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Crohn's Disease
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Posted 7/11/2017 9:58 PM (GMT 0)
I'm a 39 year old male who until recently never had any major health issues and rarely saw a doctor until now.

I was diagnosed with what I was told was mild Crohn's disease about 3 weeks ago due to what my doctor described as mild inflammation in my terminal ileum, ileocecal valve, and ascending colon. He discovered this via colonoscopy. I had gotten the colonoscopy as a precaution because I was experiencing intermittent bright red blood on the tissue after I wiped after a bowel movement. I was also experiencing mild tenderness in my abdomen. Not a specific spot. It felt like tenderness all over. And every once in a while. Maybe once a month or something I'd feel a sharp pain in my abdomen somewhere that only lasted a second and felt like I had been poked with a pin. I was 99% sure it was a hemorrhoid or something causing the blood.

I was told I likely had Crohn's literally like 2 minutes after regaining consciousness. I had never even heard the word before. They then hand me a brochure called, "Living with Crohn's", write me a prescription for Endocort and usher me out of the place and back into the world to live with my new reality.

Without going into specifics I'll just say that I wasn't happy with my GI. I felt he was very short with me, he didn't listen to my concerns, and he was impatient with my questions so I put in for a transfer to a new GI. Problem is this new GI has no open appointments for 5 weeks. Meanwhile I'm on my own with my disease and my prescription of Endocort.

I've been on Endocort for 3 weeks now. Before the colonoscopy and Endocort I had some bleeding and mild discomfort. Now after 3 weeks I am having to force myself to eat. I never get hungry. I also have spells where I feel hazy and have clamy skin and cold sweats. I have fatigure throughout the day. And I have frequent feelings of being bloated and having pressure in my stomach. It did seem to stop the bleeding though.

It's becoming hard to concentrate at work because of all these fatigue symptoms and I've felt like a black cloud has come over my life ever since I got this diagnosis. All I do is think about Crohn's it feels like most of the day. I have doubts about this drug both continuing with it and stopping it. I'm frustrated that I can't get attention from the new GI sooner. I would give anything to get my appetite back and return to some sort of normalcy in my life. I hope this is not the new normal.

Can anyone offer advice or empathy or anything?

Post Edited (VernalFalls) : 7/11/2017 4:08:44 PM (GMT-6)

Posted 7/11/2017 11:31 PM (GMT 0)
Nothing will happen if you stop the Entocort, so try stopping it for a few days and see if your appetite and energy returns. (Note: You would not want to do the same thing with prednisone, a systemic steroid that must always be tapered off if you've been on it for longer than a few days.)

You almost certainly did the right thing in transferring GIs. Your introduction to Crohn's sounds quite similar to mine, only I stayed with the same GI/hospital for 5 years: it didn't get any better. That said, you are between a rock and a hard place with mild Crohn's. The mild meds (e.g. mesalazine) are too mild and hardly better than a placebo for Crohn's. But stronger meds may be overkill and can have side-effects. The main problem is, there is no way of telling which way your Crohn's is going to go from here. It could stay permanently mild or it could get worse. That sounds pretty obvious, perhaps, but there is no way of telling in advance how mild or early Crohn's will progress in people. Mine was as mild as mild could be at the beginning (with correspondingly mild symptoms to match), but then it got worse: much much worse.

There is a decent case to be made for taking nothing in mild Crohn's, but monitoring it regularly to make sure it isn't getting any worse. Going on a mesalazine like Pentasa is highly unlikely to do you any harm: but it is not likely to do you much good either.

Talk about it with your new GI when you see him. I hope he's better.
Posted 7/11/2017 11:46 PM (GMT 0)
Thanks for the replay, NiceCupOfTea. After I told my dad about this diagnosis he told me that the "doctors think he has Crohn's also". I had no idea as he had never said anything about this to me my entire life. When I was maybe like 5 or 6 years old I remember he had surgery and I asked him about that and they said he had a problem with his ileocecal valve and had to have it removed or something. I think he's been on Pentasa and has had little to no issues with Crohn's. He had his surgery 30-some years ago. He said crohn's has had little to no effect on his life. I'm hoping my experience will be similar as far as mild to no symptoms for 30 years but I know it's no guarantee.

And yes, I have been having a really hard time deciding what I might want to do when/if I finish out this prescription of Entocort. My old GI said he wanted to put me on Humira. But reading about that drug seemed almost like way overkill. But if this bloating and loss of appetite continue much longer I might have to rethink that.
Posted 7/11/2017 11:58 PM (GMT 0)
I'd also like to mention one more thing about this. I feel like this all was triggered with an antibiotic I took. I had a sinus infection at the beginning of the year that I couldn't kick. My primary care doctor put me on Augmentin for a week. Immediately after I started that I had horrible watery diarrhea many times a day. I had no fear or suspicion of GI problems back then so I figured I'd just deal with the diarrhea for a week as long as it got me over this sickness. I wish to God that I didn't make that stupid decision now. Anyway, I finished the prescription and the watery diarrhea stopped after a few days but it didn't return to normal for a several weeks. And the first time I saw blood on the toilet paper was a couple of weeks after I stopped the antibiotic. My primary care physician prescribed me Protofoam for it and it would come and go. And this was the bleeding that brought me to do the colonoscopy in the first place.

Researching this issue took me to webpages describing C-Diff and said that this was most often brought on by anti-biotics. They said it was sometimes diagnosed as Crohn's and that coticosoroids can make the situation worse in this case. I read this over the first weekend I was diagnosed and decided to stop the Entocort over the weekend until I could talk to the GI. He took a couple of business days to finally get back to my inquiry and then scolded me over the phone for daring to think of this foolish notion and told me to get back on my drug.

Anyway, to this day no one has ever tested me for this. I probably don't have it since I don't have diarrhea right now but there is still a seed of doubt in my mind. If it wasn't C-Diff then I feel at the very least that the antibiotic must have triggered a crohn's flare.
Posted 7/12/2017 3:59 AM (GMT 0)
Antibiotics are known to be a risk factor for either triggering the start of IBD or for triggering a flare. Sometimes we have little/no choice but to take them, but in general avoid them whenever possible.

c.diff is possible after antibiotics, and people with Crohn's are a little more susceptible to getting c.diff. It's not unreasonable to check for it any time you have a significant increase in symptoms or when treatments aren't working.

I agree with all of NCOT's post.
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