severe, you could try juicing them, this makes them easier to digest as it breaks down the fiber and a lot of people find it far more tolerable.

Don't beat yourself up about the past, everyone makes mistakes, the important thing to do is learn from them. Ask questions, do your research (be careful with this, the internet is full of negative stories, reliable sites like www.patient.co.uk are the best to use). If you come across anything you don't understand or that scares or worries you then come and talk to us, we are all here to offer advice and support whenever we can.
 
Thank you so much for your response, it is amazing to be able to talk to people who have been in the same position as me!

Last time I saw a GI was about 6 months ago, and due to no symptoms at the time it was decided I should continue on Pentasa. I am waiting on my new insurance to come through and will then get a GI here.

The Medrol is for a month (1 week of 16mg and then decreasing from there) - I will speak to the doc about making this less.

With regards to food, for me it seems I am intolerant of fatty meats rather than veggies. If I eat pork ribs, I will without fail be sitting close to a toilet the next day...

I guess I am pretty lucky with food, most things seems to be tolerated well, but I definitely will start a food diary and see what I find.

Thanks again for your response, it means the world to me!
 

valleysangel92

Moderator
Staff member
Thats what makes this place so great :) its a shame you didnt find us sooner! We are all in similar positions and understand what a horrible condition it can be.

6 months is quite a long time if your having symptoms, so definitely get that new appointment as soon as you can.

What are your symptoms like at the moment?

A month isn't too bad, there are many people on here that have had steroids longer, just make sure you aren't just left with those and not given anything you can use more long term.

With regard to meat, most people find that lean, tender meat is a lot easier to eat, make sure things like beef or pork are well cooked and you should find them easier to digest.
 
Julian,
Did you ever try juicing? You get all the benefits and nutrition without any of the fiber which causes crohnnie's to flare up. Many on this forum do.:) Good luck to you and realize sometimes it had nothing to do with why we got crohn's. It wasn't your partying!!! Even though partying can make it worse:((alcohol).But many get great relief usind cannibanoids for stomach pain and even acheived remission through using cannibis a few times a day. Look at the Medical Marijuana thread on this forum.
 
So no steak tartar?? I was told there would be steak tartar! ;)

Agreed on the need for a GI visit, insurance is taking their sweet time due to the Crohns... Holding thumbs its all sorted out this week!

Symptoms are still not perfect - abdominal pain and loose stool but I think the worst of it is down to the steroids. Spacey head, trouble thinking clearly, etc. Hoping that decreasing the dose soon will help.
 

valleysangel92

Moderator
Staff member
Maybe if you're good haha

I hope its sorted soon.. if you do have problems with insurance there is a support group for uninsured members http://www.crohnsforum.com/showthread.php?t=49965 they'll be able to give you some advice on what to do.

It may be partly the steroids, unfortunately some find the side effects will not go until they have been completely stopped, make sure you do taper them slowly though.
 
Julian,
Did you ever try juicing? You get all the benefits and nutrition without any of the fiber which causes crohnnie's to flare up. Many on this forum do.:) Good luck to you and realize sometimes it had nothing to do with why we got crohn's. It wasn't your partying!!! Even though partying can make it worse:((alcohol).But many get great relief usind cannibanoids for stomach pain and even acheived remission through using cannibis a few times a day. Look at the Medical Marijuana thread on this forum.
Thanks for the ideas, I tried a joint last week when I just couldnt face eating, with a great side effect of helping with the pain.

Will look into the juicing but the weed side makes me a bit stupid and I cant afford that with my job...
 

valleysangel92

Moderator
Staff member
Stop beating yourself up about it.. in terms of your crohns, it doesn't make you stupid, as 723crossroads was saying, weed can actually provide relief for some crohns patients, even when medications cant. Here we are open minded and non judgemental. You didnt cause this, none of us ask for this stinky (sometimes literally) disease.
 

Tesscorm

Moderator
Staff member
Hey Julian,

Sorry you've had to deal with this but glad you've found this forum!! The information and support from the members have been invaluable to me. :) I don't have crohns but my son was diagnosed at 16 (he's 19 now).

You've already been given some great advice :)... try to get some info on enteral nutrition (EN). It's a liquid diet (special formulas) that can provide all necessary nutrition, allows for bowel rest, have healing properties and are anti-inflammatory. It's commonly used around the world (altho not as often in the U.S.) for kids as their first treatment but certainly has benefits for adults as well. Not sure of the stats for adults but, for children, it can be as successful at inducing remission as steroids. This was my son's treatment and he did very well with it. (Also, no side effects! :thumright:) Even if not used to induce remission, something to keep in mind during times when you're not well and are having a tougher time with food...

Also, re the immunosuppressants and biologics - many of these maintenance meds need some time to reach therapeutic levels. Often they are started together with steroids or EN so that they may reach therapeutic levels once you're done with the steroids/EN.

Pentasa is one of a number of 5-ASA meds. It is one of the mildest meds and some do very well with them, however, many find it is not enough to maintain remission.

Have a look through the various treatment subforums for more info.

In going through the forum, I'm sure you'll realize the symptoms, treatments and diet are very individual with Crohns. A food diary is a good idea. So far, my son has had no issues with any food. However, at our dietitien's suggestion, he does avoid seeds and pieces of nuts (ie smooth peanut butter is fine).

Many here also take supplements - my son takes krill oil (anti-inflammatory) and vitamin D. Turmeric is another commonly used anti-inflammatory supplement. As inflammation in the small bowel can inhibit absorption, you may also want to ask your doctor to check vitamin/mineral levels. Please look through the Diet, Fitness, etc. subforum and also on the forum wiki for more info.

I hope you're able to get into your GI soon and onto a successful treatment plan!! Good luck! :)
 
Hey guys, thanks so much for all the words of support and help.

Unfortunately my crohns flair got a lot worse when I started reducing my medrol (cortisone). Spent a week in hospital on IV steroids and IV liquids. All I have to say is thank god for the nurses.

I had spent two days going to the loo approximately 40 times when my doc realised there was no way we were going to fix this out of hospital.

I have now been on medrol for close to two months and am finally down to 8mg a day but the pain is back. Fortunately no running to the toilet though.

I phoned my gastro (who I saw last week and will be having another scope as he wasnt happy with the one done by my previous doc) and I think he may suspect my pain is psychosomatic. Has anyone else had this experience? The pain is exactly where it was previously but without the runny tummy.

I am having horrible side effects from the steroids (my whole back and neck is covered in pimples, dry skin, completely manic) but am scared that going off them completely is going to start a whole new flair. I am a big, strong man but all I feel like doing is crying in the corner...
 
Julian
So sorry you are having such a tough time. Tapering off steroids can be very difficult and slow (and at times, not even possible). I truly hope you wrong about your GI thinking it is psychosomatic! If so, find a new GI.
Clearly you are in the midst of a tough stretch, it is enough to cause anyone depression and stress. But hang in there. Keep us posted.
 

PsychoJane

Moderator
Hi Julian,
Sorry to hear you are going through this rough time. I hope the scope will allow you to have the proper needed treatment. It is rather rare that the pain is only psychological. You can have pain without diarrhea. One does not exclude the other.

I know that getting off steroid has been an impossible challenge for me. Have you been put on any other medication than the pentasa and steroids since your condition has worsen?

Hopefully everything will improve shortly. Stay strong!
 
Thanks so much for the support, hopefully I can pay it forward soon!

Today is my first day without Medrol, getting weird stomach pains but nothing unbearable. Almost like heartburn but more?

Really looking forward to not having acne on my back anymore! Weird how this whole thing has been such a roller-coaster. Feeling positive, and in a way am looking forward to the scope on Tuesday - hopeful that the healing can begin from that point. :)

I am spoilt with support, thank you to the individuals who take the time (whether on the internet or away from the keyboard).

Best of luck with each of your journeys
 
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