Losing my Wife to Crohns

[Worried_Husband]

My Wife was diagnosed with Crohns just over three years ago, a diagnosis we are not entirely convinced is correct but that's another issue.

Looking back she believes that she has had dietary issues throughout her life, during her early teens she lost a year of school to ME/Chronic fatigue. She went vegetarian and this kick started her again and subsequently in her early-30's started to have problems with dairy so became vegan and this once again helped. However she started to suffer from digestive problems and these got quite severe and painful to the point where she actually consulted a Doctor (which is a big thing for her as she has a real fear of medical intervention).

We were referred to a consultant who diagnosed her with Crohns and wanted to begin treatment on Humira straight away. She said she would like to pursue a strict dietary regime to start with and the consultant reluctantly agreed. After a few months with little or no improvement she was basically told "I told you so" by the consultant who put her on Humira. This was not helpful and as well as not making a significant difference to her symptoms it laid her low with infection after infection and sores which refused to heal. Until in the end she simply stopped taking it and now she is at least free of the side-effects.

The trouble is that now she feels the medical profession has failed and she is left on her own, her current management method is eating 'normally' and when the symptoms get too bad she fasts (the longest she has managed was 16 days) until she gives herself a chance to heal. However as someone who has little willpower with regard to food this is very challenging and she quite often gives in after a few days.

As her Husband I have watched her go from an outgoing vivacious and independent woman to a virtual recluse who spends all day in bed with her laptop. She puts on a brave face for visitors or when we go out, but at home she is moody and short tempered with the family. I have tried to get her to go to a different consultant for a second opinion but she is now resigned to a life where food is the enemy and nobody understands what is wrong with her or can help her.

I've got to the stage where I'm treading on eggshells and trying to manage normal family life as she has no interest in day-to-day domestic chores. This is interfering with the time I can put into my business and financially we are only just about keeping our heads above water.

I did try to get her to go to another consultant and she got a referral from the Doctor but never filled in the paperwork so nothing every happened. We're in the UK so we get free healthcare but that only works if you can persuade the person to go to it...

I'm at a loss as to what to do, I'm trying to be supportive but in her depressed state nothing I do is right and when I try to intervene it's perceived as meddling. So I'm at a bit of a loss as to what to do next.

WH.

 

[mom5272]

I'm sorry your are experiencing this and your wife. I've had CD for 24 years and see a DR consistently, take my meds (100mg of 6mp), try and watch my diet and my life has been very good. I do take an anti-depressent to help with my anxiety and slight depression. This has allowed me to live a normal, decent life. I flare once is a while and short term steroids get me back of track. Your wife really needs to seek medical care for the appropriate meds and if she's depressed, there are treatments to help her immensely. She can live a good, productive life with CD. Yes, it can be stressful and trying at times but such is life. I believe that most of it is your outlook. When I dwell on having a chronic disease, it affects my mood and depression. I don't know what I would do without my Doctors. Unfortunately, people with the disease that don't have consistent medical care, can end up doing more harm to themselves by developing complications that sometimes are difficult to treat and turn around. Best of luck to you and your wife.

 

[scottsma]

Your wife is obviously depressed, and she's very lucky to have you for support.
You say she spends time on her computer,so has she had a look at this forum ?
There are lots of people on here who have appreciated the support and advice we offer ,and it has given them the motivation to make appointments and get on the road to feeling better.Her first port of call is her GP....Start from scratch.Get her to make a list of symptoms,frequency,diet etc.,and of course her depression.She must fight for herself.She is entitled to feel better and to get on with her life,before everything spirals out of control.
Best wishes to you both.

 

[AVP]

I am very sorry man, I understand to a degree... I am not sure if this will help but I quit all my meds because nothing worked for my UC over the last 6 years, I was never in a remission and never have had any relief. I finally told my doctors to screw themselves because I have been bleeding every day for at least 6 years and ready to kill myself. Daily I was always tired, dizzy and miserable sometimes unable to function mentally because of the light headedness. Anyway a few months ago I started taking, 1 vitamin D3 gel pill, 1 good quality CBD pill, 1 Fiber pill, and 1 probiotics pill daily. It did help slow down my bleeding but I was still a mess. I then started eating a Romaine Salad 2 times a day almost a month ago because I was craving it bad for some reason. I have completely stopped bleeding and I am starting to feel very normal again. I have also cut down on the vitamins to every other day, but I continue to eat a Romaine salad twice a day. I am really hoping this lasts because my life has been hell for the last 6 years. Either way, I can give you a list of exactly what I take for the supplements etc. Either way, don't give up and keep trying everything until you find what works.

 

[happy]

Welcome to the forum Worried_Husband,
It is very hard to function normally when you are malnourished. If your wife has been repeatedly fasting for that length of time, then she is likely malnourished. As you are in the UK, you may wish to contact Addenbrookes Hospital. They use an elemental diet (EEN) (a liquid formula) to induce remission of Crohn's followed by an exclusion diet. The diet tests each food for a reaction as one returns to eating solid food while still supplementing with the formula.

It is not an easy process, but it would have the added benefit of uncovering any food sensitivities that she has. The premise is that each person has bowel flora that keeps things healthy, but when this flora gets out of balance, IBD develops. The elemental diet helps to reset the flora and the exclusion diet maintains this new balance. This is the process that I used to get healthy. I too was in a difficult place with physicians and lack of help and I lived far from a major center. The wait for me at that time was 7 months to see a GI-- I was so ill at the time that I had to find a way to help myself while I waited.

The following is some info about the treatment:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4285926/
http://www.cuh.org.uk/news/gastroenterology/team-dedicated-resolving-digestive-disorders

This is the food diet used to reintroduce solid food:
http://nutricia.co.uk/e028/uploads/LOFFLEX_Diet_Diary_Full.pdf

You may also find reading some of the experiences about using EEN helpful. You can find info about that here: http://www.crohnsforum.com/forumdisplay.php?f=161 and also here: http://www.crohnsforum.com/showthread.php?p=694576#post694576

Also, my own success story is here: http://www.crohnsforum.com/showthread.php?t=31028

A member who has recently used EEN, and who is not fully diagnosed is Cat-a-Tonic. She may post on this thread as well or you could look for her posts here: http://www.crohnsforum.com/showthread.php?t=78778&highlight=entocort

Good luck--try to hang in there. It was a tough couple of years for me, but my life and also my husband's is great now.
:goodluck:

 

[ronroush7]

Welcome. Your wife needs medical supervision. This disease can do damage we are not aware of.

 

[Honey]

Hi there, and welcome, so sorry you and your wife are finding this illness difficult. Of course, it is! It is a very individual illness, what works for one may not work for another. Even meds may work for a while ,then a change is needed so understandable you feel low! Speak to your G.P. as your wife does need support and understanding.
Reading this forum, the experiences of others would be a good start for her. I certainly found those who are not experiencing the pain, frequency of going to toilet etc do not understand how you feel. That can be upsetting, when they tell you how well you look and do not stop to listen. Of course, it is personal too and you certainly do not want to discuss all that with people either!!! That is where this forum comes in when you have worries and feel low. Sharing experiences and asking advice gives you support you need, I am using it now: I have been asked to consider going back on Remicade infusions and am worried about side effects I suffered last time. There is also Humira injections to consider. I have a great Consultant who listens. If you can encourage her to talk to a Doctor and ask questions, express her concerns, etc. that would be a good start. Best wishes, thinking of you both. Let me know how you are. :rosette1::welcome::rosette1:

 

[MissLeopard83]

Has your wife ever been tested for endometriosis? I have it and though, at the time, I had IBD since many of my symptoms manifested in my gastrointestinal tract. I also have Celiac disease which went undetected until 2012 or 2013 and gluten-free has made my life flip 180 degrees. Endometriosis made me feel, quite bluntly, like crap and I was tired of doctors making me feel like it was all in my head. I had test after test and no one could figure out what it was until I landed in the ER - the ER doctor did not figure it out, but it spurred my OB/Gyn to do an emergency pelvic ultrasound and discovered how thick my uterine lining was. At the time, I was on Depo-Provera which was supposed to thin the lining and help with my cramps. It actually made it 10x worse and now I'm scheduled for surgery in October.

I think you and your wife should consider other causative factors, especially if both of you are questioning the Crohn's diagnosis. It doesn't sound like she received the support she deserved from the doctor. There are REALLY good endometriosis specialists - including one in Atlanta - if that's where her problem lies. Good luck.

 

[aypues]

Humira isnt the best first choice. I would ask about Remicade, the most effective of the biologics for Crohn's. It's commonly used in combination with an immune modulator (imuran, 6mp, methotrexate, or cellcept). It can put Crohn's patients into remission quickly. It worked for me within a few days!! Humira did nothing for me.

 

[my little penguin]

Second trying een
It's as effective as steriods
No side effects
And fixes a lot of Gi stuff not just crohns
Ds has done it a few times now and always improves things
At the very least will get her body nutrients so she can think things through
Ds takes neocate Jr which is elemental formula ( no diary or any other allergen )
It's made in the uK

 

[The Real MC]

Patients who fear medical intervention are making it worse on themselves. Crohns is a dangerous disease with this mindset. My mistake was waiting too long to get help, I will never do that again.

 

[embyrr]

Agreed - there are more rudimentary medications containing mesalazine that may already cause a difference for her.
Keep being supportive, it must be very frustrating and requires a lot of strength to be in your position. Remember, however, that she is suffering it - so make sure to keep the brave fast until the last possible moment. She needs to get a diagnosis and kick the habit of fasting, it only causes damage.
Only we can move past the depression, you have to realize you are not sick all the time even though you carry this sickness with you all the time. There is a clear distinction that needs to be made.

Do understand that she is only labelling you as 'meddling' because of her own frustrations with the issue. I am certain she appreciates and treasures you for being supportive during all this, and for being there. Sometimes when we find ourselves in deep pits we are unable to express how we truly feel because everything becomes clouded in pain/discomfort. Don't let that get you down. Your wife is still there. She just needs to push through this, and she needs your help to do it.

Continue being gentle and try to prod further medical appointments, a diagnosis will eventually come as will a prescription for a medication that can soothe or abate her symptoms.
Sending my support to you and your family. Being the partner of someone with an IBD disease is not easy, especially when it is causing damage such as this.

 

[valleysangel92]

Hello and welcome to the forum, I'm sorry you've found yourselves in this horrible situation.

Firstly, let me say that Humira is not the only medical option, there are lots of other medications that can be tried either with the humira or instead of it, so you are not out of options at all.

It's quite obvious that your wife is struggling to come to terms with her diagnosis and it seems she will need a lot of gentle encouragement. Here in the UK they will not put you on Humira unless they are certain that you need it, so her inflammation must have been quite severe for her to be given approval for it in the first place. I know you say that you are uncertain of the diagnosis being correct but its really important that if it is correct she gets proper treatment and supervision. Crohns can progress really quickly and emergencies can happen in the blink of an eye.

It is possible to get a second opinion, in the UK we have NHS choices, which promotes patients being able to choose where they get their treatment and who provides it. One route is to directly ask the hospital for a different consultant, another is to go to your GP and ask them for a referral to a different hospital but then this will put your wife back to the end of the waiting list.

Does her consultant know she has taken herself off the Humira? If not then it's really important to tell them as it's not the kind of drug you can just pull yourself off without medical supervision.

I would also advise caution regarding the fasting, this can be really dangerous if its not done correctly and 16 days is a long time to go without proper nutrition. If your wife is keen on this sort of treatment then it would be worth enquiring about Enteral nutrition with a specialist formula such as modulen. This is a specially produced drink that contains complete nutrition and replaces meals for a period of around 6-8 weeks. It's been shown to help reduce active inflammation and help improve symptoms such as pain and fatigue. It works best when used as the sole source of nutrition though so needs quite a lot of will power to stick to.

Do you think your wife might consider coming onto the forum and having a look or even a little chat with us? I think its important that she sees how dangerous Crohn's disease can be and gets back to the doctors to get it confirmed and treated. Even if you are correct and it isn't crohns, something is obviously wrong and needs treating. If it is Crohn's, she could be risking her life by avoiding medical help. Complications like a burst bowel are a medical emergency and are life threatening. I am not saying this to scare you or her, but to emphasise how important it is that she doesn't keep ignoring whats happening. If she would feel more comfortable talking on a one to one basis I am happy for you or her to inbox me directly.