So many questions!!!

[jennifer659804]

Hi,
I'm hoping to raid your brains for some tricks on managing my husband!
To cut a long story short he was diagnosed with crohns about 7 yrs ago. Ups and downs along the way.
I love him to bits but he's not the man I met five years ago.
He's on a lot of meds. He doesn't like being the focus of attention so it's hard to get him to the doctors/dentists/blood tests/vets (!!) at the best of times. He also doesn't like discussing these reviews. I now go with him so we can get the info I need to help him but there's still so much I don't know.
He's on Imuran. Predesolene. Pentasa. And smokes a bit of weed for thereputic excuses!
He's often angry paranoid and irrational. It's taken me a long time and a lot of antidepressants to realise he has problems. For a while I thought I was being overly sensitive by getting upset over the accusations of using his tooth brush, cheating, putting the Hoover purposefully in his way, washing his clothes tooo often! I need to lessen these side effects for him/us. Any ideas??
Is it the weed or meds?
Would anything help release the excess med induced testosterone? More exercise?
I also worry about his diet. we know he needs more calcium and fat than most. We know lager chilli and gluten make it worse. I know it's not caused by diet but is there anything I can introduce to help?
His mum died from a stroke in her forties and his dad has had two in his fifties. We obviously need to keep an eye on this but paired with crohns should we do anything differently?
We're not sure how the meds affect Our child bearing potential and have therefore always said they're not essential in our relationship. They're not. But I want to make sure we're not basing our decisions on mis information. Would his meds affect the health of our baby?
I also would like clarification on hereditary chances. We've been told it's not hereditary but husbands grandmother has it. Only sibling and only 2 cousins have colitis. Would our children be more susceptible?
I'm also burying my head in the sand for a bit with my own tummy troubles. I was diagnosed with ibs at 14 which has gradually got worse to the point where my symptoms out shine husbands. I've been tested for allergies crohns and colitis all negative. But I've been told my antibody count is 7 x what it was three years ago. I feel like if this is just bad ibs I'm wasting nhs money pursuing this further. I struggle to get perspective on this as I can't remember how normal feels. I'm guessing the other alternative is cancer. It's been mentioned by Dr as both grandmothers have colon cancer but also put to one side as I'm young. Can high antibodies be ibs or cancer? If only ibs then I'm happy to put up with it quietly. I was put on mebeverine until results came through. It has had not effect. I've also previously tried fibro gel and other anti spasmodics. No effect. I phoned for results so haven't spoken to Dr yet. Obviously I need to man up and get this sorted but in the meantime with husbandit crohns plus my ibs are we just creating a child with a higher chance of problems? I do not want to put a child through the pain that either of us suffer.
I know I'm requesting a lot of info but pls feel free to contribute snippets of advice. It would be so appreciated. Xx

 

[rollinstone]

Hi jen sorry to hear of your and your husbands struggles, dietary advice I can offer is try the scd/gaps diet or strict paleo for a few months, this should get rid of yours and your husbands symptoms substantially if not completely, there's a great website called scd lifestyle which will help you. I know diet is different for everyone but if you can give the diet a go strictly for even one month, I think you'll both feel a lot better.

 

[dave13]

Welcome Jennifer659804

I am glad you found the forum.Let me start by sharing this link to a spouse support group http://www.crohnsforum.com/showthread.php?t=48675 like minded people can help.Click on the 'support groups' on the bar above for a complete list.

In my opinion,his use of 'weed' or cannabis is helpful for your husband.Many of us use cannabis for medicinal purposes.There is a medical marijauna thread on the forum too http://www.crohnsforum.com/showthread.php?t=18359 If you have concerns or questions on the use of cannabis,check it out.Some knowledgeable crohnies there.

It's good you go with your husband to appointments,you need to know this important information.Do you talk to the doctors? I write down questions before my appointments so I don't forget to ask them.

There is evidence crohn's can be hereditary.Like other diseases with genetic links,it does not mean successive generations will get the disease.It is a possibility,not a certainty. There is a trying to conceive support group http://www.crohnsforum.com/showthread.php?t=14859

You can't bury your head in the sand with your own troubles.You need to take care of yourself.Like IBD,IBS and stress do not go well together.You should not put up with your own health issues 'quietly'. Minor issues can become major ones when neglected.Work with your doctor,keep them in the loop and updated on your health status.

There are many helpful people on the forum.I'm sure others will chime in too.

Again,welcome

 

[PowerToolGuy]

Sorry to hear it has become a constant struggle for you Jennifer. Prednisone can have the very nasty side effect of easily setting off someone's temper, and playing with their emotional state. It is a nasty thing which makes one wonder do the benefits of it outweigh the side effects.

Prednisone will also lead to future problems like osteoarthritic type issues if not kept in check.

As far as the weed goes, never tried it even though I have been in what some would call the absolute worst pain a person could endure without dying.

My brothers have tried pushing me to smoke weed for the pain and relaxation and want me to get a med use license. Only problem is that there probably wouldn't be any of it left for me to use by the time they are done visiting all the time.

Everyone responds differently to different treatments, different foods and different environments around them.

Congratulations on being a very supporting wife interested in coming here to find out as much information as you can. I have really only recently joined, but have had Crohn's for 27 years. Been married 20 years and my wife has had a real rough go with me for the last 15. Even our 3 kids have suffered because of me.

Take comfort in knowing that everyone here on this forum will be here to support you and offer advice or just comfort if that is what you are looking for.

Sending well wishes to you husband and you.

 

[UnXmas]

I don't think your or your husband's illness should influence whether or not you try and have children. There is an hereditary element in Crohn's, however, I don't believe that it is such a terrible disease that you wouldn't want to risk putting children through it. A life with Crohn's is still a life worth living.

I don't know about the mood and personality changes that may result from weed, however, steroids used to treat Crohn's can certainly cause all sorts of psychiatric symptoms. If you can get your husband to discuss them with his doctor, he may be able to tell you whether medications are responsible in your husband's case, and change his medications or lower the doses he takes in order to try and help with this. Changing antidepressants may be of help too. Sometimes just remembering that it's often the meds that are causing the more extreme moods may help you deal with them - it's not necessarily your husband's fault when he acts in certain ways. (And of course it's not your fault either - even if he's taking his frustrations out on you, remember that you've done nothing to deserve them!)

A healthy, balanced diet and exercise will help with his health overall. However, there may be times when he is too sick to exercise much, and rest or gentle exercise is better. With diet, a big problem with Crohn's is often that some of the foods that are healthy for most people contain too much fibre to be easily digested for people with digestive problems. Fruits, vegetables, whole grain cereals and nuts and seeds may worsen symptoms, so he may want to test these foods by reducing them and see if his symptoms improve. Vitamin supplements can be useful if he isn't able to tolerate much fruit and veg, but some people handle fibre fine, so you'll probably need to go through a bit of trial and error to find the best diet for him. Dairy, very fatty foods, spicy foods, caffeine and alcohol are also some of the more common problem foods, but again, it varies from person to person. There is a test for lactose intolerance to see if dairy is a problem.

Foods that are healthy and usually easy on the digestive system include white rice, lean meat and fish, white bread or toast, certain fruits (bananas, avocados, tinned peaches and tinned pears), smooth soups, smooth peanut butter, potatoes without skin, and if dairy is ok, yoghurts, ice cream, and similar puddings. But again, some trial and error to find what suits him will be necessary. You can also get supplements such as Ensure which provide all the nutrients you need.

But don't make too many dietary changes at once, as you need to be able to recognise which changes are helping (or not), and don't make any radical changes.

I think you should ask your doctor about your own problems, it's the only way you'll know for sure, and you shouldn't have to put up with symptoms unnecessarily when there may be treatment available. You might also ask about the effects of medications on fertility. I think the main problem in this area would be that if you are also diagnosed with IBD, some of the medications used to treat it may not be safe to take during pregnancy. I'm not aware of any effects that meds may have on your husband's fertility or the health of any future child, but again, you'd need to ask a doctor who knows exactly what your husband is taking, what doses, etc. to be sure.

It's nice to see how much you care for your husband.

 

[my little penguin]

Big hugs
Genes are just that a small chance
My dS was dx at age7-he is 10 now.
Once we found the right meds things are mostly good.

Do you see a famiky counsler either separately or together ?
That could help your DH with his emotional stuff since this can be hard until you get some sorta of control.

Side effects of the meds -DS was on pentasa & 6-mp at one point
And didn't not have those types of issues

 

[jennifer659804]

Thank you so much for your advice. I'll work my way through xxx