Will I ever feel good again?

Hi , yes I'm new! My name is jennifer and I am a 33yr old mother of 3 ages 7, 5 and 3! I have had crohns and ibs for many yrs, and was officially diagnosed 13 yrs ago! Since pregnancy was a challenge with meds I completely went off everything and managed pretty good , until my last pregnancy in 2011! After my third child I was immediately put on Imuran with that my doc was sure I would find some relief!!! Well it turns out my body had an allergic reaction and gave me severe pancreatitis, which I guess only happens to 3% of people taking Imuran ! Well then , my gi retired and I had to meet my new young gi who wanted to do all of his own testing on me, cause he needed to diagnos me for hisself , so s copes showed uslcers and inflammation and whatever! ! Nov 2012 I had a stricture that had to be surgically removed! The surgery was jan 13 2013 !! This is when I fell into depression and have had bad anxiety ever since! I was put on methotrexate and humira ! My crohns was still active and did not go into clinical remission until that summer! Still having lots of diarrhea !! Bile salt and from ibs!!! So what was the point!! I guess I had to have it because of potential bowel obstruction! So now I sit here today still having cramps++ and diarrhea ++! I came off my mtx and humira , no change! I now just take codeine for my bowels!!! I guess that sums up my my history! Sorry to bore you!!

Hi there, no bore, you sound lovely and not feeling so well.
it can be rough but it can also get better.
Have you had your b12 checked? Low levels can cause fatigue and depression/anxiety symptoms. If you had your join at large small removed then sometimes d can happen. Certain foods can increase the d after resections. Also d3 might need a check??

I know it can be a bummer ~ and especially when you need energy for your family. Do you have a behavioral therapist, preferably one who is familiar in chronic illnesses? They have the ability to teach coping skills for situations and might help with anxiety. Chronic illnesses tend to cause depression/anxiety, so many understand the feeling.

Hang in there, IBD is like a roller-coaster... there will be ups and downs. Try to think of what you are grateful for, every time you start to think a not so great thought/feeling ~ focus on something good. I know this may sound silly, but even though we have an illness we have so much to be thankful for. We are alive, seeing our children grow, able to still enjoy certain things. We can't take what we do have for granted.

with much peace and good vibes.

I do take b12 shots but now that I think of it, it has been a while!! Gonna do it right now!! And I do see a councillor and psychiatrist! They are adjusting my meds for that but still I feel no change!! I'm currently taking Effexor 150 and up to 300mg of seroquil and Ativan .5 it'd!!! With my bowels and anxiety I find it really hard to leave the house! I also take codeine contin 100mg for my bowels bid and that seems to work sometimes!!!

Have you tried or had any experience with diets designed to help with crohns?

Actually not really,, I guess I found that it really didn't matter what I ate! They say I have ibs as well, so I'm a little confused on diet? I have actually gained wt since I have started antidepressions and antianxiety meds!

Hi there
Just wondering if you have any help at home? 3 young children in your situation - not easy I am sure. Personally I find my children drain the little energy that I have, but some people manage to channel their childrens energy back into themselves (if only!).

Hi chaosjen,

I just wanted to say that I certainly understand the depression and frustration when surgery and meds don't bring an improvement in your quality of life. Been there

It is so hard to struggle on and battle Crohn's. Are you still seeing a gastroenterologist?

If you are it might be time to look for a new doctor if you don't feel your current one is doing enough to rule out the many things that can go along with Crohn's and help you to overcome the issues you are currently experiencing. It's very hard finding a new doctor when you are feeling defeated by this disease but I know that there are times that I wish I'd done it sooner - either that or just demanded better explanations for the symptoms I was having and treatment targets from my doctors!

One thing you can be sure of is people here will never be bored by hearing about bowels! It just goes with the territory, you know.

Hi king of orange, I do have some support at home, but not much! I am in a comman law relationship with a man for 13 yrs, he works nights and dosent help to much around the house or much with the kids! He's a very loving dad and plays with them, but I do everything else! Our relationship has been an issue for a while! He dosent understand crohns that much he just knows I use the bathroom a lot!!! He thinks I'm lazy! He dosent get that I have no energy !! And he really dosent get anxiety and depression,,, he drinks!! One morning he actually said" I think you gave me crohns" bahahahaha ,,,ii told him ya it has nothing to do with the 15 beer you drank toast night!! Yup that was a long time ago!! My mom helps me when she can! She also has crohns and is in remission! She takes remicade but still has flare ups!! I love her and would be lost without her!!!! She has been away for about 3 wks with her sick sister,,so I'm feeling the loss of support!!! I guess that's why I joined this forum!!! Im so glad I did!!

Hi 24601,,, thanks for your post! I do see a gi but not for another month or two! He is a very smart man but lacks compassion! He's new to my country so I gave him a break and he has come around!! He is just about my crohns and doesn't understand that I'm not a book with exact symptoms! Yes he knows I have crohns and diagnosed me himself!! He said I was in clinical remission! So I don't know where I stand,,,, he said I have ibs and functional pain! He did put me on mtx and humira but I have since stopped both meds since I am having a hard time with anxiety!! I have had no change in bowel habits since the change! I'm just tired of it all!! I know you probably been there!!

Well since you're having symptoms my first thought is are you truly in remission? Do you have copies of blood test results to see what your inflammatory markers are like? And do you know if that was ever a good indication of inflammation for you?

Ideally I'd think you'd do a fecal calprotectin test to to see if that indicates any inflammation either and repeat scopes and/or imaging as appropriate to give you the best information that you can get to know whether your symptoms are caused by active disease or if there's anything like another stricture or tightening of the join from the resection that might be contributing to your symptoms.

Have they done any scans or scopes since your surgery?

If it isn't active disease then I would be looking to see if you have any other issues - this article from the Mayo Clinic is a look at the things you should consider when a Crohn's patient isn't responding to treatment. Basically your doc should always go through the list and rule out
1) enteric infections (C.Diff and Cytomegalovirus are mentioned in particular)
2) celiac disease
3) lactose or fructose intolerance
4) IBS (only possible to diagnose they say when no active disease is present)
5) bile acid diarrhea
6) SIBO
7) Medication intolerance

Do you know how much bowel you had removed in your surgery and the location? Has your doctor definitely said you have bile acid malabsorption and have they prescribed anything specific to treat it?

Also have they suggested a treatment for the IBS they diagnosed?

Does your GI know that you have stopped taking MTX and Humira? I understand the frustration that you are not feeling healthier than you are but since they did seem to help you get into remission they may also be useful meds for you to be on to prevent a relapse. I would certainly suggest very close monitoring by your GI to make sure any recurrence is caught early. I do understand though but it really helps if you can have an honest conversation about all of that with your GI. You are a whole person and they need to be able to treat the whole of you with all your worries and concerns - and not just text book symptoms

Hi there, 24601
Thanks for the reply,,,I haven't been on here for a while so hope I didn't seem rude not replying to your thoughtful msg!! I have seen my gi and he is going to do a full work up on me again! Scopes up and down!!:yfaint: I have also been having problems with my uterus! They say I have adenomyosis and I'm not managing the pain very well,,,,,if it's not one thing it's the other!!! My gynaecologist is thinking of a hysterectomy but he also worries that it could be adhesions from my ileocecal resection I had!!! He's scared to take my uterus and go through a complicated surgery and me not have the pain relief I'm looking for!!! I have had gyne problems for yrs!! I also have issues with general anesthetic and that's another worry!! My doc also just switched my meds from codeine contin 100 mg twice a day to hydromorph contin 3 mg twice a day,,,,he thought I had built up a tolerance to the codeine!! Since the switch I have been going to the washroom steady!!!! And do not feel pain relief!! I don't want to increase it as I hate talking about narcotics!! I'm falling deeper into depression and my home life is suffering!!

All I can say Jen is don't give up. We've all had bad times with our own situations but at least it's not fatal. The solution is different for everyone. Keep trying to find yours.