Rehab for CED - Carsten's experience report

Rehabilitation can be an important part of treatment for people with chronic inflammatory bowel diseases such as Crohn's disease or ulcerative colitis. In addition to drug therapy, the rehabilitation room offers the opportunity to take a holistic view of one's own state of health. This is not just about alleviating physical complaints, but may also include topics such as nutrition, dealing with stress and many other treatment options.

In practice, however, the question arises for many people with IBD: What does a rehab stay really feel like? It is precisely this perspective that we would like to address in this article. Carsten, who has been diagnosed with ulcerative colitis, tells us about his personal experiences during rehab. His story provides insights into how individual such a measure can be, what challenges arise and what opportunities rehab offers for life with IBD.

Contents

Rehab for CED - Carsten's experience report

Testimonial from Carsten (54) with a diagnosis of ulcerative colitis

Question 1: When were you diagnosed with IBD?

I was first diagnosed in 2020, when I had a mild inflammation and was then treated with mesalazine. That worked well for two years, then came the first real flare-up in 2022, which I ignored for too long due to personal stress. As a result, I was hospitalized for four weeks, including blood transfusions and artificial nutrition.

Question 2: How has the disease affected your life and your everyday life?

Of course, the diagnosis was a shock at first. I often wondered what to do next. I thought a lot about my diet, almost didn't dare leave the house and it was also stressful for my relationship.

Question 3: What prompted you to apply for rehab?

I've done two rehabs in total. The first rehab was in 2022, which I hoped would give me a break and help me cope better. I then applied for the second rehab in 2025 to regain my strength.

Question 4: How was the procedure organized?

Although there was a lot to fill in, the applications went through without a hitch thanks to the help of my GP. Both were approved within four weeks. The waiting time for the clinic was then another four weeks or so. Thanks to the List of the DCCV I was pretty sure where I wanted to go and it worked out well both times.

Note: DCCV members can request the updated list directly from the national office. Non-members can use the contact form to get in touch with the national office.

Question 5: Did you have certain expectations, hopes or perhaps worries beforehand?

I was only really worried during my first rehab, for example, about how the diarrhea would go. But the worries were completely unfounded, because you're in a safe space and everyone else who is there knows what it's like.

Question 6: What was your first impression of the rehab facility?

My first impression was very positive both times, the rooms were very nice, everyone was very friendly and wifi was available.

Question 7: What was a typical day in rehab like?

A typical day started with breakfast, then sports, treatments, lunch, then more treatments, dinner and then time for me. I also had free time at the weekends. In my first rehab, there was quite a full schedule with lots of treatments, which I liked. In my second rehab, I had more time for myself, but sometimes too much idle time.

Question 8: What kind of therapy did you receive?

I had physio, light sports, nutritional advice, massages, hydrojet and other leisure activities, which I didn't take up.

Question 9: How long were you in rehab? Was it inpatient or outpatient?

I was hospitalized for three weeks both times. After that, I could have extended my stay, but after three weeks, I was starting to feel a bit sick.

Question 10: Were there any moments that stuck in your mind in a particularly positive or negative way?

In Bad Hersfeld there were very good lectures on the effects of various medications, treatment options and the disease, which definitely helped me a lot.

Question 11: How did you experience the exchange with other affected people?

Overall very open, honest and helpful. Many had great tips. It was also helpful to realize that you are not alone. One of the things that made an impression was that the removal of the colon in ulcerative colitis is not necessarily the end of the symptoms. It can help, but it doesn't have to.

Question 12: What was the most important thing you learned from rehab?

I learned a lot about dealing with stress and the various treatment options.

Question 13: How do you feel today compared to before rehab?

After rehab, I felt much fitter and more relaxed.

Question 14: Is there anything you would have liked to have known before rehab?

For example, that psychological counseling is not readily available, but must be applied for in advance with the family doctor.

Question 15: What advice would you give to other people with IBD who are considering rehab?

My advice would be to find out exactly where you want to go beforehand. For example, the DCCV's list of clinics that have treated how many IBD patients helped me a lot. Bad Hersfeld was ideal for the first rehab for learning because of the in-depth lectures and Bad Brückenau was great because of the surroundings and for switching off.

Question 16: When would you recommend rehab?

At any time, as soon as you are "fit to travel" again. It's best not to worry, you can define the applications yourself within broad limits.

Conclusion

Carsten's experience report shows that rehab for ulcerative colitis is much more than just a medical measure. It combines physical and social support and can make a decisive contribution to coping with the disease. Rehab can provide new perspectives, give courage, replenish energy reserves, initiate new routines and give people with ulcerative colitis or Crohn's disease the feeling that they are not alone by sharing their experiences with other sufferers. Even if rehab can also bring challenges, it also offers the opportunity to shape your own path with IBD more consciously and to return home stronger. It is important to check together with the treating doctors whether and when rehab makes sense.