Recent Crohns Diagnosis, Acne, Panic Attacks.

Hi

I've recently been diagnosed with Crohns disease within the last month or so after a Colonoscopy and Capsule Endoscopy revealed ulcers within my small bowel. I thought I would join the forum and explain my story, and see if anyone is has a similar background to me regarding diagnosis etc.

I first began having bowel pain and various symptoms relating to IBS such as excess gas, abdominal pain and incomplete bowel evacuation around the age of 16/17 (I'm now 21). This was after taking various anti-biotics to try and combat my mild acne flare-ups. These, like many others will no doubt agree, were useless, in the fact that they didn't clear my skin, and i'm pretty sure upset my gut flora causing my IBS related symptoms. For the next couple of years I continued without any prescription drugs ( I apologise for this being centered around my skin but i'm confident the two are related somehow) having good and bad stages.

Last March, after a bad acne breakout around April time, I took the decision to go on Accutane to try and cure my skin symptoms once and for all. It worked straight away, and my face was clear well before finishing the course. Something I might add as-well, during the time I was on Accutane, i didn't suffer any bowel symptoms. I was regular, no excess gas, and no abdominal pain. As you might be able to guess, I was delighted as I thought I might have cured my 2 major health issues in one.

I began university last September and started well. My face was clear, and I noticed no major problems with my usual IBS related symptoms. Around Christmas time I started to get really bad abdominal pain, and found myself constipated the majority of time. I also got the idea that I was leaking excess gas, and this played a major part in my life socially and academically. It also got to a stage where it was perhaps psychological ( I was concentrating on people around me, and avoiding public areas whenever i could), and my symptoms got so bad, I couldn't face being at uni anymore so returned home for 3 weeks to seek help. This had a huge impact on my learning so unfortunately I failed my first year.

I'm now at the stage where my symptoms are improving, however still having an affect on my life. Only as early this morning I had a panic attack in a public speaking excerise for a job interview. Something that's never happened to me before. I made my excuses and rearranged the interview for another day.

So in terms of diet and supplements, I'm trying to cut out dairy, wheat, gluten, sugar etc but finding it very difficult due to how much, and how many foods contain them that you wouldn't expect. (Does it even help anyway?) I'm currently taking a strong multivitamin, a cod liver tablet, and 2 pro-biotics tablets daily. Only started these 3 supplements within the last week, so to make an assumption on there effect is too early.

So my questions really are does anyone have any similar story to tell, or any advice in particular that may be of use? I'm hoping to cure myself naturally, as Crohn's is not incurable (IMHO), I refuse to believe that there is no way of sorting the problem holistically. I'm scheduled to pick up a prescription later for Pentasa, my first crohns related prescription. Any advice on this drug? I'm unsure whether to take it, although I appreciate it may possibly help my symptoms, I just don't agree with pumping the body full of drugs to solve problems. This point of view is mainly taken on the basis that I feel accutane turned my IBS into IBD, and the Doctors irresponsible way of dishing Anti-biotics out like sweets, giving no advice on the effect of them and ensuring patients take a pro-biotics to replenish the good bacteria lost.

Apologies for the long winded message. Any suggestions or advice would be well appreciated, and please ask any questions If you feel I could be of any assistance to yourselves.

Thanks

Chris

Hi Chris and welcome! In my opinion, you need modern medicine to treat Crohn's disease. Many have tried to take a non-traditional route, and some have had success with supplements and diet. However, I have read several, several stories where people only progressed their disease, because they refused treatment.

Pentasa is a very mild medication. And if your doctor prescribed this, you most likely have a mild case of Crohn's. So, don't you want to be sure it stays that way?? But of course, only you can make the decision with which way you want to go.

Good luck, Chris!

Hi Jill

Thanks for a quick response. You've made a very good point in the fact that my case is mild for now, so I guess I should be thankful it's not a worst case scenario and keep it that way by taking action asap in order to avoid it developing further perhaps. Just picked up my prescription now, 6 tablets a day in 3 intervals, so I guess i'll give it a go. I suppose it won't do any harm continuing my supplements aswell as the meds.

Thanks again!

Chris

Hiya Chris
and welcome fellow Brit

I'm on Pentasa and have a mild case too!
But a word of warning from an old Crohnie!
I stopped taking my meds cos I was stupid and ended up in hospital last year with a blockage and it got infected, blah, blah, blah!
Do your body a favour, take your meds and see them as maintenance. Pentasa is very good for maintaining remission, see it as an aspirin, like an anti inflammatory.
Unfortunately this med won't touch the sides if your inflammation is out of control.
Good luck and lotsa luv
Joan xxx

cajones1990 said:

Hi Jill

Thanks for a quick response. You've made a very good point in the fact that my case is mild for now, so I guess I should be thankful it's not a worst case scenario and keep it that way by taking action asap in order to avoid it developing further perhaps. Just picked up my prescription now, 6 tablets a day in 3 intervals, so I guess i'll give it a go. I suppose it won't do any harm continuing my supplements aswell as the meds.

Thanks again!

Chris

Click to expand...

I am happy to read this, Chris. I think you made the right choice. And, as Joan said, Pentasa is very mild. So, it is certainly worth taking if it is going to keep you well! Good luck!

Hi Chris,
I have to agree with Jill. I tried diet and herbs etc. I think I got worse and ended up in the hospital. I had to come to the realization that I personally can't do it on diet alone, however I have read a lot of success stories so I think it can be done. I am just not that disciplined. Good luck and I hope you feel better soon :wink:

Hello!

My symptoms started at 15/16, so very close to you. I was diagnosed at that time with IBS as well, with no tests, just a doctor saying it wasn't bad enough to look into. Over time mine has gotten very severe, but I was never on accutane or many antibiotics. Maybe it just got worse with no treatment? I have heard that the link between the two hasn't been completely researched.

Either way I agree with the others, meds are probably the way to go! Since I am still not completely diagnosed I am not on any crohn's related medications, and it sucks. Over time my symptoms have gotten worse and worse, and I take probiotic, vitamins, and recently stopped eating much solid food (20 minutes after I eat it comes right back out...so I see almost no point). Its better to get it controlled now than have it get worse to where it can affect your life more!

Welcome to the forum!

Hi All

I just wanted to say thanks for the kind words and quick responses. I'm feeling quite optimistic about the future and the potential solution Pentasa may provide. I'm still going to take my numerous supplements like I said before, as I feel these do make a difference, for me anyway. A high quality vitamin I've been taking for the past few days has made a notable difference to my energy levels so I think i'm absorbing more nutrients than usual.

I just wanted to ask a few more questions if thats possible?

1) Does anyone suffer from light headedness and dizziness when standing up? I regularly get this, and It leaves me having to duck my head low for a few seconds to regain focus! Could be completely unrelated to crohns...

2) How long does Pentasa take to kick in? I've been given a months supply...which i'm susprised at, as I thought i'd be at least given a couple of months worth?

Anyway, thanks again for the support, and all the best with your individual cases.

Chris

(btw Astra101, i'm from Manchester, so only an hour away from yourself!)

Hiya Chris

I love Madchester!

Sorry I can't remember how long my Pentasa took to kick in, but it will eventually, like all meds, needs time to work.
There could be many reasons why you're dizzy, have you had your ears checked? A condition called labyrinthitis could cause this.
More common is low blood pressure, going without food for sometime and your blood sugar hits the deck.
Anaemia is another reason, have you had your bloods done, iron levels checked?
I have this sometimes and drink some Dioralyte, this boosts your electrolytes like potassium and sodium.
And last but not least, some meds can/may cause this too til you adjust.
Treatment depends on the cause, so see your GP for advice.
good luck
xxx

Hi there Chris, i seem to be quite dizzy and light headed when standing up to but wasn't sure if it was related to Crohns...guess the above post makes sense could be low iron etc.

I had my blood checked about a fortnight ago for various levels and it all came back clear. Funnily enough this blood test was regarding a strange sensation I have when relaxed in bed, a sensation of what feels like spiders crawling all over my body! Very strange...

It's hard to say whether either symptoms could be related to crohn's. One thing I will say is, I rarely go without food. In fact my appetite has increased, finding myself hungry more often than not, something which I believe contradicts a typical Crohn's diagnosis.

Chris