Stories that Showcase the Difference in Disease Course and Treatment Between Siblings - Please Share Yours

[Pilgrim]

Very true. I grew up with a sister who also has Crohn's so there was at least someone for me to connect with on that level but as we got older our thoughts about treatment differed so having a forum like this back then would have been really beneficial to me. I'm glad that it's here for everyone else though that's newly diagnosed and seeking support.

I know it is probably too personal but it would be interesting to know how your treatments differed and also then how your disease course differed considering your shared genetics. Would you be willing to share that story? Not wanting to derail this thread though...

 

[Jennifer]

My sister and I were diagnosed the same year in 1991. She's 17 months older than me. I was 9 and she was 11. I'll tag her to this thread as well in case she wants to weigh in. tsstarry

We were seeing the same GI and I believe for a while we were on the same medications. I started out with Azulfidine yet I'm not sure if she took that as well because I eventually started passing a lot of blood in my urine from it so I was switched to Asacol and later 6MP/Mercaptopurine which I know my sister also took (the 6MP that is). We also both took Prednisone at a high dose for far too long and both had extreme water retention that resulted in stretchmarks on our bodies. I'm not sure if that's our parent's fault or our GI's fault but we did live about 4 hours away from our GI so this is something I believe our parents should have reported sooner before it got as bad as it did. At some point you have to accept that it's not working and move on to something else but since we were minors, our health care wasn't really in our hands.

I'm not entirely sure what all went on in my sister's mind during that time but it may have affected her view on doctors and medication in general. For us it sort of seemed that the extreme side effects from the high dose of Prednisone at the time wasn't worth what the Crohn's was doing. I didn't know what all Crohn's was capable of until I got much worse and this is where my sister and I went a different path in terms of treatment and in my ability to know what treatment she was getting anymore. A lot of focus went towards me when my health declined and that's not good when you have two children with the same disease. Her health being neglected could have put her health in jeopardy as well.

While I was still on Prednisone they added Entocort which I was told was newly approved back then. Maybe it could have worked had I gotten it sooner but it was too late. By that time my disease had progressed so much that the medications weren't controlling the inflammation at all and I started having obstructions because of it. I remember one time we were all out getting pizza and I remember not feeling the best but I was managing until I felt extreme pain and a wave of nausea so I ran outside and vomited in front of the building. My mom immediately took me to the ER and that's when they discovered that I really needed surgery. I was pout on a liquid diet until my surgery date.

After my surgery I continued taking Asacol and 6MP to help keep my Crohn's in remission which I achieved after my resection. I was 17 at the time. I've been in remission since and have always taken medication following my resection.

So what happened to my sister during that time? I know that she had tried to go to college after graduating High School from a different High School than the one she was at originally. I don't recall why she changed schools but I believe it had to do with low grades and a disinterest in school which all could have been related to her health. I know I missed a lot of school and I'm sure that she did too. I'm not sure of the year but at some point my sister stopped receiving SSI (we both did and I still do) and no longer had any health coverage. Since she couldn't afford to see a doctor or afford medication or tests her health would wax and wane. She would often tell me that she was doing fine yet there were a couple times when she mentioned that she saw blood in her stool which is a clear sign of active disease. To this day she hasn't taken any medication for Crohn's and I think it's been at least 10 years if not longer.

Her last scope that she finally was able to do recently showed no signs of active disease meaning that she's in remission. However during and after her recent pregnancy she's had a lot of issues with her joints, feet, hips and back that her doctors have yet to explain. Crohn's can affect far more than just the bowel so it's very possible that she may be experiencing some form of Extra Intestinal Manifestation brought on by the pregnancy or maybe it's some forum of postpartum something or other.

So to sum up, I've been on medication constantly but it's very possible that it was the wrong medication since I wound up needing surgery and my sister did not. Perhaps the meds worked better for her but maybe a biologic or combination of something else would have been best for me yet back then a lot of drugs hadn't been approved in the US yet.

 

[ronroush7]

Thanks for sharing

 

[DustyKat]

I hope no one minds me adding in to this discussion.

Sarah was diagnosed at 14 following an emergency small bowel resection due to a rupture. She had been unwell for the previous 18 months - 2 years, with her episodes of ill health becoming increasingly frequent and severe as time passed. They found large amounts of pus in the abdominal cavity and I am of the belief that she likely had fistulae and abscess but this has never been confirmed. Post surgery she was commenced on Imuran and that has been her only Crohn’s medication. I can say with surety that she is no longer on Imuran, at her instigation, and likely hasn’t been so for some time. She has waxed and waned with various eating patterns over the past 5 years years including vegetarian, vegan, raw vegan, very limited sugar, no caffeine and supplementing with juicing. Over the past 12 - 18 months she has not observed any particular eating regimen but now she has moved to Japan I feel she will go back to a more structured routine. July this year will mark her being 10 years in remission.

Matt was diagnosed at 17, about 3.5 year after Sarah. His diagnosis was very quick and came on the back of next to no symptoms. Treatment was commenced the day of his diagnosis, Prednisone and Imuran, but he developed complications within a couple weeks, fistulae and abscess, which required a small bowel resection. He remained on Imuran and eventually had Pentasa added as a precaution. He had a good 4 years of remission before flaring again and has now had Humira added to his list of meds, so three Crohn’s meds at present and he has never been off medication. He has never altered his diet, always having had a tendency to lean toward low fibre foods.

Sarah and Matt both have Ileal Crohn’s, both have fistulising disease and both required surgery early in the diagnostic period despite the fact that Sarah was no receiving no treatment and Matt was on medication. I have been of the opinion, since Matt’s diagnosis, that my two have the same genetic defect right down to disease location and phenotype. Whilst I still hold this belief highly I have over the ensuing years started to wonder what Sarah’s outcome might have been had she been diagnosed much earlier. The reason being:
- Matt diagnosed very quickly, very few symptoms, disease classified as mild to very mild and under treatment. Yet he quickly developed complications that resulted in him have no option other than surgery.
- Sarah on the other hand was symptomatic for a very long period of time yet it took all that time for her to hit the crisis point and with no treatment whatsoever. So although she likely had the same complications as Matt were hers in actual fact a result of untreated Crohn’s that anyone has the potential to progress to given time and circumstance and not due to a pre-existing phenotype? Could she have had the end point of untreated stricturing Crohn’s and not fistulising Crohn’s (in the true sense) at all? *shrug*

 

[Jennifer]

Not at all Dusty! I'll edit the thread title in case anyone else is willing to share a similar story.