2016-04-27 New genes- no more Crohn’s

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I don’t have Crohn’s anymore – because my Crohn’s genes have been replaced.

  • Yesterday’s enteroscopy confirmed for the 7th time that my intestines have healed.
  • I am totally off medication.
  • The Lancet just published a gene study on 20.000 Crohn’s patients, confirming that your type of Crohn’s disease depends on what specific Crohn’s genes you have.
  • I don’t have Crohn’s anymore because the genes causing my Crohn’s have been replaced by healthy genes from my donor.

Thank you Eric Rydalch for your fantastic immune genes – they fixed my life!

 

 

2015-09-18: My guts are good!

I had my 15-months work-up during the last week. The enteroscopy today showed great results – again! Three enteroscopies in a row (March, June and September) show that areas that were affected by Crohn’s now are healed.

Below you can see a video of the remarkable healing of my small intestines by comparing the before-and-after videos.

I received a long and warm e-mail from my donor, who lives in Texas with his wife and two children. Dear Eric Rydalch, I thank you every day!

Your cells are doing a great job!

 

2015-06-17: Chimerism is improving

Ten days from today, 27th of June, marks the one-year anniversary of my bone marrow transplant. This whole year has been a true cooperation between Fred Hutch in Seattle and Oslo University Hospital.
A great amount of tests and examinations have been done here in Oslo as part of my one-year follow-up. And the results are great.
They show that the new immune system is kicking out the last parts of my old immune system. Consequently my small intestines, previously heavily attacked by Crohn’s, are healing.

The chimerism test shows how much of my blood factory is run by cells originating from the donor, and how much of the old factory is still there. Today, I received an e-mail of my hematologist stating the result of the chimerism test:
As of June 10th, the chimerism in my T-cells is 90% donor, which is significantly better than the 86% that was measured in December 2014! This means that the new immune system is taking over and is kicking out the last part of my old immune system with Crohn’s genes.
The joint strategy of Rikshospitalet and Fred Hutch seems to be working: To increase the activity of the T-cells from my donor by reducing immunosuppressive medication.

 

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Ready for enteroscopy/colonoscopy

On June 12th I had an enteroscopy and colonoscopy. This means that they looked inside both my small intestines and my colon. My gastroenterologist at Oslo University Hospital performed this procedure himself. He is simply the best. The anatomy of my small intestines is complicated, because of multiple surgeries and severe Crohn’s.
My stricture is only 10 mm long now, and there is no sign of Crohn’s inflammation in it anymore. This is really good news.
Villi are the small finger-like structures in the small intestines, where the nutrients are absorbed. My gastroenterologist gave me the remarkable news that new villi are forming in areas that were previously destroyed by Crohn’s inflammation.

Villus

A villus

My hematologist told me: ”Your immune cells are still going to school, and it will still take time before they can graduate. And their teachers are not fully qualified yet, either.”

This means two things:
1. The immune system is not fully trained to fight infections. Getting sick can still go fast and I might get more sick than normal.
2. The immune system still has to learn that it has to be friends with the rest of my body. It does not need to attack my body (this is called Graft Versus Host Disease).

As for point 1: So far, I have not had any major infections.
As for point 2: The new immune system might play a role in causing some pain in my feet, and some tingling in my skin. Those symptoms might be a form of Graft Versus Host Disease. They disappeared when I had to take major immunosuppressive drugs in December of last year, but they came back in February/March when I stopped taking the immunosuppressive drugs. The doctors think these symptoms will disappear after some time.

Life is great now – I can do anything I want to do (hiking, biking and playing with my kids), and I can eat whatever I like. It’s amazing compared to the shape I was in.

I look forward to returning to Seattle next week. The whole family will travel together this time, and it’s going to be fun, including the follow-up at Fred Hutch.

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Bicycle ride in the neigborhood

 

 

 

2015-04-10 Update: 9-months after transplant

In summary
My quality of life is great and  the transplant related complications are minor  – especially  compared to my Crohn’s disease prior to the transplant.  Enteroscopy today showed massive healing and formation of new villi where there used to be damaged tissue.  Except for one tiny 7mm spot, we found no inflammation!  Basically all the nasty stuff you see in my video that was taken one year ago, is gone!

Dear Dr. Vemund Paulsen, my gastroenterologist hero for several years, today you made my day with this enteroscopy! Thank you!

I love my donor T-cells

I love my donor T-cells

I know this is early – but I must say I am grateful to the medical teams at Rikshospitalet and  Fred Hutch – who have taken me to where I am today. Check how I am doing.

I believe the joint strategy of Rikshospitalet and Fred Hutch is working: To increase the activity of the T-cells from my donor by reducing immunosuppression medication.

I still have some remains of my old immune system that we hope the new immune system  (T-cells) will kill. I am not there yet. Until I get there, I assume I risk some degree of relapse.

As of today, the transplant has resulted in remarkable healing of my disease.

However, I am aware of the the serious transplant related risks I have taken. Consequently, I recommend that Allo-HCT is limited to severe cases of Crohn’s that have unacceptable quality of life, have failed to respond satisfactorily to available medical and surgical therapies – but still have not developed complications that would increase the risk of Allo-HCT.

In conclusion
A great day in my battle to wipe out Crohn’s.

2015-03-13 Birthday update

It’s my 46th birthday today! About time for an update 😉

IN SHORT

  • I still have a portion of my old immune system.
  • We are now reducing the immunosupression medication – hoping that this will make the new immune system from the donor kill the old one.
  • Cooperation between Rikshospitalet and Fred Hutch is great.
  • I am feeling better than in a long time – a lot better than before the transplant. The pain in my belly is manageable, I don’t have to think about it all the time.
  • I had to have a bone marrow biopsy and a blood transfusion.
  • We had a fantastic break during our kids’ winter holiday.
  • The snow has melted, so it’s possible to go for bicycle rides again. This makes exercising so much more fun!

LONG VERSION

Chimerism

Blood analysis performed at the end of December showed that approximately 14% of my immune cells were still mine (called ‘host’). This is called chimerism, after the figure Chimera from greek mythology being a lion and a  goat and a snake. My immune system is donor and host.
By reducing the immunosuppression medication we hope that the new immune system from the donor will take over completely. The goal is 100% donor cells, the sooner the better!

Chimera: Lion/Goat/Snake

Chimera: Lion/Goat/Snake

Blood loss 
In late January/the beginning of February my blood values dropped. These results came in while I had a consultation with my hematologist. He had to make sure that the bone marrow was still working. ”OK I’ll take a bone marrow biopsy”, he said. I had never had one so I must admit I got a little anxious. Quite a few people in Seattle had told me that it was very painful.
It wasn’t! Or, my Doc is just extremely good at it. It must look a little brutal, a tall and strong man using quite some power to stick a hole in my breast bone. However, this wasn’t brutal at all, and before I realized it the bone marrow was put on miscroscope slides (see featuring picture on the top of this post).

He called me the same afternoon already to tell me that my bone marrow was ‘working like a horse’, so nothing was wrong with it. He then told me that there must have been blood loss. I must have been bleeding from my intestines. This was true- I just hadn’t paid much attention to it. Next time I will 🙂
The day after I got a blood transfusion. Two bags. And all blood values had stabilized the next week. And this was a turning point for me starting to feel better.

2015-02-05: Blood transfusion

2015-02-05: Blood transfusion

Winter holiday
For a long time it was uncertain if I could go on this holiday. My hematologist said it was ok to go. He also certified a list of medications I was taking, in case customs would question the content of my luggage.
On February 16th we flew to Fuerteventura, and we had a very good time. The weather was nice and windy, not too hot.

Great trip to Fuerteventura!

Great trip to Fuerteventura!

We had rented bicycles. In the beginning of the week we were down there I could stop taking one of the medications I had been taking after the enteroscopy. During the next few days I started feeling remarkedly better. During the last day, I even cycled up to the Lighthouse, a 14 km long trip with a total of 300m elevation. The last bit of this trip is 100m straight up.

Feeling very accomplished after a bicycle trip up to the Lighthouse on Fuerteventura :-)

Feeling very accomplished after a bicycle trip up to the Lighthouse on Fuerteventura 🙂

Status
Since the wonderful vacation my health has been improving. I was allowed to stop taking two more drugs. So now the only immunosuppressant is the one called tacrolimus (Prograf).

Since last weekend, the snow has melted so much that I have been able to ride my bicycle outside again. In addition, I do my work-out in our garage. Last weekend, four members of our family were working out together.

I will have another ‘chimerism work-up’, probably 26th and 27th of March. Another round with blood tests, stool tests, enteroscopy/colonoscopy with biopsies, and bone marrow biopsy. I am actually looking forward to it. It will give results on how the new immune system is doing.

 

2015-01-16 Bumpy road

I am currently having a bumpy ride – sorry for not writing.

The short version is that I have some kind of inflammation in my small intestines – and the doctors in Oslo and Seattle are working hard to find the cause(s) and how to attack it. The main hypotheses of the doctors are that it either is GVHD from the new immune system – or Crohn’s from the 14% which is still left of my old immune system.

Based on groundbreaking  analysis and hard work at Rikshospitalet, the doctors seem to be leaning towards Crohn’s from my old immune system. I am extremely impressed by how  the Rikshospitalet team is putting together the puzzle and developing a strategy in cooperation with Fred Hutch. I feel lucky to have such competent and determined teams at Rikshospitalet and Fred Hutch working together to push the limits of medical science.

In my intestines, T-cells (the yellow balls) are currently by mistake attacking my intestines.  T-cells are immune cells that are supposed to recognize and destroy foreign material in the body.

In my intestines, T-cells (the yellow balls) are currently by mistake attacking my intestines.

It all started in November with increasing pain. In the December I had clear symptoms that a stricture was developing. December 19 Rikshospitalet performed an enteroscopy – during which they found a 10 cm long segment with inflammation and a stricture with only 3mm opening. Once again the fantastic team at gastro used a balloon to open the stricture, to relieve me from pain and enable food to pass through my system. This inflammation and stricture is quite a setback from the fantastic healing I had the first months after the transplant.

I had another colonoscopy on January 7, and an MRI on January 13. The top picture of this post shows me going into the MRI machine.

The good news is that my intestines looked completely healed in the other segments that previously had active Crohn’s. The bad news is that the affected segment looks like Crohn’s, but it could also be GVHD from my new immune system. Both diseases are caused by T-cells making mistakes. This sounds similar, but the strategy to solve the problem is somewhat opposite. If it is GVHD (caused by my new immune system) they want to increase immunosupression. But if it is Crohn’s (caused by the 14% of my old immune system) they want to decrease immunosupression to enable my new immune system to kill my old immune system.

So basically it’s time for me to fasten my seatbelt. Now we will slowly “untie” my new immune system and hope it kills my old Crohn’s immune system completely. I am ready!

The T-cell to the left is going for the kill

The T-cell to the left is going for the kill

 

2014-12-15 Update

It has been a while! I will give a medical update, then a general one. I also have to share some sad news.

Medical update:

Stomach:
The great thing is that I don’t have fatigue, and I don’t have fevers. I eat well, I even started with fiber and lactose again, and food tastes good. I gained a couple of kilo’s of weight.
However, I still have some pain, varying from 2 to 5 out of 10. Over the last months the pain has changed. It is now present in a bigger part of my stomach, and it is of a burning kind. They did two FeCal tests (fecal calprotectin) which measure the presence of inflammation/sores in the intestines. The test results showed moderate elevation. All these factors (pain and calprotectin levels) might be caused by Graft Versus Host Disease (GVHD- the new immune system attacking my intestines). To find out if that is the case the doctors at Rikshospitalet have scheduled to do an enteroscopy on Friday th 19th. The biopsies they will take will show if there is GVHD. If there is, I will most probably have to increase the Prograf (tacrolimus- which suppresses my new immune system) and to start taking prednisolone (which will help fight GVHD).

Eyes:
I have been to my eye doctor and he confirmed that I have what he called an ‘extensive’ cataract (grå stær/grauwe staar) in the lense of my left eye. He advised to get the lense replaced as soon as possible. It will take a couple of months before it will get fixed.

Joints:
I have pain in some of my joints (heals, knees, hips, shoulders and hands). Sometimes I move like an old lady. I also get stiff in my muscles after I take a walk. These might also be signs of Graft Versus Host Disease. If the enteroscopy shows GVHD, and my medication is adjusted, this probably will help on the joints too. I might also need to start with methotrexate once a week.

Nerves:
I am numb on the left side of my left foot, and if I turn the foot inwards, I get the same feeling in my foot as when hitting the funny bone. Same thing happens when I slightly touch a spot on my left hand: My index finger is on fire. Doctors say this is a common effect of several of the medications I have been taking, and that it most probably will go away as time passes.

General update:

Like I mentioned above, I love that I don’t feel fatigued, I don’t vomit, I eat normal food, and food tastes good.
In addition I started swimming again. Swimming does not hurt so much in my joints, and it does not make me stiff afterwards. I found out that I still can swim 1500 meters in 40 minutes.

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Swimming again!

I enjoy having people over for dinner. We had a nice Halloween party for example. I remember last years Halloween as the start of my last severe flare of Crohn’s. This year it was all about the fun. A buch of kids made me ‘even more scary looking’.

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”Now you look even more scary, mommie…”

We celebrated Sinterklaas (‘Dutch Christmas’) on December 5th. Everyone got lots of presents with a little poem hinting towards what’s inside. It’s a lot of work, but all three kids still love it, so I do too!

sinterklaas
Sinterklaas: Lots of small presents- with poems.

And now we are preparing for Christmas. Cards are being written, giant stars are lit in the windows, and we are going to chop a Christmas tree this weekend, just across the road. We will not have a real tree in the house this year because of the possible germs it might contain, which might make me sick, but we will put the tree outside. This means we can chop a big one!

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Lussekatter, traditional sweet rolls baked on December 13th, Saint Lucia

Following-up on the kids makes me feel great. They’ve all been to the dentist’s for example. A year ago, I would not have been able to do all these normal things.

.Dentist
The youngest one had crashed into someone and got a loose tooth. Mommie was there.

Finally I have to mention som sad news. Our neighbours here in Norway, who are from Seattle, decided early this fall to move back to Seattle in January 2015. One of the reasons was that they then could be closer to grandmother, who needed more help. Sadly enough, grandmother died late October. Grandmother had Crohn’s disease. She had surgery in the summerof 2014 and received a stoma (utlagt tarm). However, her abcesses and fistulas did not calm down like expected, and she even got more abcesses. She suffered from multiple infections. She died from complications resulting from the Crohn’s. Here’s a picture of her and her daughters, taken approximately 35 years ago. She only got 63 years old.
Jens mom
About this picture, written by Jen: This is my mom, my younger sister and me in 1978; probably around my mom’s 27th birthday. My sister is 8 and a half months, and I am 3 years old. My mom passed away two weeks ago from complications due to Crohns disease. She was 63; way too young to leave this world. I miss her everyday, and still can’t believe she won’t be there when we move back to Seattle next month. Mom was strong and brave as she raised two daughters and doted on her grandchildren more than humanly possible while ensuring this disease for most of her life. She was very sick at the end, spending most of the last 6 months in the hospital. At least she is no longer in pain now.