My Wife's Daily Battle

Greetings Everyone,

My wife and I have been reading through these touching stories to give us inspiration and confidence in fighting whatever illness that she may have. Renaye is 29, we just got married 6 months ago, and for the past 2 months have been feeling the following symptoms:

Diarrhea
Pain on the lower right side of the abdomen
Cold/Warm all the time
Body Aches
Constantly Thirsty
Weight Loss (has lost 30 lbs in the past 2 months already)
Naseua
Depressed - at times
Hard time staying focused
Productivity has decreased tremendously at work
Fatigue
Nervous
Uncontrollable shaking
Loss of balance
Loss of appetite
Pale skin
2x of 24hr of no bowel movements (in past 2 months)

I came to this forum for help. As her husband, it hurts me to see her in this pain and the fact that I cannot do anything is absolutely killing me. It has taken a toll on both of us, but definitely more her than me. She also feels guilty for putting me through this with her. No matter how many times I tell her that I'll be by her side through everything, I feel that it's taking a tremendous toll on her. I've been to everyone of her appointments, and will continue to be there for them all, but I just wish that I could do more.

Here's a history of what we've been through as far as doctors are concerned:

1.) After her symptoms started, we consulted our general physician who ordered a full range of blood tests, thryoid function tests, stool tests - including testing for a bunch of different bacteria (i think).

2.) Once everything came back negative, he ordered a CT scan which showed nothing really out of the ordinary. (A cyst was found in her right ovary, and a calcification on her left)

3.) Once the cyst was discovered, she had a vaginal ultrasound performed to see how big the cyst was.

During this time, the symptoms kept continuing on a daily basis. Our doctor recommended us going to a GI specialist.

4.) A colonoscopy was done, and from all the biopsies - everything seemed normal. Doctor stated that she had inflammation in her small intestine, and took biopsies, but nothing came back conclusive. Doctor also noted internal hemoroids.

5.) GI doctor declared Renaye have Irritable Bowel by exclusion, but wanted to perform additional tests.

This coming week we have the following tests:

Small Bowel Follow Through on Sat

HIDA Scan on Mon

Second opinion from a leader in GI disease at the University of Chicago on Wednesday as well as seeing the Gyne doc to see what to do about the cysts. As well as a couple of more blood tests.

My internal doc thinks it may be Silia Sprue or Crohns.

The one thing that we have not told any doctor is the fact that my wife smokes cannabis to take control of her symptoms. None of our doctors know that. I feel that a lot of her symptoms haven't been as severe as many of you due to the use of cannabis. Have any of you used cannabis to relieve your Crohn's symptoms? This is the only published study I've found linking cannabis and CD. Feel free to check it out. Should we tell our 2nd opinion doc about the cannabis use?

http://www.ima.org.il/imaj/ar11aug-01.pdf

Either way...we would love to hear from the forum. This has been a tough time. Dont want to give up hope, and dont plan on giving up hope. I will fight with my wife, and we will fight CD and kick it's arse! =) Look forward to hearing from everyone.

Welcome to the forum! Understandable with you going to all her appointments. My husband goes to the majority of mine too. It's helpful because sometimes he remembers things I don't and this way he has a better idea of what's going on. Feel free to ask questions too... Might not be a bad idea to inform the doctor about her smoking. Many like to know all the things you've tried to help yourself. Hope she can get diagnosed soon. Take care.

Hello and welcome to the forum, you have definetly come to the right place. I am pleased that some more tests are being done and they are not just leaving it at the colonoscopy. Once thing I would ask the doc about is the inflammation in the small bowel - surely IBS does not cause this? Getting a second opinion can also help. I would agree that it is most probably worth mentioning the smoking that way the docs can't claim that you never gave them all the info. Have they given Renaye anything for her symptoms at all? My husband goes to all my appts etc and I cannot tell you how much that helps so good for you for being there for her. Sending lots of hugs and let us know how things go with the tests.

Thank you cross-stitch and angrybird for your response. My wife is apprehensive about taking medicine. We are both against taking all these pills so as of right now she is currently taking nothing.

Since she has not been diagnosed with Crohn's they really haven't prescribed us anything. Doctor wants her to take Bentyl (for cramps) and Immodium AD for the diarrhea. Instead, she smokes cannabis when the cramps come.

I can understand the reluctance of starting a load of medications. One thing you can both do is have a look at our diet and supplements forum which will have lots of info abut what foods can trigger symptoms, key culprits are things like dairy, caffeine and things like popcorn and foods with little pips and nuts in them. Keep a food diary and see if you can find a correlation between certain foods and then a poorly tummy. Also have a look at the treatment forum so you are then armed with all the info about these so when they are mentioned by the docs you know what questions to ask and if this is something you even want considered.

That is going to be tough for her. She lovvvvvves dairy products....mainly cheese. Is there any way that she and CD can live happily together?

It's worth cutting it out for a few weeks to see if it helps. I cut several things out and found it didn't help at all. I added it all back (one at a time) and nothing made it worse. But if it could help her, it's worth finding out.

I will let her know. I will keep everyone updated on her status. If it werent for cannabis, I wouldn't know what to do for her. It seems to be the only thing to help her maintain somewhat of a normal life.

I can only imagine how terrible it would be if she didnt have her meds. The one day that she did not, she has violent diarrhea numerous times, and cramps. When she has her meds, it's not that bad.

Hey everyone....my wife and I have some updates. We could use some help.

This past Saturday was my wife SBFT procedure. All in all, it was relatively simple, but the barium drink is brutal. I feel for all of you that have to drink that drink. This is my wife's third time drinking that nasty stuff, and I dont know how her or any of you could do it. Much respect goes out to all of you. The total test took a little over an hour for her.

The SBFT came back negative. The story of our lives. At this point we had all the tests to bring to our 2nd GI specialist. We went to go see Dr. Semrad at the University of Chicago; 6th best GI clinic in America. The doctor did a thorough consultation with my wife. Spent about 3 hours looking at all bloodwork, results, and did an exam on my wife. Over the course of the exam, the doctor did ask numerous times about if anyone in her family had stomach cancer, cancer in general, or crohns. Doctor said the word crohns a couple of times - but she also went in a completely different area that no other doctor thought about.

She became concerned about the dehydration and my wife's nutrient intake and to see how bad her malabsorption was. Even though the colonoscopy, CT, and sbft were negative, she mentioned a couple of abnormalities that no one caught. 1st, the total time for the barium to reach the colon for my wife was 42 minutes, and she said that was a bit abnormal. She did preface it with it's not 15 minutes abnormal, but 42 minutes is rather fast for the barium to reach the colon. Also, the previous GI doctor stated that in the colonoscopy, my wife's duodenum was inflammed. This is what caused the new doctor to focus on my wife's pancreas.

Now this new doctor is putting my wife on a high fat diet of 100g of fat per day. She has to do this for 3 days straight and on day 3 and 4, she has to collect all stool from the entire day to measure fat content. The doctor wants to test for stool fat and see how much fat is in there. She said if it is high in fat, then the cause is the pancreas. (which I hope to god isnt the case). We will let everyone know the outcome of that test.

Also, a hyperechoic lesion was found in her right overy measuring about 2cm. (which is rather large). We did a pap smear as well....so only time will tell. It was originally though to be a cyst found when taking the CT for her tummy problems. We then had a transvaginal ultrasound done, in which it was determined to be a hyperechoic lesion, and the size of it grew. Took my wife to a gyne and had a pap smear done. Waiting on those results.

Please keep us in your prayers.

My son's colonoscopy also returned a negative result for crown's and then when he had surgery the pathology also returned a conclusion of no convincing evidence of Crohn's but he certainly has it.

Has your wife had blood levels done for B12, Iron Stores, Folate and Vitamin D? If not I'd suggest you have them done as it may explain away some of her symptoms and provide a pathway as to what may be going on.

Sending luck and healing thoughts your way.

Dusty. xxx

We have not had those tests yet. I think in due time they will be done. Right now, I think the main focus is on why she is having malnutrition. Also they want to check her diarrhea as well. They wanna make sure that it is the actual 'definition' of diarrhea, rather than just watery stool. Once they determine that, I think they will procede from there.

i really hope you both get the answer to your wife's illness soon. its horrible to be in limbo like this.
make sure you keep us updated x

I understand.

Just keep them in mind though as more often than not they will not be run. If her B12 is low it may well support the finding of inflammation in her small bowel that was seen during her colonoscopy as the terminal ileum is the only area of the intestine it is absorbed.

Dusty. xxx

Thanks everyone. Being in limbo absolutely sucks. It sucks for me seeing her in pain, and also being helpless in not being able to do anything. So, I can only imagine what she's going through.

Thank you for the update. This doc seems like a good one and hopefully will be able to find the answers you need. It is encouraging that they looking into these things and are not just going 'ah well, we can't help'. Definetly keeping you both in my thoughts and I have my fingers crossed.

My son has CD

As a mother of a son who was just recently diagonsed with CD, I understand what you are going through with your wife. My issues are that no one believes my son is really hurting and that it is not that bad. I am taking the time to research this topic because it is obvious that many no nothing about the symptoms or what it is really like to have this disease. My son's father is an RN and he keeps telling my son "you do not look like a crohns child" and that he does not have chrohns. What a jerk. My issue is my son was in the hospital 7 months ago 5 days before his 21st birthday. The hospital said that he had hepititis. WRONG. finally 1 week before thanksgiving, he was officially diagnosed with CD. His pains are horrible and there is not much he can eat without pains. I think we may be switching specialists because this dr has not done much for him to get this into remission. In the mean time, my son has not worked in 4 weeks. he sleeps constantly partially because of the disease and partially due to the pain meds he is on. He is about to lose his first car, cell phone, and has many co-pays he can't pay because he can't work. he has applied for diability and i am praying he is accepted. So many other tell me that he is lazy and that hurts me because I know better. My other concern is that my son currently has insurance through his dad, but his dad is using it as a "hold" on my son. Even when he can no longer be on his dad's insurance, i am finding he may not be able to get insurance for CD. This is absolutly nuts (for all diseases not being able to have insurance and these diseases being concidered pre-existing conditions). what can he do to pay these bills until he can go back to work? (other than me paying his bills). I have read many postings on here and they have been quiet helpful. I think too that my son may need to speak to someone because I think he is depressed and having a tough time accepting and dealing with this disease at a young age. We also understand about all the testing and people telling you all is ok, nothing is wrong, or that they can't determine what the problem is. as for canabis, it is illeagle and that is not an option for us. in our opinion and research, there are many legal ways to deal with this disease but to each his/her own and we all need to do what we feel is right for us when the medical field cannot help. The pain looks to be unbearable, maybe even worse than childbirth. thanks for listening. I feel somewhat better.
:hug:

Hi leo and :welcome:

I'm sorry to hear about your son...:hug:

I'm also sorry to hear that your son's father has that attitude, it is heartbreaking enough without hearing that.

I hear about the misdiagnosis, my daughter went undiagnosed for 18 months with many red herrings along the way, it just adds to the fear and frustration!

Please have look through the diet forum...

http://www.crohnsforum.com/forumdisplay.php?f=17

What medications is your son taking?

Where is his Crohn's located?

If you feel that the doc isn't right for your boy then do seek a second opinion or change doctors. It is so important that you have faith and trust in your child's GI, no matter what age your child is.

I can't help with the insurance side of things but there are many members here from the US that should be able to help you out.

Good luck and welcome aboard!

Dusty. xxx

PS. I will copy your post to your own thread so more members will see it and welcome you.

yes

i have use canabas to help my crohns symptms for years it really helps. i also just got preccribed maronol it is thc in a pill for that is approved by fda u should really look in to it its awsome hope this helps and hope they find something soon