Your take..

[minky]

Hi all, am just after joining this forum. I got diagnosed with crohns 3 weeks ago. My story is that it all started 4 years ago, was getting constant diahorrea and was really ill. 7 m later I got my gallbladder out as it was inflamed and had stones. Thought this was the end of it. Symptoms of diahorrea kept up and I had a colonoscopy - diagnosing IBS - diahorrea version. Then I got pregnant and had a lil girl last year and things got a way worse after having her. The v min she was born I was back to my ususal symptoms. So still with the same doc, going down ever 6-8 weeks for something to help the flare as I was due back to work after mat leave in July. Kept saying just take anit-diarohhea meds if u ahve to go out etc. I wasnt happy so changed docs and within 3 monthis of being with her I have been diagnosed with crohns mainly in the small bowel and a bit in the large. I started pentasa granuales 3 times daily and also protium 40 as I was having stomach probs on it. Now I am having serious muscle/chest pain the past few day and am also getting over a bad cold. Was at the doc this morn and said it oculd be the pentasa so awaiting a ph call - have any of ye had thsi?? I am anemiac as well so started iron now as well every few days adn the doc has signed me off work for a month to get the treatment right and build up some energy. Work are not too happy as I have missed loads of time already and am only back since July following maternity leave. But what can I do. I genuinely dont have the energy to work. Looking forward to chatting to you all over time. Thanks for any views/opinions offered to me or any words of wisdom.

 

[Guest]

hi Minky & welcome. congrats on your new baby girl!

i'm so glad you're with a good doctor now, sounds like she's really on the ball with getting things diagnosed, and looking after you! i've never had Pentasa so i can't comment on side effects, but i have had Protium. you're only the 2nd person in the world i've met who's been on Protium lol. they were fantastic for me.. when i was prescribed them for the first time i had such acute pain every time i swallowed, which stabbed through from my oesophagus to my back.. within days the Protium calmed it all down and i could eat again.

and i commiserate on the fatigue.. it's horrid.

anyway, i hope you get to feeling better soon - the iron should help. looking forward to seeing you around the forum

 

[Crohn's 35]

HI Minky, Pentasa is a mild drug for Crohns, you maybe in a moderate stage. I have always thought for Crohns to be hormonal as being pregnant most times the symptoms go away. You have your hands full with a young child and suffering. Get your B12 levels checked out, lacking it may make you tired too. Part of the disease as well. Hope you get relief soon and welcome!

 

[teeny5]

Welcome to the forum. Don't worry about your work. Taking care of yourself is what is most important. I am pretty close with my bosses so I had explained to them everything that I was going through...this helped them to understand and accept why I had to take time off. I looked pretty bad though when I went out. I think they thought I was going to collapse or something. If you don't feel comfortable telling them all about your situation just keep them posted. Sometimes that is enough so they don't feel like you blew them off. I think a good company/boss will be understanding if they have a little info to work with.

Good luck with everything. If your meds are making you feel worse I would always look to having them changed. I have taken some meds from the same families of drugs even where one made me feel worse and the other felt fine. Hope you get your energy back soon.

 

[imisspopcorn]

Welcome Minky...Make sure you get those B12 levels checked like Jetta Lady suggested...It really can make a difference if you are anemic. I hope you start to feel better soon.

 

[Jennjenn]

Welcome I hope you feel better soon also

 

[Theresa]

Hi Minky, welcome, sorry to hear that you have been having such a hard time it really shit! pardon the pun when things are not great. But congratulations on your baby girl, I have three boys and would have loved a little girl! Like teeny says its important to think of yourself as worrying can also make things worse. I have had a lot of time off this year and for me in a sales related job with targets its been tough however my bosses have been fantastic. I had surgery in June and was off for 10 weeks, I also had had various short hospital stays but they have been really supportive. Its not good when you have to worry about bosses and work when all you really need to do is think about your health and being mum to your baby girl! I really hope you start to feel better soon. I have found the guys on here to be a great help and really supportive. Keep us posted on how you are doing x

 

[Guestly]

HI Minky, Welcome and congrats on your new arrival!

You are having a tough time, and what I have found is that it does take a while to get the meds right for you - I am still a work in progress! Follow the advice of the guys above - they have so much experience to share! (And of course your doc - who sound smuch better than the previous wate of space you were seeing).

I know what you mean about the job too - I only started my job in September and I am already off sick in hospital - I am sure they must be thinking I was a completely duff hire! The fatigue is terrible - I am seriously wondering whether I am going to be able to keep working, but then I haven't got my meds right yet, so perhaps need to be patient.

You have come to the right place - everyone here has been great to me, so get reading and ask all your questions - these guys are a generous bunch!

Lishyloo

 

[minky]

Hi all, thank you all so much for your kind replies. Am so glad I found this forum as thesre is not much support groups where I am from so its great to find an active one. Dingbat - LOL about the protium - we are so special to be on those LOL. About the B12, I got my bloods taken on Monday there now so will know more in a few days about the iron etc. I am taking iron now every few days but find it kinda hard on my stomach. Do any of ye suffer with like canker sores on yer tongues? I get these and my throat is sore for months as well, just cant seem to shake things and am catching everything going at the min. I was at the doc yet again on Monday as I have been experienceing severe muscle pain across my chest and out my back and its when I move etc. I taut it might be a side effect of the pentasa but she said its not so keep taking them but if the pains get worse to go to A&E for an x ray. My blood pressure and heart is fine as they did an ECG. I swear I feel about 80 - my gran of 91 puts me to shame as the energy she has is unreal and I am only 29 :smile: I suppose I am still trying to get my head around this all and have a few skeletons over it to be honest. I am going to be open here and tell you as I want to get better and 2010 I am focused is going to be my year. Well here goes - I suffer panic and anxiety driving! It all stemmed from getting cut short - sorry tmi and having to stop at the side fo the road for urgent stop. I cant drive to town and dont even mention city to me. I am after doing a great job of disguising this over the past 3 years so people dont really know about it. I do drive, I live in the country and have no prob on country roads as I suppose I feel if I had to go welll then I could but if in town what would you do as when you have to go you have to go now and I dont want to keep living like this. If I was stopped at traffic lights, road works etc I start to panic. I will not go driving with anyone else in case I need to go urgent and will only travel with dh. Its sounds so pathetic writing this down but if anyone has been in this situation and has any words of wisdom - please do share I dont have the runs all the time tg and I sympathise dearly with those of you that do. I get a flare and then it takes a while for my confidence to build back and then I am back to square one again then with the flare. Work is a nightmare as I worry after everything I eat whether or not it will agree. I am after doing a york food intollerance test recently so awaiting the results. Sorry for the long ramble and thanks for reading if you are after making it this far with my waffle. Tanx

 

[minky]

Anyone any suggestions for me :smile:

 

[Pirate]

Hi minky. We have all been in the situation about driving and THE URGE. I was pretty worried when first Diagnosed and would only go places that I knew where bathrooms were on the way. Over time you pretty much learn to read the signs your body is sending you and can compensate for it. Anxiety and depression go hand in hand with CD pretty much. What really helps is a great support team or person that learns to read the signs also. My wife is my rock cause we have dealt with this since day one. She can read me like a book and has learned over the years to take matters into her own hands. (I have a tendency to play it down when I should be seeing the GI or in the ER) She has went as far as goning behind my back and calling the GI or ER to get results.
You will learn to not be quite as embaressed about the CD with others. It takes time, but you do learn to live with it. You will have your bad days when you feel sorry for your self but you really have to learn to control those days and tell yourself that you will not let CD control you.
Good luck with everything and listen to your Dr. and ask lots of questions.

 

[minky]

Thanks for that Pirate. Your wife sounds brilliant with it all. Thanks for all the advice and am just saying to myself that 2010 is going to be my year to get things under control.

 

[lorberg]

Does anybody knows about Crohn's support group on Staten Island NY or Brooklyn?