Crohn's Disease Forum » Your Story » The beginning..


02-23-2018, 04:33 PM   #1
Hollyfergusonx
 
Join Date: Feb 2018
The beginning..

Iím newly diagnosed with Crohns (November 2017).
Iíve not really gone into remission I was having diarrhea since Feb 17 slight belly pains and going to the toilet 4/5 sometimes more in the night. It made me very sad and upset I started to get piles and was in extreme pain it made me very Ďdepressedí my doctor kept telling me it was just ibs until I asked to see another doctor and was referred to hospital for the camera both ways! :-| I was then told it looks like Crohnís and was put on the horrible prednisone. I LOVED it at first it made me happy and gave my my appetite back I could eat anything and everything I was taking 40mg a day and reduced the dose by 5mg every 7 days. As I got down to taking 30mg a day I was going back to myself I lost my appetite and was going to the toilet quite often again. My skin became very oily and finally Iíd finished the Pred. All of the sudden my skin was horrible lots of open pores white head and blackheads along with under the skin bumps which are extremely painful. My skin before this was so so clear and healthy Iíd never had any issues, I started to become very very dehydrated and this was making my skin worse. Lost so much confidence what makes it worse is Iím a makeup artist and I just felt awful!!!

I did some searching and decided to try acnecide which dries out the skin it worked very well and Iím nearly at the end of my first tube and my skins better I have no spots however my skin tone is quite uneven and lots of redness/inflammation.

I deal with Crohnís by pretending itís not there I donít like talking about it and when I do I just get upset. This is normal to me now Iíve not been to the toilet normally for a whole year so itís just like Iím used to it.. I donít get very bad stomach pains it just wakes me up in the night and sometimes I just loose out on sleep but this is normal for me now! I have my days where I feel so rubbish and just want to cry but as it goes on I learn to cope!

Iím now taking Pentasa 2 tablets 2 times a day. Iíve rcently had my bloods and they say Iím still very badly inflamed and will probably need more treatment. Iím also thinking about taking cbd oil to see if it will calm it down.

If thereís anything I hate the most itís what Crohnís has done to my skin Iím wondering will it ever go back to normal and will I be confident in my own skin again I finished Pred in December and I know it came from that.. I know acnecide wonít work forever.

I know this all seems so messy but I just wanted to write ))
02-23-2018, 04:53 PM   #2
ronroush7
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Welcome. Pentasa is not a strong medicine. Your doctor is right. You will probably need something stronger. I would probably see a dermatologist about your skin.
02-24-2018, 04:18 AM   #3
Hollyfergusonx
 
Join Date: Feb 2018
Iíve read online and not many people say pentasa works for them so Iím not expecting anything but Iím worried because Iím so badly inflamed I donít want it to lead to other bad things Iím wondering when theyíll decide to switch up my meds. Iím only 20 Iíve got a long way to go!! Iím looking into taking cbd oil atm heard good things...
02-24-2018, 11:48 AM   #4
ronroush7
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There is a section in here called Treatment. Underneath that is a subsection called Medical Marijuana. You might want to check it out.
02-26-2018, 07:46 AM   #5
valleysangel92
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Hello, welcome to the forum

I'm so sorry to read about what you've been going through, I can really relate to how you're feeling, I was diagnosed at 19 after being unwell for almost 5 years and initially it was all a bit over whelming. It's normal to feel like you don't want to acknowledge whats going on and to loose your confidence, but this isn't the end of your life, you can live a good, happy life with this illness, its not all roses but you do learn ways of enjoying the good days.

The skin issues could well be from the pred, and if so will resolve in time, but they could also be caused by nutrient deficiencies, so it would be worth asking for a blood test to see if you have low levels of vitamins or minerals like iron or vitamin D.

Pentasa is very often the first treatment the doctors will try as its very safe and has the least side effects or long term safety concerns, its very mild and so doesn't work for every one, but it also takes a few months to properly build up in your body, so it might be that your doctors just wait another couple of weeks to see what happens.

If this doesnt work, there are lots of other treatments available, there are immune suppressants live azathioprine or mercaptopurine which aim to lower your immune system and stop it causing the damage, these can be used along with pentasa or instead of it. The other option is biologics like infliximab or humira, which are aimed at specific parts of the immune system and again aim to stop the damage occuring. These carry a little more risk than the other medications but they are still very safe and carry good success rates, so it might be worth having an open and honest chat with your doctor and seeing what they think your next option would be.

I know you said you don't like talking about your illness, but I think its important you don't try to deal with all of this alone, so please come to the forum whenever you need some support, we're all in the same boat and we've all been through that early stage of not knowing what to think or where to turn, so there's no judgement or need for embarrassment here.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
02-28-2018, 05:48 PM   #6
Hollyfergusonx
 
Join Date: Feb 2018
I know I can be happy I have been for quite a while which is good. These past few days Iíve been feeling quite rubbish though my stomach pains are different they seem to Ďstingí I donít know if thatís the right way to describe it but thatís what it feels like. Iíve been feeling very stressed and worked up maybe this could be causing it?

I am anaemic I have been for around 2 1/2 years or something now they gave me ferrous sulfate to take 3 times a day. I then started to just buy multivitamins + iron from boots probably not as good but makes me feel better. I never thought about me not getting enough nutrients could be giving me spots, I do think me not being able to drink enough water and being very dehydrated will take part in this though.

I will have a look at these treatments and the side effects and reviews then I will know about them if my doctor considers them.

I think I feel more comfortable talking on here to people in the same boat sometimes itís hard talking to someone who doesnít know how it feels and they always think they know whatís best for you!

Thanks!
02-28-2018, 05:49 PM   #7
Hollyfergusonx
 
Join Date: Feb 2018
There is a section in here called Treatment. Underneath that is a subsection called Medical Marijuana. You might want to check it out.
I will take a look see what people are saying thanks
02-28-2018, 06:00 PM   #8
Guerrero
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Hi welcome on the forum,
I was diagnosed at 16 yrs old, the few months after the diagnosis were the worst for me.
See the good part on switching drug, that could lead to find the right treatment for you and feel better soon.
Don't hesitate to ask questions. I was scared by treatments at the begining too, now i'm not as they are not as scary as described on internet and they help me to lead a normal life.
03-01-2018, 03:02 PM   #9
Hollyfergusonx
 
Join Date: Feb 2018
I am quite nervous about treatments I think itís more the side effects like the side effects of Pred was so bad and Iíd hate to ever have to take anything so bad again

The doctor I seen also mentioned to me I might have to have surgery at one point and that scared me :| Iíd hate it I know itís to make me better but the thoughts just scary!
03-01-2018, 05:17 PM   #10
ronroush7
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We are all here for support. Try not to sorry
03-01-2018, 11:43 PM   #11
Maya142
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Hi and welcome! I don't have Crohn's, but my 21 year old daughter has Crohn's and inflammatory arthritis and my 24 year old daughter has inflammatory arthritis.

First off, I want to say that MOST drugs are NOT at all like Prednisone. Pred is the drug we love and hate - we love that it works so well, but hate that it comes with so many side effects! Acne is definitely a prednisone side effect but it should've cleared up when you stopped it. But it may be that the skin issues will go away when you have gotten your Crohn's under control.

As for medications, Pentasa only works on the surface layer of the intestine. In Crohn's, all layers of the intestine get inflamed - it's called "transmural inflammation." Some GIs say giving Pentasa for Crohn's is like giving aspirin for a brain tumor. It will not hurt, but it's not going to do much.

The next step would be immunosuppressants like Azathioprine/6MP or Methotrexate. Azathioprine and 6MP are used a lot more in the UK than in the US. They are effective medications. You will be monitored very carefully to make sure you have no adverse effects. Common side effects are nausea, but that tends to go away with time. In the US, Azathioprine and 6MP are being used less since there is a slightly higher cancer risk with them. Methotrexate is being used much more.

Then after that, biologics are used. In the US, they are being used more and more - even for moderate cases. They are actually very safe drugs. They are also VERY effective. In the US they are used early in the disease to prevent complications down the line. In the UK, because of funding issues, I believe they are reserved for severe disease or if you have failed all immunosuppressants for whatever reason.

Both my daughter have been on biologics + an immunosuppressant for years (7-8 years). All through middle school, high school and college (university). We have not had any issues. They do not get more infections than their classmates.They are careful about washing their hands and staying away from sick people but don't really do anything else special.

The way I think of it is that Crohn's is very likely to cause complications like strictures (as scar tissue from long term inflammation that causes narrowing of the intestine), abscesses, fistulae. These can lead to obstructions, perforations, sepsis and even death. Untreated inflammation is also a risk factor for cancer.

So while the medications come with small risks which are unlikely to occur, complications from untreated Crohn's are VERY likely to occur. At some point, you realize the disease is much scarier than the meds.

This is a good presentation which explains the risks and benefits of IBD medications:
http://programs.rmei.com/CCFA139VL/

Good luck!!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
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