Crohn's - Please help me understand my wife's suffering

[sycophantichallenger]

Hi there, this is my first post and a post I've thought about making for a while now. While I myself am currently getting over a recent C.Difficile infection, I will heal, my wife's condition however has a considerably worse prognosis.

First, a little about us. We have been together 9 Years, Married going on 4. We currently reside in a relatively remote community in Northwestern Ontario, Canada home to about 5000 residents. The local hospital is relatively "advanced" given our low population size and remote location, as our community serves as a hub to many fly in or winter roads only accessible first nations communities to the north.

I am 34 years old and aside from the recent C.Difficile infection, brought on by a clindamycin prescription for a cyst I had recently, I am generally in good health. She is 28 Years old and, while the diagnosis is not official, all doctors involved are 90% sure that the correct Diagnosis is Crohn's.

Since August of last year, she had been experiencing loose or inconsistent BM, and while we had spoken to our GP about it in approximately late September, early October things didn't really hit a fevered pitch until approximately Mid-November. I returned home from work and found that she had been couch ridden, vomiting and having diarrhea all day long and was so week she could barely stand. We visited the local hospital's emergency room.

It was at this point I found that the results of the CT scan performed about a month prior, while unclear, were indicative of Crohn's. It was unclear as she is so thin and has so little fat on her body (she has always been petite), that the it was difficult to differentiate if the white space of the CT was swelling or small amounts of fat deposits. She weighed in at 91 lbs which is about 20 lbs underweight of her ideal body weight. I was of course angry that we were not followed up with, on the results of the CT scan, but it is somewhat typical of the overtaxed medical system in our community.

Regardless, She was prescribed a tapering regimen of Prednisone, an anti-biotic treatment, and started on 3000 mg/day of Sulfasalazine. Initially, any relief of symptoms was a godsend, so while she was frail, and we attributed most of her difficulties with the side effects of prednisone in these early days, she has never returned to the state of health that we expected she could. I guess, we just kind of accepted that the discomfort that she experiences on a daily basis was the new "normal".

Recently it's been suggested by a doctor that she may be not be being properly medicated and her symptoms are more than they should be. The problem being that there is no local GI specialist and we are required to travel 5 hours to the closest GI specialist, which of course incur travel costs, hotel/food costs, etc. So, we are not in close contact with her GI specialist. In fact, she has only had 1 appt with the GI specialist since her referral and at that meeting absolutely nothing clinical was done other than referral for a colonoscopy and MRI scheduled for June of this year.

The Colonoscopy was scheduled quickly, local to us and we followed all instructions provided, dietary restrictions, golytely to clean the bowels, etc, but unfortunately the surgeon was unable to go far enough, due to a blockage. Luckily, the colonoscopy disrupted the blockage enough that it cleared. So that brings us to where we are at today.

My wife is almost completely without energy at the end of a 4 hour shift. Her bowels are almost constantly making digestive noises and you can literally hear the fluids, etc, gurgling around. She frequently has mornings where she has 4-5 BM within the span of a couple of hours. While she has more frequent BM in the mornings, she has more pain in the evenings, and while she does not "complain" about it a lot, because again, it's the new "normal", I can tell that she is suffering and... well it sucks. And we are managing her diet as effectively as we can think of doing. I try to keep main meals very simple, multiple low-no fiber snacks throughout the day, multiple dietary supplements (boost branded juice boxes, ensure branded high protein formulation, whey based protein powder additive occasionally added to meals to fortify them, etc)

So, well I guess I don't really know where I'm going with this post, but with all this established as an introductory hello, maybe you can offer some information from your experience as to how I should approach this as a man who loves someone who is suffering. Maybe offer opinions... I don't really know, I'm just kind of lost on how to make progress and tired of feeling powerless. It doesn't help that her GP is on vacation until mid-freaking april of all times.

Anyhow, thanks in advance for anything you can offer and I look forward to learning from this community.

And a couple Q's.

1. Are biologic (anti TNF) treatments useful or prescribed for non-severe (ie: no presence of fistulae, or advanced swelling/mucosal damage, ie: no immediate risk of surgery) cases of Crohn's?
2. Have you used, or have you thought of using Cannabis for treatment of symptoms?
3. Is just a continuing medication regimen of sulfasalazine "normal" for non severe or in remission crohn's?
4. How do you "know" when things are reaching a tipping point, or identify the tipping point before it happens to be preventative?

Again, thanks.

 

[24601]

Welcome! I think your wife's symptoms are more than they should be and that they are most certainly worse symptoms than a doctor should be aiming for for their patient.

Whenever those of us with Crohn's have GI symptoms we (that's us working with our doctors) have to figure out whether the symptoms are caused by active disease, complications of the disease (strictures, abscesses) or something other than Crohn's (for example, C.Diff, concurrent coeliac disease etc.).

Usually that starts with blood work to look at inflammatory markers (ESR and CRP) and if those are raised it suggests disease activity - but these markers aren't specific to inflammation in the bowel so it's becoming more common to do a fecal calprotectin test as well which is specific to inflammation in the bowel.

If active disease looks likely then you normally treat the flare with something fast acting like steroids or Exclusive Enteral Nutrition (which means drinking or tube feeding a formula like Ensure or a more IBD specific one like Modulen without any normal food intake). Remicade or humira can be used to treat a flare but may take weeks to start working rather than days.

Even if an individual doesn't have raised inflammatory markers in their blood or even a raised fecal calprotectin level they may still have inflammation visible on endoscopy or pill cam.

If it doesn't look like there is active disease then that might be cause for the doctor to repeat the imaging and check for strictures, fistulas or abscesses.

The fact that they mentioned a blockage (a stricture in the colon?) and that you now talk of loud digestive noises and gurgling does make me wonder about strictures.

I think that if I were your wife I would contact the GI again and describe her symptoms and just how much they affect her day to day life. Because it doesn't sound like a good quality of life (in a medical sense, yknwim) even for a Crohnie. Do not readily accept this as her new 'normal' without trying more treatments and investigating further.

Because of your location and the logistics of seeing the GI, I would ask for them to consult over the phone and be in email contact if necessary and also to work closely with your GP (is there another GP that your wife can see before mid-April if need be?). That may be idealistic but when we find the right doctor then I think it's fair to say that they are usually prepared to do such things.

As to your q's:
1) Yes, absolutely. In the 15 or so years since biologics have been around there has been a change in thinking and they are more often used much earlier in the course of the disease. The idea is that by treating the disease more aggressively earlier then you can alter the natural course of the disease and hopefully prevent those very complications from occurring, rather than waiting to use them as a last resort by which time the meds are actually less effective.

2) I never have, but people do. There's a forum on here where people discuss it. A caveat: I wouldn't pursue any treatment without the cooperation and monitoring of a GI.

3) First off I'm not sure that your wife is in remission and it sounds like her doctors aren't entirely sure either. I think the presence or lack of active disease needs to be determined asap. I'm also not sure that your wife's disease should be correctly categorized as non-severe but, even if it is, the decision about whether sulfasalazine is all that is used to maintain remission comes back to the choice between 'top down' or 'step up' treatment regimens. Step up is the approach that your wife's doctor seems to be taking so far but the balance of thinking has moved over the last decade or so to believing that 'top down' is more effective.

4) This is quite tricky because symptoms can be so varied from patient to patient but I think it is so important that you asked this question especially because as you say about your wife's experience we often adjust somewhat to our new normal, sometimes even in the journey to diagnosis or in that period after treatment starts when those first treatments fail to make us truly well, and we can almost forget what healthy felt like. But I think with the extreme levels of fatigue that your wife is experiencing, her difficulty in getting adequate nutrition, her frequent BMs and the pain that you are at something of a tipping point. It is at the very least a tipping point where you say there is something about this situation that is really not right. Because it simply isn't, even for someone who has a Crohn's diagnosis. And something needs to change whether that's the treatment or the identification of another cause for her symptoms (other than active disease). And you are quite right to think about being preventative - that's what the newer but fairly widely accepted thinking about 'top down' treatment is all about.

Good luck! And, just because I think it's worth saying, you're doing a good job of being a Crohn's supporter. With this disease it's so good to have someone who will fight by your side.

 

[lynx]

1. Usually not no. These are prescribed after other treatments are not having the desired effect and before more invasive action is taken like surgery. But not always. It depends on the doctor and the patient. One reason is the cost and the other more important reason is the possible side effects.
2.tried cannibis and it did ease the pain but did little else.. it's anegesic effects are less than opioids and I found being looped out on pot annoying, then again to each there own and it could have diff results for diff people
3.it seems to be the LCD ( lowest common denominator ) therefore the broadest effective treatment as was steroid use before the discovery of the mesalmine component in sulfasalazine drugs. Sometimes ppl may respond better to masalamine type drugs sans the sulfa component. These are the first line of therapeutics used besides the older steroid compounds. This and diet modulation.
4.that is a very subjective thing. keep that in mind but also keep in mind those who are a bit stoic, I being in that camp, and sometimes seek help a bit too late in a flare when they could have maybe gotten treatment sooner and avoided a lot of pain and damage to their bodies.

Great questions all but I would speak with and get the opinions of a couple of doctors as well as getting advice from patients from a forum like this one.

 

[Hope345]

I am so sorry to hear all that your wife and you are going through. First of all I have to ask if she got tested for C.diff? that is a common test with IBD patients because they seem to be very susceptible.

As a mother of a daughter with Crohns/UC, I know that helpless feeling. Your wife is blessed to have you as her advocate. I cant imagine feeling so sick all the time and not having someone there to help.

You have gotten some great advice. I sure hope she can find the right medication that works for her and treat any stricture she may have.

I have heard good things about marijuana use. However, it comes in many different forms and finding the right type for her is important.

Your wife may certainly need supplements, liquid vitamins are absorbed better. Hopefully her GI has her taking what she needs.

best to you both

 

[Hope345]

I am so sorry to hear all that your wife and you are going through. First of all I have to ask if she got tested for C.diff? that is a common test with IBD patients because they seem to be very susceptible.

As a mother of a daughter with Crohns/UC, I know that helpless feeling. Your wife is blessed to have you as her advocate. I cant imagine feeling so sick all the time and not having someone there to help.

You have gotten some great advice. I sure hope she can find the right medication that works for her and treat any stricture she may have.

I have heard good things about marijuana use. However, it comes in many different forms and finding the right type for her is important.

Your wife may certainly need supplements, liquid vitamins are absorbed better. Hopefully her GI has her taking what she needs.

best to you both

 

[FrozenGirl]

Welcome!

There is a step between sulfa drugs and TNF drugs. A category called immunosuppressant, there is Imuran and its sister drug 6-mp, as well as methotrexate. They might be a good option for your wife, given that insurance companies usually wont cover TNF drugs before you trial all the lesser drugs.

 

[lookame]

What are her symptoms? Is there blood? Mucous? Does she have pain before/during bowel movements? Is she expiriencing diarrhea? Does she have any deficiencies such as iron deficient, vit d ect?

I am on a combination therapy. Usually they start you on a base drug as a maintance drug something like lialda (there are others but I don't know what they are called). From there if you aren't finding relief they step you up to something like mercaptipourine. Last they try you on a biologic such as Remicade/humira ect. Some drs will do top down so the more aggressive drugs first but that hasn't been my expirience.

In my case I may not be going frequently-maybe 3 times a day but I have other issues such as bloody diarrhea, urgency/accidents and pain. since I have other issues it's been determined that the treatments aren't working (and according to my last colonoscopy) I am still very imflammed and have a lot of ulcers. I had to sit down and consider, yes I'm better than what I was but am I truly as well as I could be and the answer is no I'm not. Does she feel like she's in a good spot treatment wise? If not ring her GI and let them know the issues she's dealing with and see about the next stronger drug.

 

[Andrea_3]

I stay completely away from dairy. I switched from ensure to boost because I believe ensure has a small amount of milk product in it. Keep track of her trigger foods. I also stay away from raw veggies as that makes your body work harder to break down. My fiancé is a chef so he's constantly finding creative ways to feed me without having a flare. I'm also very under weight. I dropped to 93lbs and struggling to put back the lbs. Unfortunately, food isn't the only trigger. Stress whether physical or emotional is a trigger as well. At least for me. Be sure she eliminates as much stress as possible. She must have had severe inflammation. Most don't get dx'd by ct scan. Usually a colonoscopy. Antibotics is known to be effective on crohns. That helped me but also on pentasa.

 

[Crohns08]

Everyone else has offered great information in terms of tests and medications so I won't echo what has already been said. What I will add that in a supportive context sometimes a chronic illness and chronic pain from dealing with said illness can make you depressed and feel disgusting and unattractive. For me, one of the best things my husband is able to do for me is just to hold me and let me know he's there for me to lean on and that he still thinks I'm beautiful and sexy and your wife might look at you funny at first but the more you say it and let her know you mean it, it just helps lift your spirit and reminds you what you're fighting for. The load is easier to bear when you remember who you're pushing on for.