My uphill battle

[REDHEAD]

Hi, my name is Stacey. I was diagnosed with Crohn's in 2009 after my daughter was born. It has been a really rough ride, and continues to be! I had my daughter, then had gallbladder surgery, then was diagnosed with Crohn's. I have good days and bad days, but more bad days then good. I am currently on Humira and Methotrexate (pills). I have a wonderful doctor who is working with me to figure out what works, but it is really hard some days. I just wish it would all just go away!! :-(
I am still trying to figure out my triggers. I have started to eat some gluten free products.
I was hospitalized for a week with pancriatitise when my daughter was less then a year old.
If anyone has any suggestions i welcome them all.
Thank you,
Stacey

 

[LisaL]

HI Stacey! Welcome to the forum. I am sorry to hear that you are having pain, but it does sound like you are working together with your GI to find some solutions. It can take time and everyone's body is so different.

In terms of diet, you might try relying some on Ensure as a liquid supplement that many people on the forum seem to be able to tolerate. Then, introduce foods one at a time, and slowly. When I was at my worst, I drank hot chocolate mixed with hot water and tiny amounts of baked chicken and that was about it. Everyone is different so give the food you like a try and see how you feel.

I hope you are feeling better soon. Keep us posted.
-Lisa

 

[araceli]

Hi Stacey. Welcome to the forum. Sorry you have such rough time. Congratulations on your daughter. It's great that you have a wonderful doctor. Unfortunately it will not go away, but it can be in remission for many years, Usually the most common trigger will be spicy, greasy, some vegetables. seeds, corn, popcorn are bad for some. You will have to figure out yours. Hang in there, you will feel better son, you had to many things at the same time. Best wishes.

 

[Angrybird]

Hello and welcome to the forum.

Out of interest what meds have been tried previously and what specific symptoms do you still get? When was testing last done to check on things inside? Diet wise have you tried keeping a food diary at all? As mentioned above you can always try going onto a liquid only diet for a while and then gradually introduce foods to then work out the problem areas. I am glad to hear that you have a good GI to work with and will be keeping fingers crossed that you can be feeling fully well soon.

AB
xx

 

[REDHEAD]

Hi Angrybird,

I get lower gut pain mostly with diarriah. I was started on Methotrexate injection, that wasn't working so was changed to Humira which i do every other week, and they just introduced Methotrexate pill which i do once a week. I do keep a food diary, i know popcorn is a huge trigger for me. Thank you LisaL, I will give the ensure a try and see how that works. I go for blood work every 2 weeks, but it has been over a year since i went for a colonoscopy.

 

[Jmrogers4]

Welcome to the forum.
Both my hubby and son have Crohn's. My hubby has done the liquid diet when flaring for the last 20 years and it does seem to make a difference and slowly introduce food back in. My son is currently doing supplemental EN right now although we do not use Ensure with him - it always made his tummy hurt. We use a peptide based formula where the proteins are further broken down and easier to digest. He has been on it for a month and it is working great.
Like LisaL says it can take some time to find the right medication and combination to work for you and there are so many more choices now. When my hubby was dx'd 20 years ago standard practice was Asacol and then switched to Pentasa, never really controlled the symptoms but he has been doing really well since switching to Imuran about 8 years ago.
Hope you feel better soon.

 

[fromthegut]

Hi Stacey,

I jsut wanted to say welcome to the forum and i am sorry you haven't been feelign weel. I too was diagnosed with crohns in 2004 ? ( I think) I am doign much better today than when i was. i ahev ahd other health and life issues. I haven't seen my GI in a long tiem. I may have to go to a new one as I no longer have a car to drive myself ?!!
I also don't have a famiyl doctor but am workign on that !! I am very grateful that i ahev a Walk In clinic and the Emergency room at a local clinic . I ahevn't had a colonoscopy in a while so I probably shoudl ahev oen soon !
Best of lcuk . Be greateful for the bad *and* good* days. They were all teaching lessons for me !! I am sending ym prayers out to you your daughter family and friends

 

[Franceshop]

Hi Stacey welcome, I am keen to know if you crohns symptoms got worse after the gallbladder surgery? My gallbladder was removed and i have been in constant pain since and now they think i might have crohns. Waiting on a endoscopy at the end of the month.
i hope your medication starts working really soon, xx

 

[REDHEAD]

Hi Stacey welcome, I am keen to know if you crohns symptoms got worse after the gallbladder surgery? My gallbladder was removed and i have been in constant pain since and now they think i might have crohns. Waiting on a endoscopy at the end of the month.
i hope your medication starts working really soon, xx

Hi Franeshop,

I didn't have any gut pain until after my gallbladder surgery. It was 4 months after my surgery when the pain started, it was so bad i didn't eat for 3 weeks, and i ended up loosing 35lbs. I am lucky in the fact that my family doctor sent me for the right tests right away, and i was diagnosed within a week. I hope all works out for you and you get some answers. Sending you my prayers.
And thank you, i am feeling much better today!

 

[Ihurt]

My primary care doctor told me her sister has crohns disease and that she got it after she got her gallbladder out. I wonder if there is some connection?? Maybe just the surgery itself brings it on? It is just odd since I have talked to a few people already who say their crohns started after a surgery...

Hi Franeshop,

I didn't have any gut pain until after my gallbladder surgery. It was 4 months after my surgery when the pain started, it was so bad i didn't eat for 3 weeks, and i ended up loosing 35lbs. I am lucky in the fact that my family doctor sent me for the right tests right away, and i was diagnosed within a week. I hope all works out for you and you get some answers. Sending you my prayers.
And thank you, i am feeling much better today!

 

[JennyT]

Hi there REDHEAD. I have had crohns all my life almost but it wasnt diagnosed until last year when it became 24/7 and the pain unbearable. (I actually wondered in the first few days if I could possibly be having a baby and I was 56 and hubby had died 2 years prior !! LOL) Your symptoms tum wise sound like mine - it gets better but its a bit of a journey to get there - but it does go into remission. There can be other weird symptoms too several which I have had long term but no-one twigged they were all the same thing - keep a diary of any other health issues, it could be illuminating. Meanwhile for someone with Crohns this site is the best every club to belong to - peeps here are the best ever and very supportive and knowledgable so you will never be alone or without swupport from people who understand 100% HUGS JenX

 

[REDHEAD]

My primary care doctor told me her sister has crohns disease and that she got it after she got her gallbladder out. I wonder if there is some connection?? Maybe just the surgery itself brings it on? It is just odd since I have talked to a few people already who say their crohns started after a surgery...

They say gallstones are a contributing factor to Crohn's, but it is interesting how the pain only came on after surgery.

 

[REDHEAD]

I think i may have just figured out why i am feeling crappy.. I think my iron pills are a major cause of my lower gut pain. I haven't taken my iron in 2 days and i feel great today. I am anemic so i need the iron, so maybe i will talk to my doctor about going an iron shot.

 

[REDHEAD]

Hi there REDHEAD. I have had crohns all my life almost but it wasnt diagnosed until last year when it became 24/7 and the pain unbearable. (I actually wondered in the first few days if I could possibly be having a baby and I was 56 and hubby had died 2 years prior !! LOL) Your symptoms tum wise sound like mine - it gets better but its a bit of a journey to get there - but it does go into remission. There can be other weird symptoms too several which I have had long term but no-one twigged they were all the same thing - keep a diary of any other health issues, it could be illuminating. Meanwhile for someone with Crohns this site is the best every club to belong to - peeps here are the best ever and very supportive and knowledgable so you will never be alone or without swupport from people who understand 100% HUGS JenX

Hi JennyT, wow, yes the pain sometimes feels like i am having a baby, totally relate there. Yes the support and the information i get here is amazing. I am so glad i joined, because i was starting to feel lost. HUGS back at ya!

 

[JennyT]

To be honest - I think Crohns is related to every blimmin thing! However that is not a clinical statement LOL I reckon the immune system is forever poking its nose into everything our body does and when it gets triggered by something it thinks it cant handle it goes beserk trying to sort it and can over react throughout the body causing all sorts of trouble in all sorts of places :voodoo:. Despite having had Crohns for a long time, I have this gut feeling (no pun intended) the very serious flare that started the road to a correct DX and effective (sort of so far) treatment was a massive motorcycle accident I had with wounds, crush injuries, infections later and whatnot just before the flare. I suspect it was all just too much for my immune system so it started munching at everything at an alarming rate to compensate. Again - that is not from a clinical standpoint hahahaha I think of my immune system as a load of little pacmen - wish they would just bugger off and munch on something sensible - sorry the steroids made you so sick and sleepy little guys, but it was your own fault! :ybatty: No doubt a Dr reading this thread will put me right within minutes HUGS JenX

 

[Ihurt]

Hey JennyT,

Actually what you say makes a lot of sense. I mean our immune systems are what makes us run basically. When something goes awry there, well crap starts happening. I mean I am not 100% convinced that crohns is a autoimmune disease. I kind of think that the term autoimmune is used to loosely by doctors. The problem lies in what is causing the immune system to go wacky whether it be a virus, a bacteria, or like you said even a major traumatic event( accident etc..). I mean like you said, you contracted infections after your accident, well who knows maybe that has something to do with it. I am not even diagnosed yet, still going through the motions. But I do know that doctors really have NO clue when it comes to these diseases. All they know is that with IBD, the intestines get inflammed and can cause damage. That is all they know! They give you a bunch of meds hoping to take down the inflammation. If that dont work they just pass you off to a surgeon who is cut-happy and will remove the diseased part of the gut. Well that is not the answer either since surgery alone is a massive blow to the immune system, it is very hard on the body and that will just empower the crohns and it will likely go attack another part of the intestines. I mean I seriously wish the doctors would look into what is Causing the crohns. This is the important key here. But what am I thinking, doctors dont want to find a cure for anything. They are just interested in bandaids!

To be honest - I think Crohns is related to every blimmin thing! However that is not a clinical statement LOL I reckon the immune system is forever poking its nose into everything our body does and when it gets triggered by something it thinks it cant handle it goes beserk trying to sort it and can over react throughout the body causing all sorts of trouble in all sorts of places :voodoo:. Despite having had Crohns for a long time, I have this gut feeling (no pun intended) the very serious flare that started the road to a correct DX and effective (sort of so far) treatment was a massive motorcycle accident I had with wounds, crush injuries, infections later and whatnot just before the flare. I suspect it was all just too much for my immune system so it started munching at everything at an alarming rate to compensate. Again - that is not from a clinical standpoint hahahaha I think of my immune system as a load of little pacmen - wish they would just bugger off and munch on something sensible - sorry the steroids made you so sick and sleepy little guys, but it was your own fault! :ybatty: No doubt a Dr reading this thread will put me right within minutes HUGS JenX

 

[REDHEAD]

Hi JennyT - I agree with that, i find my joints hurt a lot when i am having a flare, like its not bad enough my guts hurt, now my joint hurt... ugh
Wow, sorry to hear about your bad motorcycle accident, i hope you have fully recovered from that.
You are too cute, haha

 

[JennyT]

Thanks ihurt - I was expecting a post from a Dr saying "Jenny - you're dumb!" LOL There is so much unexplained about this disease and certainly it is the immune system attacking the wrong thing that causes the numerous problems we all face in different ways and to me its just logical the reason why - I think (wanna hear my other theory?) humans werent designed to cope with this bizzare hi-tech, hi-stress, low exercise and outdoors and little wheeeeee factor life our dollar-based world dishes up to us - its not a design fault that we are seeing new illnesses that are difficult to understand developing in these times - its an environmental fault. The things you think about in the middle of the night when the old tum is playing up and you cant sleep! Just an aside - my GI told me the immune system doesnt attack the gut - it trys to attack to food thinking its an interloper and potentially dangerous - and the gut gets in the way and takes the hit - well he didnt quite put it like that but thats exactly what he meant re food being the primary cause of wrongful identity, I was surprised as Id never heard that before (no I hadnt just come out of anesthetic!). Havent seen that theory on here, wonder if its valid?? HUGS JenX

PS REDHEAD sorry to have hijacked your thread for a mo, I shall be a good girl now and go sit on the loo! :kiss:

 

[JennyT]

Me again - I get really painful joints too Stacy - especially my heels where the tendon joins and big time in my shoulders when sometimes it hurts to even point at something (Like the remote - give it to me!!) I havent often cried because of Crohns cos I deal with most things by peeking about for the funny side - but like you, when I realised my gut hurt AND I was crippled with joint pain too and it was all Crohns I was so bummed out I wept my little heart out. Its good to talk to folks that understand eh? There is worse, my husband was a paraplegic and dropped dead 3 years ago - he inspires me as he would always say "Jen, the sun always comes up in the morning" HUGS JennyX PS OH he didnt actually DROP dead being a paraplegic an all - he just kind of slid away - my soulmate - fancy leaving me behind!! grrrrrr

 

[REDHEAD]

Hi JennyT, i get it bad in my hands and knees, the odd time my shoulders. I love my heating pad!! lol
I am the same as you i try my best to be on the funny side, but behind closed doors sometimes i do have a good cry.
I am sorry for your loss, he sounds like he was always positive. The main thing is you have many good memories with him! :kiss:
Yes it is so nice to have people that understand. It is amazing how some people look at you funny when you ask for a substitute, like i went out for dinner with my husband one night and i asked if their buns have sesame seeds, she said yes, i asked if it they had any without seeds. She said she did and they asked me if it was a preference and i told her it was a condition that i have that i cannot have seeds, she looked at me funny and told me the manager would have to come and talk to me! Sure, please send the manager (who was much more understanding)!

 

[JennyT]

It must be sucky having it in your hands awwwwwwww EMPATHY!! I have it just in my thumbs, I used to be known for my handwriting (just cos I liked to write pretty) but now its an illegible scrawl cos I can barely hold the pen! (Thank you Lord for laptops and keyboards!! LOL) Yes my husband was a unique and extraordinary man, I was his first wife and we married later in life - my third hubby <blush> and so we only had 6 years together but they were wonderful years and I learned that marriage to the right person is a wonderful thing, we had the same birthday and often finished each others sentences and he was SO funny! He was damn smart and street wise too. His death took a long while to get over, I was pretty messed up but I am now thankful for two things 1) He showed me resiliance is possible no matter what, and 2) I learned how to grieve - cos thats what we all do dont we, we grieve for the life we had before Crohns became a monkey on our backs. I laughed at your bun story - during my worst flare Id skip the bun too and just ask for meat, no veg, no sauces. Weird eh - meat was the first thing I could eat once the steroids got me past the forcing down fortisip and bananas stage. It still is my best bet when Im having a bad day or two and feeling weak but doesnt help with the squirty pooh!! Oh joy joy - shall we talk about smelly farts next post hahahahaha Im off now to go get some loo paper. HUGS Jen XXXX