Wow what a great site.wish this had been around when i was diagnosed.there are lots of frightened people on here so rather than me answer individuals I'll give a short profile.I'm 54,female,menopausal,mother of 2 girls (was at my healthiest while pregnant) and have a beautiful granddaughter.Presently on codeine phos,imuprine (warning:this med causes skin photo sensitivity, only just found this out after being on for many years and not using sunblockers) folic acid,vitamin D, calcium.Prev been on prednisone(had to come off, been on too long) salazopyrin,pentasa.Was on codeine phos and prednisone throughout pregnancy & breastfeeding but had to drop the salazopyrin.Have recently had a bone density scan hence the Vit D and calcium I'm on now.Since being on imuprine(azathioprine) I'm pain free.Unfortunately the years of scarring are causing bowel blockages and I had my first op 4 years ago - removal of sm amount of intestine and rejoin. So bring on the queries re pregnancy/menopause/blockages or anything else
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37 years of crohns
- Thread starter KJS
- Start date
xJillx
Your Story Forum Monitor
Hi KJS and welcome! So happy you found us! It is always nice to have experienced members join the forum.
Great news to hear you are pain free, but I am sorry about the scar tissue.
I will throw a question your way regarding pregnancy as I one day soon hope to start a family - How was your postpartum period? Based on the many stories I have read, it seems pregnancy can provide a great remission, however, the postpartum period can be very challenging. I want to have children, no doubt, but I fear giving birth will progress my disease.
Great news to hear you are pain free, but I am sorry about the scar tissue.
I will throw a question your way regarding pregnancy as I one day soon hope to start a family - How was your postpartum period? Based on the many stories I have read, it seems pregnancy can provide a great remission, however, the postpartum period can be very challenging. I want to have children, no doubt, but I fear giving birth will progress my disease.
ameslouise
Moderator
Hi KJS and welcome! Sounds like you've been thru a lot and tried a lot of different meds! Your experience with all that will be a great asset to our little forum here!
- Amy
- Amy
Thanks for such a warm welcome. 'Experienced Member' made me laugh, might consider putting that on my CV - NOT. This reply is particularly to xJillx. I'm not sure how to post to forum yet so hope this works. My GP once told me I should be pregnant all the time. Something to do with Mother Nature needing to look after baby by keeping Mum well. But then hormones was mentioned in one of these threads so perhaps we need to fool the body into thinking it pregnant?? I never suffered the pregnancy constipation my friends complained of or the haemrhoids. My Crohns all but disappeared. However within 9 days of my first birth things changed. Crohns was back with a vengeance. I struggled to breastfeed, giving up after 6 weeks due to DR advice it was taking too much out of me. My second birth was better - I was given a massive dose of Prednisone straight after birth and breastfed for longer. The Crohns reappeared but not so violently.
I was never concerned about the meds I was on at time of conception, pregnancy & breastfeeding as I trusted my doctor's assurance that they would not affect my babies. However we now know doctors aren't GOD, they can get it wrong. I was once told my first daughter should have had an adrenalin shot at birth due to codeine phosphate crossing placenta and her having withdrawal problems. I've never been able to find out if this is true and I did get access to my birth records to check if she was given adrenalin. I found no record of that.
It took me 5 years to get pregnant with my second child, a bit over a year for my first. Was this due to long term use of steroids or not?
Therefore if you are considering getting pregnant or are already pregnant, get well informed about the meds you're on.
Hope that helps. Take care. Karen (KJS)
I was never concerned about the meds I was on at time of conception, pregnancy & breastfeeding as I trusted my doctor's assurance that they would not affect my babies. However we now know doctors aren't GOD, they can get it wrong. I was once told my first daughter should have had an adrenalin shot at birth due to codeine phosphate crossing placenta and her having withdrawal problems. I've never been able to find out if this is true and I did get access to my birth records to check if she was given adrenalin. I found no record of that.
It took me 5 years to get pregnant with my second child, a bit over a year for my first. Was this due to long term use of steroids or not?
Therefore if you are considering getting pregnant or are already pregnant, get well informed about the meds you're on.
Hope that helps. Take care. Karen (KJS)
Hi KJS, scarring is the absolute pits & has caused me no end of problems in the form of strictures which I've been in & out of hospital with for 18mths now. Even after my last surgery Aug last year & I had strictures by the december. Horrible pain when it goes into blockage mode.
Skin sensitivity is a common side effect it seems with so many of the heavy duty drugs they use to combat Crohns, I've 3 carcinomas thus far & from being a sun worshiper I'm now found in the shady bit covered in sunblock. The price we pay eh.
Keep well
Grant
1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
Been on Azathioprine & Pred
Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs
Skin sensitivity is a common side effect it seems with so many of the heavy duty drugs they use to combat Crohns, I've 3 carcinomas thus far & from being a sun worshiper I'm now found in the shady bit covered in sunblock. The price we pay eh.
Keep well
Grant
1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
Been on Azathioprine & Pred
Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs
KJS sounds like you are just a little ahead of me.
I'm 48, had crohn's since I was 26, also had two healthy pregnancies...guess I should really say healthy babies, because even tho I took high dosages of prednisone during both pregnancies....I ended up in hospital for both due to exhaustion and for IV steroids to stop flares. I saw a specialist ob/gyn who was experienced with "high" risk pregnancies.
Overall I did feel better pregnant, but was just so completely exhausted....had to stop working in 6th month for first and 4th month for second, then felt better...but basically just laid around all the time like a beached whale! lol
I, too, wish I could have found these boards earlier on....but came looking for them just a few days ago as I am facing the possibility of surgery!
My latest symptoms are not my usual -- lots of D, exhaustion -- but bouts of D after days of C and extreme pain in my gut around my navel with bloating. My GI thinks I have a stricture due to scar tissue (blood work doesn't indicate infection/inflammation)...had a CT scan Thursday and am waiting for the results!
Have a long history of female issues -- which at times were difficult to distinguish from crohn's issues -- so had an endometrial ablation 8 years ago. Since then, no periods, no period cramps, but ovaries still intact so still getting hormones (I guess....haven't been checked to see if I am in menopause).
I took prednisone for over 10 years and discovered I had the bones of a 70 year old when I was in my late 30s/early 40s: I was osteopenia....so took fosamax for a while and recovered bone density.
Anyway, I'd love to hear from JKS and Grant on resections....I'm particularly nervous about this....did you prepare before surgery by taking certain supplements or were they emergency surgeries?
Thanks and blessings to all on these boards..... so sorry for the novel...it's just so awesome to find so many other people who know EXACTLY what I am going thru. Husband tries to understand but .....
I'm 48, had crohn's since I was 26, also had two healthy pregnancies...guess I should really say healthy babies, because even tho I took high dosages of prednisone during both pregnancies....I ended up in hospital for both due to exhaustion and for IV steroids to stop flares. I saw a specialist ob/gyn who was experienced with "high" risk pregnancies.
Overall I did feel better pregnant, but was just so completely exhausted....had to stop working in 6th month for first and 4th month for second, then felt better...but basically just laid around all the time like a beached whale! lol
I, too, wish I could have found these boards earlier on....but came looking for them just a few days ago as I am facing the possibility of surgery!
My latest symptoms are not my usual -- lots of D, exhaustion -- but bouts of D after days of C and extreme pain in my gut around my navel with bloating. My GI thinks I have a stricture due to scar tissue (blood work doesn't indicate infection/inflammation)...had a CT scan Thursday and am waiting for the results!
Have a long history of female issues -- which at times were difficult to distinguish from crohn's issues -- so had an endometrial ablation 8 years ago. Since then, no periods, no period cramps, but ovaries still intact so still getting hormones (I guess....haven't been checked to see if I am in menopause).
I took prednisone for over 10 years and discovered I had the bones of a 70 year old when I was in my late 30s/early 40s: I was osteopenia....so took fosamax for a while and recovered bone density.
Anyway, I'd love to hear from JKS and Grant on resections....I'm particularly nervous about this....did you prepare before surgery by taking certain supplements or were they emergency surgeries?
Thanks and blessings to all on these boards..... so sorry for the novel...it's just so awesome to find so many other people who know EXACTLY what I am going thru. Husband tries to understand but .....
Hi allicat1214. Ref.Resections, only supplements before surgery I've taken was the drinks that contain a lot of calories. I cant remember what they are called but I preferred the milkshake ones rather than the fruity ones. Last year I came close to emergency surgery but luckily for me my gut cleared after obstructing so it was done as a planned surgery (Laproscopic). Really the build up was routine, eat a low fibre diet & stop eating the day before. Enema an hour before.
I had 3 bouts of obstruction in a 7mth period & that was scarey enough without having to face emergency surgery. On the other hand once you know you've got to have it a lot of people wouldn't mind it over & done with. What a funny lot we are eh. Ref the pain, I can sympathise. Its absolute agony & shakes you up considerably. I couldn't stop vomiting until they fitted me with an NG tube-pure relief.
Try not to stress too much if you can help it-not easy I know, my 1st surgery back in 97 gave me 2 1/2 years of complete remission. It was pure heaven. I would try to go about your daily routine as much as you can & before you know it it will all be over.
Very best wishes
Grant
1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
Been on Azathioprine & Pred
Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs
I had 3 bouts of obstruction in a 7mth period & that was scarey enough without having to face emergency surgery. On the other hand once you know you've got to have it a lot of people wouldn't mind it over & done with. What a funny lot we are eh. Ref the pain, I can sympathise. Its absolute agony & shakes you up considerably. I couldn't stop vomiting until they fitted me with an NG tube-pure relief.
Try not to stress too much if you can help it-not easy I know, my 1st surgery back in 97 gave me 2 1/2 years of complete remission. It was pure heaven. I would try to go about your daily routine as much as you can & before you know it it will all be over.
Very best wishes
Grant
1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
Been on Azathioprine & Pred
Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs
- Location
- Ireland
Hey KJS and Allicat1214
I too have only just joined in the past few days and wish I'd done it a long time ago, there are some great people on here, everyone shows such courage and even in their own difficult times are only to willing to listen to others. I'm a mum of two girls age 3 and 1yrs. and yes pregnancy was the business, was in remission before each but have to say I sailed through with only the smallest issue's. I did have two miscarriages also in the last 4 yrs but always bounced back. the hormones have a lot to answer for and hold a lot of possible information if more research was put in, Like contraception drugs and how they can increase our chances of osteoporosis at an earlier age due to absorption issue. I had dexa scan at 25 and was told I had bones on 80yr old but two pregnancies later have rebuilt bones to closer to my age of 35. there's always hope.
It's great to hear all these stories and know that if we in turn can help the newly diagnosed come to terms or answer any questions related to our own experiences it been a good day.
Looking forward to more chats
Gwen x
I too have only just joined in the past few days and wish I'd done it a long time ago, there are some great people on here, everyone shows such courage and even in their own difficult times are only to willing to listen to others. I'm a mum of two girls age 3 and 1yrs. and yes pregnancy was the business, was in remission before each but have to say I sailed through with only the smallest issue's. I did have two miscarriages also in the last 4 yrs but always bounced back. the hormones have a lot to answer for and hold a lot of possible information if more research was put in, Like contraception drugs and how they can increase our chances of osteoporosis at an earlier age due to absorption issue. I had dexa scan at 25 and was told I had bones on 80yr old but two pregnancies later have rebuilt bones to closer to my age of 35. there's always hope.
It's great to hear all these stories and know that if we in turn can help the newly diagnosed come to terms or answer any questions related to our own experiences it been a good day.
Looking forward to more chats
Gwen x
- Location
- Ireland
Hi xJillx
Just read your post about pregnancy, I'm here if you have any questions, My littles ones are 3yrs and baby turning 1 next week. I also had two miscarriages, I don't want to put any down idea's in there as pregnancy can be complicated even for those who don't have health issue's just want you to know I seen both sides twice. Was on meds and even had to take preds & pred enema's from 30 wks on both, but that only helped in the long term.
Feel free if you have any questions
Gwen xxx
Just read your post about pregnancy, I'm here if you have any questions, My littles ones are 3yrs and baby turning 1 next week. I also had two miscarriages, I don't want to put any down idea's in there as pregnancy can be complicated even for those who don't have health issue's just want you to know I seen both sides twice. Was on meds and even had to take preds & pred enema's from 30 wks on both, but that only helped in the long term.
Feel free if you have any questions
Gwen xxx