Hi, new member from Devon, UK

Crohn's Disease Forum

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legardored2

Joined
Apr 7, 2012
Messages
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Hi all. I am new here and wanted to share my story with you all.

I'm 22 years old, have a young son and live in Devon in the UK.

I have had tummy complaints on and off for many years but things became much worse in December 2010, about a month after having my son. As well as having chronic pain and loose stools I also started passing blood and mucus and was terrified I had cancer. I saw my doctor and was booked in for tests. In july last year I had a colonoscopy and later that night had to call an ambulance as the pain was unbearable. I was admitted to hospital with a suspected flare up of Chron's disease. After I was released it took another 8 months and various tests to get a proper diagnosis of Chron's disease and any treatment. I started treatment about 4 weeks ago and am currently taking Budesonide, iron tablets and Azathioprine. Apart from having to have blood tests every week (I have a fear of needles) things were going really well and after 8 months of continuous pain I was pain free for about 2 weeks.

Unfortunately at the beginning of this week I started to get pain in the top of my tummy and on Thursday ended up back in hospital (I was discharged today). Turns out that I have gastritis which they say is being caused by my steroids (Budesonide) so I now have to take a ppi called Omeprazole as well. I have to be honest at the moment I am struggling to come to terms with the Chron's disease and can't help thinking that the rest of life is going to consist of taking pills, being in pain and trips to hospital but I am hoping that with time this feeling will pass. I am also worried about my fertility and how the Chron's and drugs will affect that as my husband and I are trying for a second baby but are having no luck as of yet. Thank you for reading this and letting me share my story/vent to you all. I hope everyone is well. xxx
 
Hi there and welcome to the forum :) I'm really glad you joined. I'm sorry to hear that you're having a tough time, you poor thing.

Is the Omeprazole working for you? And do you take the iron pills on an empty or full stomach? I assume you were anemic thus the iron?

I know you're struggling right now but it CAN and will get better :) And there are plenty of women here with Crohn's Disease who have had happy, healthy babies.

I wish you all the best.
 
Hi Legardored2,

Welcome to the forum, it's the best place to be for support and info on Crohn's Disease! :) In my experience it is the first time you are diagnosed that generally is the worst. Because you are not being treated and things tend to escalate to the point where they can't be ignored.

I was in hospital for a month seriously ill when I was first diagnosed and then another month at home recovering. I've never had to repeat that since because I've been aware of what's going on and had constant check ups (and pills).
As David said, there are many women here with lovely, healthy children, just make sure you have good doctors who will see you whenever you need and they will walk you through it and keep checking everything's fine.

Oh, and Devon is beautiful :)
 
Hello and :welcome: to the forum, I agree that as you have gone so long without treatment that it can take a while for things to settle down. I too am on the Aza and have been for nearly 3 months and am doing well - fingers crossed that it will do a a good job for you, it just takes a while to get fully in your system. My doc has also confirmed that is is ok to be on this med whilst pregnant, I would not worry that you have not conceived yet - your body has been gong through a lot recently so it may just need some time to recover from this flare up.

I hope you can be feeling better soon.

AB
xx
 
Welcome!

I have three kids. After all my kids I had trouble with my Crohns. I was told this was typical. I was not diagnosed until after my second baby. By the time I had number three they were able to help my right away. My Dr was very helpful in calling drug companies to find the right combo so I could continue to nurse him.

Push for the knowledge you need and don't give up!

I hope you feel better soon!
 
Hi all. Thank you all so much for the lovely welcome and the reassurance about getting pregnant it really means a lot.
David, I'm not sure if the Omeprazole is working or not as I have only been on it for three days and I'm not sure how long it takes before it starts to work. If it is supposed to work instantly then I suspect it is not working as I am still in a lot of pain and relying heavily on pain relief a lot of the time. With regards to the iron tablets it varies as to if they are taken on a full stomach or not depending on if I'm in pain or not depends on if I have eaten. Is it better to take them on a full stomach?
 
Welcome it normal about week to two before you know if omeprazole is working. Irons tablets full stomach I was told with water or juice. Not tea as it not absorb the iron property.
 
Welcome to the forum. I had trouble with iron tablets, used to go down to 2 if feeling bad. Hope it goes well for you and you get in remission :)
 
The reason I asked about the iron is I wonder if that is what is causing your issues rather than the Budesonide. Many do poorly with oral iron, especially people with Crohn's Disease.

If you take iron on a full stomach, it often helps with the negative side effects. However, studies have shown that absorption is then reduced about 2/3 in most cases. Catch 22 :(
 
Hi and welcome! i know how you feel and ive also had the worry of fertility! i hope everything picks up for you!
We have family in exeter and torquay, Devons a lovely place!
xx
 
Hi all. David thank you for the advice on the iron tablets I will mention it to my doctor and see what she says as I do find they also make me quite constipated. Adele, thank you for your message of support. I'm not too far away from Torquay and Exeter, I live in a small town called Teignmouth, do you know it?

I saw my doctor today and she has prescribed me some Tramadol for pain relief as the hospital sent me home with nothing and I'm pain free this evening which is great even though I'm also away with the fairies a bit lol. My doctor is disappointed at the treatment I received in hospital because they didn't even notify my consultant and my doctor also thinks they should of done an endoscopy so she is going to contact my consultant and discuss with him the best way forward to deal with the Gastritis I have as that is what is causing my pain.

She has also given me strict instructions of bed rest, she said the worst possible thing I can do with Gastritis is move so I have been told to lie down and do nothing.

Obviously I will follow her instructions but I'm hoping it won't be too long before I'm better as at the moment it means I'm not well enough to care for and play with my young son and am relying heavily on my husband and other family members for child care.

Any way that is the latest from me. I hope you are all well. xxx
 
Hello, nice to meet you. I've had Crohns for almost 30 years. Been there and done that with virtually everything possible. I had gastritis on 2004, took a couple of months of taking ranitidine but it did clear it up. I've not been able to get pregnant, im 40 now and have tried for 10 years. It seems its been the surgeries that have complicated things for me not the meds. On a brighter note, i take aza and i've been in remission for 10 years now.
 
Tramadol is amazing for the first time in days I was pain free last night. Unfortunately I also vomited blood last night so it was yet another trip to my doctors today. Not much has changed she is just pushing the hospital to get me in for an endoscopy asap. My pain hasn't been so bad today so I'm hoping it is a sign I'm on the mend but not getting my hopes up too much as when I was discharged from hospital on Saturday I had no pain but Sunday it came back with a vengeance. Has any one else who has had gastritis found that the pain came and went?
 
Hi legadorded2.

I have not had gastritis so can't give you any advice on that.
Just wanted to welcome you to the forum.
I live in plymouth and have relatives in Teignmouth, Torquay/Newton Abbot. Its a lovely area and the beach is wonderful for walks.
Hope you get something sorted soon hun. If you keep on vomiting blood I would go toTorbay general a&e. Dont let that go on. My sister is one of the sisters at that hospital!

Xxxxxxxxxx
 
legardored, what are your thoughts about keeping an "iron journal". Write down when you take the iron each day, how you take the iron, and at what times of the day your gastritis is at its worst and what times it is at its best. I'm still suspicious of the iron. Actually, you may want to expand that to foods and your other medicines as well to see if you can find any correlations.
 
I have stopped taking the iron since I got the gastritis and to be honest I'm barely eating at the moment as well because of the pain it causes. My doctor is booking me in urgently for an endoscopy so hopefully I won't have to wait too long for that and then I should know more about whats going on. I'm really scared about it though :(
 
Ah, ok. I'm glad it wasn't the iron although that would have been an easy fix.

It's understandable that you're scared. Have you been through one before? It's not too bad, the anxiety leading up to it is the worst part :)
 
I've had a colonoscopy before but not an endoscopy. I'm scared because my experience with the colonoscopy wasn't great as it resulted in me being admitted to hospital. I know this might sound strange but the thought of having an endoscopy scares me much more than the colonoscopy. My doctor told me they don't sedate you as much with an endoscopy and I'm worried about not being able to breath and gagging.
 
To honest it daunting but I had one and other were I had swallow small device with wires. One whole day due having Acid Reflux test. Normal just closes eyes think of something calming and listen follow instructions. Good Luck.
 
Hi Leg,

welcome to the forum, a great place to be. i can't take iron to save my life. don't even try it. omg the stomach pains!!!! Fertility, my periods just vanished cos i weighed in at less than 6 stone!!! no babies for me either. never mind, have issues looking after myself and admire those people on here who look after family, have full time jobs, and full time crohns. Amazing bunch.

Word of advice, just tell the endoscopy team that you're worried you gonna have a nasty panic attack for them! they should knock you out for the fear of your unknown reaction. i always do it. but unfortunately i have issues with hyperactivity with sedative medications. they recommended that i have General Aneasthetic for future colonoscopy. Got tramadol for crohns pain but keeps me awake 22 hours of the day, and i have the altered mind state, and can still feel the pain. glad its working for you. but please don't take iron. oooohhh, you so remind me of the pain i suffered with iron tablets. thanks David for the crohns/iron link there, thought it might be just me, with no other human understanding.

Are you at Derriford? a few on this forum are. over and above your specialists, we luv you more than they do, okay.

Best Wishes
Diane
 
hi legardored2 i am also in devon! :D i had very bad time on tramadol and would never take it again but each to there own and we all tolerate drugs different. i am currently on oxycodone for pain releif, and today i am on the big clear out ready for yet another colonoscopy on monday :( .
i am also booked in for a bowel resection on the 3rd may and must admit i am scared stiff! hope things are going well for you. the tabletts can take a while to realy work and for you to get used to the side affects but hang in there xx
 
Hi all. Thank you for the lovely messages since the last time I posted your support is amazing and always makes me feel better. The good news my pain from the gastritis has gone as long as I don't move. Because I was feeling better I made the mistake of going for a short 10 minute walk yesterday and I paid for it, I was completly wiped out, shakey and in pain by the time I got home so my husband has told me to take it easy. I hate being like this as I feel completly useless and can't even look after my son at the moment so am relying heavily on my husband and mother-in-law who has been a god send! I have got my endoscopy on Thursday and although I am terrified I am hopeful that they will find out exactly whats going on and if it is my meds for the Crohn's disease thats causing it and then maybe they can review my meds and get me on the mend. My plan of action is to take it easy and rest up so that I am better by the 28th of this month as my husband and I are susposed to be having a rare night out to see Derren Brown and I have been looking forward to this for nearly a year and I am dertemend to go even if I have to dope myself up on Tramadol. I am under the care of Torbay hospital and have to be honest I am not very impressed by them. When I was in hospital last week they didn't really do anything, just stuck me on a ward and forgot about me. The only reason I have got the apointment for the endoscopy is because my GP rung the hospital and shouted at them until they did it. My GP said they should of done it when I was in hospital.
I hope you are all well and enjoying life.
Much love,
leg xxx
 
Welcome leg! I'm new to this all too.. u'll find brilliant support on here, so hang in there! Sounds like your gp is brilliant and that's what you need here in the uk for someone on your side to push you through the bureaucracy that is the NHS.

I'm wondering about the iron people are put on, why iron and not b12? As far as I'm learning I thought low iron in crohns is as a result of b12 deficiency? Thanks in advance.
 
Hi Mia, thanks for the lovely message. My GP is great and it is definitely good to have someone from the NHS who listens to me and fights my corner as I'm not sure I would get through this without her as at the moment I am very depressed (I suffer with mental health issues anyway and my health being the way it is really doesn't help.). I have no idea about the iron, I guess I just trust that doctors know what they are doing so when they said iron tablets I said OK although since I got ill with the gastritis I have stopped taking them as I was having problems keeping them down, I plan to resume taking them once I have had the endoscopy. I have however learn that maybe I trust doctors too much and should be asking more questions and pushing for better treatment etc. so I do plan on seeing my GP to discuss the situation of the iron tablets. I am also supposed to be taking a calcium and vitamin D supplement but again do not plan on starting this until I have had the endoscopy done. I take so many pills and meds that I'm sure I would rattle if I jumped up and down lol.
 
Mia Eire said:
I'm wondering about the iron people are put on, why iron and not b12? As far as I'm learning I thought low iron in crohns is as a result of b12 deficiency? Thanks in advance.
Click to expand...
Low iron is not caused by vitamin B12 deficiency. However, ANEMIA (specifically megaloblastic anemia) may be caused by vitamin B12 deficiency (though not always) as low B12 causes inhibition of DNA synthesis in red blood cell production. IRON DEFICIENCY anemia is caused by low iron which is also common in people with Crohn's Disease. This can be as a result of bleeding, dietary causes, surgical resection, malabsorption, and inflammation. If that doesn't make sense, please let me know and I'll try again :)
 
Hi all. I have an update for you. Firstly sorry in the delay, I have been feeling pretty ill. I had my endoscopy done.....never again!!!! I choked the whole way through it and was quite traumatised afterwards. They did confirm that I have gastritis and they have also found a hiatus hernia but I'm still waiting for the biopsy results. So because of what they found I have to keep taking the omeprazole on top of my regular meds for my crohn's. I also have a bladder infection at the moment and due to being ill I have become incredibly low so my doctor has started back on my antidepressants :(. Hubby and I have stopped trying for a baby as I need to sort my health out before getting pregnant again. David I would like to thank you for your info on vitamin b12. After reading your last reply I thought it couldn't do any harm to have my levels checked so I had a blood test done yesterday and should get the results at the beginning of next week so I will let you all know the results. Have a good weekend everyone and I hope you are all well. xxx
 
Thanks for the update hun.
Sorry to hear you have not been well and your endoscopy didnt go as good as you hoped.
Glad to hear you have got some news though so it wasnt a wasted test!
Hope you start to feel better soon.
Hope you and hubby have a good weekend.
Xxxxxxxxxxxxx
 
Thank you guys, your support has been amazing :). I'm feeling much better than I was with regards to the pain just low on energy and very tired. The good news is I have a brilliant weekend coming up as hubby is taking me out for a nice meal tomorrow evening and then we are going to Derren Brown which I'm really looking forward to. xxx
 
Hi Leg2, I am also from Devon, Croyde Bay, beautiful! Interesting reading your story and I hope you get sorted very soon. This site is great as having Crohn's can be so lonely as at clinics you never see anyone else with the disease and there are no IBD nurses in North Devon to taslk to. I have had Crohn's for 12 years and have managed it with various meds, but have not had remission for over 2 years now. I am about to go onto injections of Humira and hope to get relief from the pain and cramping and bleeding.

Know Teignmouth very well, have family living there. Good luck, will follow your progress
 
Hi Lou. Thank you for your comment. I'm really sorry to hear that your Crohn's is bad and I really hope the injections work for you and that your pain soon subsides as like most people on here I know how bad the pain can be. I completely agree about Crohn's being lonely, until I joined here the only people I knew with Crohn's were a couple of family members that I'm not very close with and did feel very much alone. The support and advice I found here has been amazing! Sending you best wishes for the future. Leg xxx
 
Good luck with everything my dear. I've just had my second baby after a 6 year gap. I could have done it a bit sooner but waited until I was feeling on top form ( as well as having enough money!!! ). I would absolutely recommend waiting until you're a good 6 months in the clear from your flare. If you get pregnant during a flare it persists through out the pregnancy but if you get pregnant in remission its very unlikely to flare up. after both my (very healthy) babies I got sick with crohns pretty bad. Husband helps a lot but it feels rubbish missing out on stuff sometimes. I'm sick this week with infection and my 15 month old has flipped from mummy's girl to daddy's number 1 fan. I know it's silly but it's making me a bit sad and resentful.

Good luck with your meds and the docs (asking question of the NHS and go in with a notepad and make notes, this freaks them out and increases quality of care - in my opinion). And most of all, enjoy your baby xxx
 
Hi Sam. Thank you for your message and I'm very sorry to hear you are not well and hope you feel better soon. I completely understand about the feeling of missing out on things especially with the little ones as I also get the same feeling. My little boy is nearly 18 months old and regularly flips between mummy's boy to daddy's boy and then back again and I agree that can also be difficult but try and stay positive your little girl loves just as much now as she ever has and in a few days or weeks will soon be mummy's little girl again.
I really hope you are feeling better soon.
Leg xxx
 

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