New with crohns after pregnancy flare

[Indismum]

Hi everyone,
I'm a 33 year old woman who lives in australia. I got diagnosed with crohns 3 weeks ago, after having my daughter nearly 5 months ago, I've been unwell since having her. I had some symptoms previous to being pregnant, however always just thought I had a tummy bug & the symptoms always went away after 3/4 days. I got my first peri anal abscess in 2007, I had it drained surgically & dr told me it was due to an ingrown hair. I battled with abscess in the exact same spot on & off for years, constantly having it drained, probably in total 20 times. After falling pregnant with my daughter the abscess became unbearable and I went to see a specialist who told me I have a perinanal fistula, and I couldn't give birth naturally, which was fine. My beautiful daughter was born in April, and after being home for a month with her started having the awful cramps and urgent need to go to the toilet. I'd have to leave her on the floor and run. This went on for 2 weeks until one day I lost control of my bowels and took myself off to emergency at the hospital. I stayed for four days, and they wouldn't let me leave! They were surprised I hadn't been tested for crohns earlier due to my abscess trouble. So after many tests, a scope, a colonoscopy and many Many mris I've been diagnosed with crohns and a fistula that breaks off into 3 places. The drs are telling me pregnancy hides the crohns symptoms and once the baby is born they come back a lot worse. I'm now on imuran 100mg and been weaning off predisolone since being in hospital. Thing is I'm still not feeling well. I'm a lot better than I was but my stomach makes these horrible gurgling noises, so loud everyone can hear and I constantly feel sick in my stomach. I feel like I can't see a light at the end of the tunnel. I keep having weird anxiety and nervousness, at times when people are talking to me I feel really vague and odd. Does anyone else have this? I feel like I'm going crazy. I've had to break plans with friends so many times, I think people are starting to believe I'm not really sick. How can anyone be sick this long? Some days I eat all day, I am overcome with starvation and other days can barely eat. I'm also a smoker and I know it's not helping ate ll but finding it so hard to quit when I'm so flat and stressed about this awful disease. I'm normally. Happy bubbly person and I feel like I'm not there anymore. I've always been a bit on the curvy side which I find odd as most crohns sufferers are thinner but I've absolutely ballooned since being in the steroids. Please tell me I'm not alone out there!

 

[Pointy_ears]

Hi Indismum you're definitely not alone. There are lots of parents on the forum that have had there fair share of troubles caused by Crohns. It isn't as uncommon as you may think for more shapely people to have Crohn's it can affect us all differently and weight loss is just one of many possible symptoms.

I think your immediate hunger may be caused by the steroids, I know I ate like a horse when I was on them, also I think your days of not eating as much may be caused by over indulging on a hungry day or just because your feeling rundown at the moment.

It's important to remember that your body has been through a lot lately with pregnancy and then a Crohns flare and then meds that have a powerful effect on your body. You really need to give yourself a break and take some time to try and rest and heal. The rest will come in time.

To help with your over all mood and state of well being it may be worth considering counselling, myself and many people on the forum have all had counselling at one time or another and have found it a very useful and enriching experience.

Also if you're concerned about your meds not working properly or giving you issues I would highly recommend getting in touch with your GI doc and having everything reviewed to see if there are other treatments that may suit you better.

Sorry for the long elaborate reply, but welcome to the forum and I hope you start to feel better soon.

 

[David]

Hi there and welcome to the community. How long have you been on the Imuran now?

Have you had any vitamin/mineral tests done? Specifically vitamin D, vitamin B12, and magnesium? Those are COMMON deficiencies in people with Crohn's and can lead to some of the symptoms you describe.

All my best to you.

 

[Jessy]

Hi Indismum - I am sorry you are going through this. I, too, flared after giving birth, but I knew I had CD for a few years prior so becoming pregnant. Change in mood and appetite is a common side effect of prednisone. It is a difficult drug to say the least. How fast are you tapering off of it? A slow taper is key (like 5mg per week). I hope you feel better soon!

 

[AlyssaCrystal18]

Hello, I've been diagnosed with Crohns for 4 years now. I have only had two flare ups before I got pregnant with my daughter who was also born in April, but 2012. A month after she was born, I began to get a flare up again. In my case my Crohns got so bad, I had a fistula in my bladder and intestine where a hole went in between the two so I had to have surgery to have some of my intestine removed. Not trying to scare you. But my point is, from my experience, that the gurgly noises are normal, the pain will get better, and symptoms will ease over time, when the flare goes into remission. Your body needs to be on the Imuran at least a month for it to get going, and the doc will test your blood to check if he needs to adjust the amount of imuran you are on. It does get better! You may need to just get used to having to use the bathroom a lot, always know where the nearest bathroom is! And perhaps use some anti-diarrheah with your doctors approval. Its what I do. When the flare supsides you should be able to go back to normal activities and some what normal eating. Your body may not do so well with high fiber foods, so take it easy with those. But everyone is different and you will have to adjust your diet to what your body can handle. For me, whole grain gives me gas, and veggies like corn and peas will give me some pain and diarrheah. Good luck, and know there is a light at the end of the tunnel!

 

[AlyssaCrystal18]

Also want to mention, really if you can, try to de-stress..relax, use some techniques like a bath or music to relax. My disease flares whenever I am really stressed and it may make it a little harder to get the symptoms to go away if you remain stressed. Once you are off the prednisone (common side effects are hunger, wanting to eat, and inability to sleep), you should feel a little less stressed too since the med can make you feel anxious. Hoping for the best for you!

 

[Ckoenig]

Hi there. I am a 32 year old woman. I have 3 kids. I am thankful I had them long before I am now having this trouble so I didn't have some of the issues you are now. I just got diagnosed with Crohn's as well. The part of your post I wanted to address was the feeling out of it when people are talking and the anxiety piece. You are NOT alone. I feel this too. Make sure your doctor checks your B-12 levels. If you have Crohn's it is likely your body can't absorb that vitamin and not having it can make you out of it, foggy, and SUPER PANICKY as well as depressed. Do some research. I get B-12 injections and it has made a world of difference for me. I also take a probiotic that helps a lot for me with the digestion issues. Getting your B-12 level up will help a lot with the anxiety. I take .25 (a very small dose) of xanax as needed as well to help cope with the stress of not feeling well, and the fear. You are not alone in feeling "crazy" etc, but the good news is you are NOT. This is real and what you are dealing with is very real. My thought is to keep honest communication with friends. Let them know what you are going through. Anyway let me know how your B-12 levels come out and keep in touch! Good luck!!

p.s. I know easier said than done but truly try and cut the smoking for your daughter and yourself. You will feel so much better. You can find other coping mechanisms that will serve you much better in the long run!

Hugs

Hi everyone,
I'm a 33 year old woman who lives in australia. I got diagnosed with crohns 3 weeks ago, after having my daughter nearly 5 months ago, I've been unwell since having her. I had some symptoms previous to being pregnant, however always just thought I had a tummy bug & the symptoms always went away after 3/4 days. I got my first peri anal abscess in 2007, I had it drained surgically & dr told me it was due to an ingrown hair. I battled with abscess in the exact same spot on & off for years, constantly having it drained, probably in total 20 times. After falling pregnant with my daughter the abscess became unbearable and I went to see a specialist who told me I have a perinanal fistula, and I couldn't give birth naturally, which was fine. My beautiful daughter was born in April, and after being home for a month with her started having the awful cramps and urgent need to go to the toilet. I'd have to leave her on the floor and run. This went on for 2 weeks until one day I lost control of my bowels and took myself off to emergency at the hospital. I stayed for four days, and they wouldn't let me leave! They were surprised I hadn't been tested for crohns earlier due to my abscess trouble. So after many tests, a scope, a colonoscopy and many Many mris I've been diagnosed with crohns and a fistula that breaks off into 3 places. The drs are telling me pregnancy hides the crohns symptoms and once the baby is born they come back a lot worse. I'm now on imuran 100mg and been weaning off predisolone since being in hospital. Thing is I'm still not feeling well. I'm a lot better than I was but my stomach makes these horrible gurgling noises, so loud everyone can hear and I constantly feel sick in my stomach. I feel like I can't see a light at the end of the tunnel. I keep having weird anxiety and nervousness, at times when people are talking to me I feel really vague and odd. Does anyone else have this? I feel like I'm going crazy. I've had to break plans with friends so many times, I think people are starting to believe I'm not really sick. How can anyone be sick this long? Some days I eat all day, I am overcome with starvation and other days can barely eat. I'm also a smoker and I know it's not helping ate ll but finding it so hard to quit when I'm so flat and stressed about this awful disease. I'm normally. Happy bubbly person and I feel like I'm not there anymore. I've always been a bit on the curvy side which I find odd as most crohns sufferers are thinner but I've absolutely ballooned since being in the steroids. Please tell me I'm not alone out there!

 

[tylerk22]

I was diagnosed with crohn's four months after having my son the only reason they found it was because I lost about 20 pounds in a matter of two weeks

 

[David]

You didn't have any symptoms other than the weight loss tylerk?

 

[StefPiek]

Its so weird reading about your anxiety.. Ive recently started suffering from panic attacks and feeling super anxious for no apparent reason, thought i was just being weird. But its kinda comforting to read im not the only one who experiences this. Does anyone have any other tips for dealing with anxiety etc?
Hope you feel better Indismum..