WHEN CIDP TAKES SWALLOWING

By Ayoposi Ojelabi · Published: 1 April 2026

The last time I ate solid food before my illness took over was August 2024.

I did not know at the time that it would be the last time for months. You never do. Eating is so automatic, so unremarkable, that the idea of losing it entirely does not register as a possibility until it is already gone.

The Gastrostomy Tube : Before the Transplant

The gastrostomy tube was not inserted because I had already lost the ability to eat. It was inserted as a precaution.

Before my bone marrow transplant, my consultant explained that my breathing muscles were already weak and that there was a real risk of lung complications during or after the procedure. The tube, placed directly into my stomach through the abdominal wall, ensured that nutrition could continue if I lost the ability to eat safely.

At that point I was still eating normally by mouth.

The tube sat in my abdomen as preparation for something I hoped would never happen.

On August 6, 2024, the final day of the transplant process, I noticed difficulty breathing before bed.

On August 7, I woke up intubated.

My lungs had failed. Machines were breathing for me.

The precaution became necessity overnight.

My consultant had prepared for something I had not yet understood I was being prepared for.

What Being Fed Feels Like

Eating involves choice, taste, timing, and the social rhythm of a meal.

Tube feeding involves none of these.

Nutrition arrives on a schedule, through a tube, without your participation.

I did not eat.

I was fed.

The tube kept me alive. Without it I would not have received the nutrition my body needed to attempt recovery. But it also marked, very clearly, how much of ordinary life had disappeared.

During this same period I developed an abdominal obstruction that made bowel function difficult without enemas and strong laxatives. Even digestion stopped behaving like something I could rely on.

Eating had disappeared. Drinking had disappeared. Even the body’s internal rhythm had changed.

The Thirst : When the Sponge Was All They Could Offer

While my tracheostomy was still cuffed and I could not speak, I began trying to ask for water.

Not speaking. Spelling.

One letter at a time on an alphabet chart.

The thirst was overwhelming in a way that is difficult to explain unless you have experienced prolonged fluid restriction. This was not ordinary thirst. It did not pass. It stayed.

The risk of aspiration was considered too high.

Instead, I was given a sponge on a stick dipped in water and pressed to my lips.

Technically, it helped.

In reality, it did not.

Moisture without swallowing does not resolve thirst. It only reminds you what you cannot do.

It was relief in appearance, not in effect.

The Spoon and the Decision Made With Risk

After several conversations, the team agreed to allow very small amounts of fluid by spoon.

Still not enough.

Still not satisfying.

Eventually I gave informed consent to begin drinking small amounts even while my tracheostomy cuff remained inflated.

Many nurses told me they had never seen a cuffed patient drinking before. They were not resisting. They were cautious. This was outside their usual experience and outside standard protocols.

I understood the risk.

The thirst was stronger than the caution.

What I observed during this period surprised me. My oxygen levels dropped less when drinking with the cuff inflated than they did later after the cuff was taken down. I cannot explain the mechanism. I can only describe what happened.

This was my experience.

It should not be interpreted as guidance for anyone else.

After the Cuff Came Down : Learning to Drink Again

When the cuff was eventually taken down and my voice returned, a different challenge appeared.

My oxygen levels now dropped more when I drank thin fluids than they had earlier.

Formal clearance to drink freely had not yet been given.

Between January and March 2025 I began studying what my body was doing.

Position.

Volume.

Timing.

Pacing.

One sip at a time.

Adjusting each day.

By the end of March, the desaturation episodes stopped. I was drinking without supplemental oxygen support.

The body had relearned something it once did automatically.

April 17, 2025 : The First Meal

Early in April I felt something I had not felt in months.

Hunger.

Real hunger.

I requested a review. I wanted to try eating.

The team agreed cautiously to risk feeding after I gave informed consent.

The date was April 17, 2025.

Eight months since I had last eaten solid food.

The first meal was rice.

I managed one spoonful before fatigue stopped me.

The next day I tried again.

Then again the day after that.

Within a week I was eating full meals.

Not because something dramatic changed.

Because repetition worked.

The body remembered.

What This Experience Taught Me

CIDP is usually described as a disease affecting peripheral nerves and muscles.

What is discussed less often is how far those effects extend.

Breathing.

Swallowing.

Digestion.

Hydration.

Nutrition.

The gastrostomy tube placed before a transplant that later became essential. The abdominal obstruction that followed. The thirst behind a cuffed tracheostomy. Spoon drinking that most nurses had never seen in a cuffed patient. Desaturation that behaved unpredictably. And the first spoonful of rice eight months after the last meal.

None of this is unheard of in severe CIDP.

It is simply rarely described from the inside.

Most people who experience it are too unwell to document it at the time or too relieved afterwards to return to it in detail.

I am describing it because someone searching for this experience deserves to find what it actually feels like.

Not a clinical summary.

The real texture of it.

The sponge that was not enough.

The spoon that helped but not enough.

And the first full meal that proved the body had not finished recovering.

This essay describes personal decisions made with full informed consent and awareness of the risks involved. It reflects my own experience and should not be taken as medical guidance. Decisions about eating, drinking, swallowing, or tube feeding should always be made with your clinical team.